Yeah, we made it through another day. This is the official end of day 120 here in Omaha. Ash and I have survived. When I look at the number of days we have been here I start to get a little overwhelmed until I remember that Ash spent the first 170 days of her life in hospitals back home in Texas. After being discharged on Jan. 20, 2006 we were given 226 days at home together before being called to Omaha for transplant. During those 226 we spent a few of them here and there in Children's Hospital of Dallas and a few weeks her in Omaha for transplant evaluation but who is really counting anyway? The point is that Ashley has been given 518 days of life and every one of them has been a gift from the Father. A gift that He has allowed me to be a part of. Every day I have loved her. I have prayed for her. I have been thankful for her.

Some of these days have been longer than others. Some of them have been happy. Some of them have been sad. Some of them have been scary. Some of them have left me numb. Some of them have brought great joy. Some of them have included sorrow. All of them have been blessed. Each and every day of her life has been a blessing to me.

Throughout each day of her life I have felt His presence. Guiding, protecting, loving, providing. I know He is here tonight. I know He is always working for her good. I believe He is watching over her while I sleep(even though she does not). I am thankful that He loves her and that He wants the best for her. Even when I struggle to understand I rest in the assurance of His love for my Ashley.

Another day is done and I look forward to what tomorrow will hold. It is full of promise. It is full of possibility. It is full of memories to be made. A clean page with which to write another part of her story. Good night from the PICU. May you rest well. Love, Trish

I just got off the phone with Trish and Ash. It was really great to hear Ashley's sweet voice. She started off sounding really playfull. She was having a good time with herself. She then started the growling and pirate talk "Ahoy there.....Arrrgg" She talked to me for a while and had all kinds of things to say. It was so nice to hear the excitement and joy in her voice. She then quickly became agitated and sounded very upset and distraught. I can hear the struggle her little body is having with so many medications. My prayer is that God would guide and lead us in such a way that we can begin to wean her off of some of these toxic substance. Please be in prayer with us for Ashley that we can carefully and thoughtfully reduce some of the toxins going into her tiny body. Thank you for your love and care for a little Gherkin.

Goodnight,

DAVE

Only the Father knew what today would hold for me. He knew before it all seemed to come tumbling down. A disappointment, a broken heart, a search for answers to many questions. Last night I received a very special gift. I didn't know it had come until the early morning hours of today, but I believe it was delivered to me just in time.

The gift was something I had never seen before. It was beautiful and it came with a card that told me it was from a group of women from Christ Community Church. They are praying for me and they made me a prayer shawl. The card went on to tell me that when I wrapped myself in it their prayer was that I would feel God's loving arms holding me and His unconditional love ministering to me. As I put Ash down for a nap today I opened the blinds to watch the snowfall and sat in my chair wrapped in this gift. I felt a peace come over me that I have not felt in a very long time. I cried as I realized how good it felt to know that there are people all over the world praying for my family at any given time of the day. I needed to know that someone was lifting me up and carrying my burdens for a little while. It brought me such comfort. So let me say to those who sent it Thank you from a heart that carries much hurt during this difficult time. Your ministry touched me very deeply and I hope to keep it always so that I might just feel His presence wrapped around me.

"The eternal God is your refuge and underneath are the everlasting arms."
Deuteronomy 33:27

I continue to be blessed by people who God is using to minister to me and my family during this time in our lives. He never fails to send someone my way when I need them. He is taking care of us even when the days seem to be longer than they should be. As I sat wrapped in my prayer shawl it seemed as though His arms were there holding me while I struggled with the distance that has been placed between Dave, Blake, Allie, Ashley and myself.

A trip down memory lane today has filled my eyes with tears and my heart with joy. I wanted to share with you what God has given to us. It is this face, these fingers, these toes, this bundle of baby girl that keeps us keeping on. All the hurt, all the heartache, all the separation, all the surgery, all the struggles are worth it because this is who He trusted us with. Thank you for sticking with us. Thank you for loving her. Thank you for praying day after day after day. The journey is long, it is hard, and it is confusing, but at the end what we are allowed to hold and to love makes me willing to do all over again if He asked me too. This is my Ashley Kathrine Adams and I know the Father has plans for her life. Enjoy! Love, Trish

As I was visiting with my nurse this morning over a difficult situation I have been faced with she asked me this question, "So do you believe that God is involved with everything that happens in your life and that all things happen for a reason?" My immediate response was, "Yes, absolutely. I know that He is and that they do."

How odd it was for me to be posed with this question when I had just spent my entire morning shower praying about Ashley's life and all that she has been faced with. I was wondering to myself if God caused Ashley to become ill or if He had allowed her to become ill. I know that she was created just exactly how He designed her, but I also believe that Ashley's struggles are a direct result from poor decision making on another's part. What is the correct answer? Does it even matter if I find it? For some reason I have just been struggling with it. I was given a verse to think about and to apply to my Ashley's life and I seem to be confused by it.

Matthew 18:14 - Even so it is not the will of the Father who is in heaven that one

of these little ones should perish.

I don't believe that the Father wants for Ashley to die, or that He wanted her to be chronically ill, but I do believe that He wants to use her life to bring us closer to Him. This is very difficult to explain because I go back and forth in my own mind about it. I do believe that He has already numbered the days of her life, but He has also numbered mine. He never promised us this life would be easy. As a matter of fact He told us that there would be trials and their would be struggles. I am praying that as we face those in our daughter's life that we can bring it all back around to serving Him and His purpose for them. This is not easy for me to do. There are days when I want it all to go away.

When it comes down to it all I know that I can trust Him. I know that I have placed my faith in the One who created the mountains that I can't climb. I know that I have placed my faith in the One knows how many grains of sand are on the beaches. I know that I have placed my faith in the One who can calm the waves in the ocean. I know that I have placed my faith in the One who can forgive the vilest of sins. I know that I have placed my faith in the One who can heal the pain in my heart that seems so deep and so confusing and so overwhelming. I know that His plan for Ashley will be more beautiful than any that I could come up with on my own, but I have to allow Him to work it in her life. He does not have to do things my way. He is not a God that I can demand to heal my daughter. He is not a God that can be manipulated by my fits. He is not a God that has to be told what to do. HE IS GOD. I can't control Him, and I don't want to. What type of God would He be if I could? Certainly not one that I would want to serve. He has a wisdom far beyond my understanding. He loves deeper than I can comprehend. As much as I love my Ashley can you believe that He loves her more? This is the God that I want to place my faith in. This is the God that I believe is involved in every detail of my life and in Ashley's.

I am faced with many tough questions by those who are trying to understand my faith. I can't answer them. I struggle to answer my own. All I know is that this place, this time, this situation has not occurred by accident. Her life, her struggles, her pain, her laughter, her smiles, her joy are not by chance. He is involved. He does care. I just know that this is what I believe.

My sweet Ashley has NO intention of sleeping tonight. This child is absolutely exhausted! As I type she is happily sitting behind me with her "carpet" bag. She reminds me of Mary Poppins. Have you ever seen the movie? The part where Mary opens up her bag and begins to pull out everything under the sun? I fully expect to see Ashley pull out an umbrella at any minute to keep her nice and dry from the SPIT storm she is creating above her head. Honestly, she just loves to spit. Ashley's red diaper bag is full to the brim with every type of toy you could imagine. She doesn't want me to hand her a toy. She wants me to sit the entire bag next to her so that she can reach down inside and pull out prize after prize. So far I have seen her pull out a telephone, a camel, a DVD, a box of Tic Tacs, a baby, a syringe(unused and in the package of course), a book about Jesus, a bunny, a hairbrush, and a skirt. Who packs this bag anyway? This child is so funny. As she finds more and more treasures she growls and spits. She has begun to draw a crowd this evening. I wish she would behave more like a princess, but I am afraid it is going to take more than a crown to teach her what her role is supposed to be. Please, please pray that I will be able to mold this little one's heart into one of a young lady and not a nasty, spitting pirate. My friend Regina is threatening to mail her a patch! I am sure this will not match her crown.

The point of this post is to share with all of you how very good my Ashley Kate is feeling tonight. She is more than ornery and is causing more trouble than you can imagine. She has managed to pull the baby in the mirror off of her crib and onto her head. She got a real close up of that beautiful baby. She has kicked off her bunny slippers and they are now residing on the floor. She is chewing on a Blues Clues DVD and leaving teeth marks on it. She has slammed the lid to her DVD player closed on her fingers tips and is now giving our respiratory therapist a hard time as she attempts to give her some breathing treatments. Poor lady, she has no idea who she is up against. I hope to be able to wrestle this little one at some point in to my arms and cuddle her in our chair. Honestly, I don't know if I have enough energy to win.

If you saw my Ashley you would think to yourself, "Why are they here. This child doesn't look ill." Unfortunately it has been 17 weeks tonight since my Ashley has eaten. She is still on a full diet of TPN and lipids. She has much more to accomplish before being allowed to leave this place and sometimes it seems impossible. I wish I could tell you that I knew what her future held, but all I can tell you is that I know the One who knows what my Ashley's future will be. I trust Him with her and that is all I can do. I am hoping to get her to settle down for awhile and then rock her until she falls asleep. I wonder if she has any NyQuil in her "carpet bag"? Just kidding, Dave! Thanks so much for coming to Ashley's story tonight. We truly appreciate your prayers for our little Mary Poppins. Good night.

If you are a parent I probably don't need to explain. You know it. You have heard it. If you are not a parent, just wait. It is one of the best parts of this job. You'll hear it. Someday for sure. Today was my day. Its the kind of laughter that comes from the deepest part of your child. Pure JOY! It just explodes in the form of a contagious laughter that in turn causes you to laugh just as hard. Sometimes it overtakes your children in the most inappropriate places (like the middle of a Sunday morning message, or in the stall in a rest room next to a particularly noisy one). Sometimes it can be over heard from the other room while you are busy doing ordinary tasks such as preparing dinner or folding laundry. It always makes me pause and say Thank you when I hear Blake and Allie overcome by it. Nothing I say can properly describe the way your heart feels as you listen to one of your children get caught up in an episode of belly laughter. My nephew Jake has one of the best ones you will ever hear. I love it when I visit with my sister on the phone and he falls into it.

Well today was Ashley's first experience with it. I can not tell you how wonderful it was to experience it with her. She smiled so big I thought her cheeks would surely pop! She laughed so hard it scared her. I got so tickled at her. I was turning her in circles. I would go one way, then the other, then back again. She laughed and laughed and laughed. It was priceless! I am so blessed by this little girl. She is truly wonderful.

Today has been a good day. We have rested and played. She looks really good right now(outside of those steroid cheeks!). I can tell she is feeling so much stronger. We will go down to procedures on Friday at 1:00. They will attempt our 5th tube placement. We are trying to figure out a way to have it placed without putting Ashley on the ventilator. She is breathing so well. Her lungs sound completely clear. I hate to jeopardize her breathing status, but it may not be avoidable. Once the tube is placed we should begin feeding her later that evening. I am not sure if our breast milk will be delivered before next week, but they are working on it. Our prayer is that somehow, some way, Ashley will not begin vomiting. We pray she will tolerate feeds and that all the struggles will be behind her allowing us to avoid a very dangerous and invasive operation. I know that God can do this. I believe He could. Please join us as we pray for solutions to her struggles.

What a gift her laughter is. God is the giver of good and perfect gifts and today I definitely received one. I am so blessed. Thanks for sharing in my joy. I pray your evening might contain a few belly laughs that make you pause and say Thank you for such perfect gifts. Love you guys, Trish.

Ashley and I will be keeping the lights out for most of today(I hope!). My sweet girl decided to play and play and play and play all night long. Every time I looked up she was shaking, shaking , shaking her baby. Then she would give it kisses, kisses, kisses. This went on for hours. Silly girl. This morning she is a little grumpy with everyone as they do their assessments, take vitals, give meds, do therapy, etc. Too bad for our little miss, maybe she should learn to sleep when its dark outside.

I so appreciate everyone wishing I could come home for a while, I honestly do, but I will not be leaving Ashley here without a parent. Only a parent has the authority to make decisions on Ashley's behalf and with the course that Ash's recovery has taken we are making them on a daily basis. David and I have perfect peace about the role that God has placed us in as Blake, Allie, and Ashley's parents. There are no substitutes for the love, attention, care, and concern that can be given by a parent. The children have loving grandparents, aunts, uncles, friends, etc., but none of them can do what Dave or I do for our kids. Since David is the sole income for our family it is impossible for us to trade places. Unfortunately real life and its costs do not cease for us just because one of our children are ill. Our goal for our family is to bring our Ashley home to Texas so we all can be together again. Until then we will stay strong, keep fighting, continue seeking and praying. Blake and Allison are secure, healthy, and know that they are loved beyond measure by their mom and dad. Our Ashley is struggling. She is dependent on the security that she feels when Dave or I are with her. This is not easy. It would not be easy for any one's family to go through, but I am confident that we are doing what is right. It is normal for us to miss each other. It is natural for me to feel torn and to desire to be in both places. I miss Blake and Allie more than I could ever describe in the words of this journal, but I believe that God prepared all of this for this time in our lives and we will get through this. Together as a family, whole, intact, and stronger for it. I will be flying in to Dallas in a couple of weeks to spend the weekend with Allison at her last competition of the season. Dave and Blake will be flying here to be with Ash. When Blake goes to Nationals this season if we are still here (I pray we are not!), then we will do the same and I will travel to see him play. I wish it were affordable for us to go back and forth to all of their events every weekend, but it just isn't. Your love and concern for my broken heart is so appreciated. I just wanted to explain that we are not looking to change things. We really do feel that we are both in the right place for now. I pray I have not offended anyone with my explanation. That is not my intention.

I am now going to go rock this child who NEEDS to sleep so she will stop yelling , "MAAAA" at me. I tried to tell her we live in Texas, but not on a PRAIRIE! Thank you for checking in on our gherkin this morning. She is feeling ornery and this is how we like her. You are loved and appreciated. May God bless you today. Trish

This is not the first night I have felt torn. There have been many. I try not to dwell on the feeling knowing it is impossible. I have called Dave more times than I can count today. My Blake has been home sick. I know he really doesn't feel well because it would take a lot to keep him down. He is so driven and there is no way he would stay home away from his friends if he didn't have to. He called me last night in tears. He couldn't even talk. Eventually he just hung up the phone. His throat was hurting and he wanted me home. He didn't say it, but I knew it. I could tell by the mere fact that he called me to let me know he was sick.

As I talked to Allie today she was in a panic. She doesn't think her daddy knows how to throw a slumber party for girls. Her birthday is coming up at the end of February and we have begun the planning phase. Its a really big deal. This will be her first. It has to go right. She just wants me home. She doesn't say it, but I still hear it in her voice. Birthdays are a HUGE deal at our house. I love a well planned party. Down to the last detail, thats me. Unfortunately her daddy isn't really into details. I tried to assure her that I have written everything down for him and her grandmas. I have lists and lists of the way things should go. It doesn't help. She is still nervous since I won't be there.

Ashley is a mess tonight. She should be sleeping at this time of night, but instead she is spitting. Thats right, I said spitting. She thinks its funny. I told her I was not amused but I couldn't help but laugh. She is laying there on her back making it rain. She needs an umbrella. The crib is rocking side to side as she entertains herself by rocking and spitting. Every once in a while she yells, "Maaaa" to get me turn around and look at her acting out. I love this little one.
I have spent a good part of the night twirling her around and around the room(as far as her lead wires will allow us). I sing and she smiles. I kiss her and she spits. I tell her how much I love her and she nods her head like she understands.

I miss Dave. I talk to him all day about nothing. I just want to hear his voice. I wish he could come visit every weekend but it is just not affordable. Why couldn't Omaha be in Texas? I wish we were closer to home. Tonight I am curling up in my favorite chair to watch You've Got Mail. I have seen it a thousand times, but I don't care. I love it. It makes me think of home. I am just going to crawl under my blanket and pretend that I am on the couch in our living room with the kids all tucked in bed and Dave by my side.

My heart is torn. I want to be home. I long for the day that we will all be together again. The only thing that brings me comfort is the knowledge that He knows the desire of my heart. He knows that our family is torn and He knows that we need each other. Good night from us here in Omaha, Nebraska. Someday (soon I pray) we will be posting from our home in the great state of Texas. Take care. Trish

A blood urea nitrogen (BUN) test measures the amount of nitrogen in you blood that come from the waste product urea. Urea is formed when protein is broken down in your body. It is produced in your liver and eliminated from your body in urine.

This is a daily blood test that is run on Ashley. It gives us an estimate of how well her kidneys are working. If her kidneys are not removing the urea from her blood normally then she shows a high BUN number in her labs. Dehydration is one reason that causes the kidneys to not be able to remove this urea. This seems to be the reason for Ashley's struggles. Her FK (anti-rejection) medication can also cause her kidneys to slow down this process as well.

Once again it is the balance of Ashley's fluid status that seems to be the cause of her problems. We go from one side to the other very quickly. Just yesterday it was determined she was too overloaded with fluids so we backed down on her TPN. Obviously we backed down too much because by morning she was battling another round of dehydration. This fluid balance along with her feeding issues are the two things that keep us here in the hospital. Once these two things are figured out (barring any infections or virus or rejection) then Ash and I will be on our way to our apartment. Unfortunately we are a very long way from that day. Ashley has not been successfully fed in 17 weeks, and no one knows why she is not able to tolerate food. This is one area that David and I are working on. We would like to feed Ash breast milk rather than formula. The team has agreed to give it a try. They have never done this with one of their small bowel transplanted patient. We tried this with Ashley before her transplant in an attempt to get her short bowel to absorb but we were unsuccessful. We do not know if she will grow on it this time, but we believe it is worth a shot. After her new feeding tube is placed later this week we hope to begin feeding her. Our prayer is that it will be successful and that she might tolerate the milk better than the formula. It is a long shot. Ashley's issue is not really related to what we feed her, but to the shape of her anatomy post transplant. Dave feels led to try so I am going to follow his lead.

Now that Ashley is being re-hydrated her urine output is picking up. The concern with the increase in her fluids is that she may keep too much fluid on board causing her lungs to struggle. It seems as though one thing affects another and another and another. It is hard for us to think about being in this position more than four months post transplant. We definitely would have never imagined that our little one would not be able to eat or breathe. I try to keep my mind focused on the thought that God has plans to use us in some way in this hospital. There has to be a reason for us to still be here.

Once again your prayers and your faithfulness to our Ashley's story touches us deep in our hearts. We know how difficult it must be to follow the ups and downs that she goes through. We realize that many have drifted away from her journal because it is too emotional, but we pray that they were somehow touched by His hand as they learned of our Ashley. Thank you for loving her and for loving us. We hope to meet you all someday if not here then in Heaven. May God bless you. Trish

I must constantly remind myself that Blake, Allison, and Ashley are not mine. They do not belong to me, and they were not created to bring me joy. I am just the one who is blessed to have the opportunity to show them Who He is. They belong to Him. They were created to do His will and to be used in His plan, and to bring joy to the Father's heart.

This morning I am once again trying to find a balance. A balance between how very much I respect those who God has equipped to treat my Ashley's illness and the side that as her parent I feel I am being led to do something different for her. There is a very fine line. I would never want any of our "team" to feel as though I did not trust their decisions or respect their opinions because I do. When I approach them during rounds with our questions, our research, our opinions on what is being done with Ash I pray that I never offend them. I want to work with them, and I believe it takes both the team and David and I to make the best decisions for her. This morning Dave called to give me a list of things he would like for me to address during rounds. He told me had been praying over them for a week and that he believed this is the direction he would like to go. When I receive calls like this I begin to panic. I am the one on this end who must find that balance before I open my mouth. Praying the entire time that our wishes will be received the right way and not alienate any member of our team. So I took the plunge and voiced our concerns, our goals, our thoughts once again. I feel as though if we were keeping score that I won one and lost another. They listen, they discuss, they decide. I will not go into the details of what our wishes are for her care, but I will ask for your prayers as we seek different options that will hopefully bring our Ashley closer to home.

There is one main difference I see between parents and the medical staff. They have the medical knowledge that God has allowed them to obtain, but they do not have the understanding or experience of raising a chronically ill child. We approach the situation from two different perspectives and somehow we must meet in the middle and hopefully obtain the same goals for her. While doing this we must learn to respect each other and what we each bring to the table.

The role that I find myself in when parenting my Ashley is very different than any role I have ever been in before. I am not only her mommy, but an advocate for her. I must learn, study, research, pray, and make decisions that I have never been faced with before. My prayer is that God would continue to lead us in making the right decisions for Ashley.

As her mommy and daddy we are trying to do the best we possibly can for Ash. The whole time realizing that we have been given the job of raising her to bring glory to Him. As our children grow our hope for them is that they will not be afraid to dream big dreams, to reach for lofty goals, to stand for what is right, to change this world, to serve the Lord. As I think of the places around the world and the number of people who Ashley has touched I am humbled as I realize that even our tiny Ashley has already begun to fulfill her purpose. She has traveled to lands that I will never go. She has met people who I will never meet. She has impacted the world in ways I may never see. She is not mine. She is His.

P.S. We have had 2 wet diapers since this mornings post! Yeah!

There has been no reason to change diapers in our corner of the PICU. Ash stopped making urine yesterday evening. We have no idea why. Her last wet diaper was at 5:00p.m. yesterday. Throughout the night they came in and tried different things. A CVP line (central venous pressure) was connected to her at 4 this morning. It reads fine. I am a little nervous. I am now waiting to see her morning labs to check her creatnine and BUN. I am praying for urine. Please join me in praying that Ash would begin to wet her diapers. I will let you know what happens during rounds this morning. Thank you for praying. Trish

My sweet Ashley Kate just popped her eyes open from a late evening nap and began to grunt and reach and cry, "Mommmm, Mommm." I turned toward her expecting to discover that she was talking to me, but instead she was talking to her baby. As soon as I handed it to her she began to cover its face with tiny kisses. She patted it and squeezed it and kissed it over and over again. I giggled to myself thinking, "Surely she must have learned this from me!" I can only hope so. My hope for my Ashley is that everyday of her life she will feel loved by her mommy. I was so touched by her display of love for her baby. She already has the heart to become a mommy some day. Please God, let her grow up and have babies of her own to love, to cherish, to cover with kisses on their puffy cheeks.

I remember the first day we stood before a judge telling her how much we wanted to be Ashley's parents. We were asking her to sign an order allowing us to be with her at the hospital. At the end of the court session, Dave and I were the last two to leave the court room and the judge looked at us and this is what she said, "I am afraid you might be setting yourselves up to suffer from a broken heart." My husband responded, " I think its too late. We love her already." As we walked down the hallway and out of the court house the attorney that was assigned to represent our Ashley said to us, "You may have been chosen to be the ones to love her while she is here. Perhaps you will be the people that have been called to hold her for the days that she has." No one expected her to last long. No one thought my Ashley would survive. To be honest, Dave and I didn't even know. All we knew is that we loved her.

Loving someone is not always easy, but it is worth it. When you love someone you do open yourself up to become broken. Along with our broken heart for our Ashley came a love so deep that could only be given from the Father. There were many days early on that it seemed the door may have been closing, but then Dave and I would ask each other, "What if He isn't closing the door? What if He is saying to us how far are you willing to go? Are you willing to take one more step?" We would head out the door to begin what seemed to be the impossible and tell God, "We are willing, but You will HAVE to lead us. We have no power in this situation. We have no control. Please guide us if this is Your will. Take us where we need to go." I can not share the details of the difficulties we faced in order to hold our sweet Ashley, but I can share with you that the things that occurred, the places we were led, the events that were to unfold came only by the hand of an almighty God. We could not have orchestrated this adoption. We could not have made everything fall into place. We were led daily by the hand of God. He showed us time and time again when we were powerless to make her ours that He had a plan and a will for her life. Loving Ashley has been the easy part. Stepping back and allowing Him to take over every detail was not. There were days when I thought my heart would burst. There were many, many phone calls between those who knew the details of my babies life where I could do nothing but sob. My heart cried for my baby. My heart longed to be with her. My heart loved her. My heart was powerless. My heart had to become willing to be broken in order for Him to do His work.

Tonight as I place tiny kisses on my Ashley's cheeks I stand in awe of the place I find myself in. How privileged I am to be her mommy. How blessed I am to KNOW that He gave her to me to love. The days are hard, The days are long. The days don't always bring me understanding, but they do bring me closer to the One who is in control of them. I may never know why we must spend this time away from home. Away from her daddy, and Blake, and Allie. I may never understand why we are still in this PICU. I just know that my heart must continue to stay willing. Willing to be used even though I feel sad. Willing to be used even though I am confused. He has never failed to work His plan in Ashley's life. I don't expect Him to now.

Thank you again for loving her so much. Thank you again for praying for her. Thank you again for coming back and allowing me to empty myself onto the pages of her story. In the end, in the last chapter, my hearts desire is for Ashley's story to lead to His.

I spoke with Trish tonight after I got the kids a snuggled in bed and before I got me in the same place. Her heart is very heavy. Much time was spent just listening to the tears as I had nothing to offer. I cannot fix these things and I cannot promise a bright future because I just don't know what God has planned for our family. I do know that He has used Ashley to bring us closer to Him and closer to each other. So many times I have asked for your prayers for Ash, but tonight I ask that you pray for Trish. When you read this post please take a few moments a pray for a Mom who misses her kids. Pray for a wife who misses her husband. Pray for a sister who misses her brother and sisters. Pray for an Aunt who misses her nieces and nephews. Pray for a Mom who has been so close to so much heartache and loss for so long. Please pray that we would be re-united as a family of 5, not 4 one day soon. Thank you for praying for my wife.

DAVE

My heart is full of gratitude. As the days pass and the pages of Ashley's story are being written God continues to use people all around the world to bless us. He provides for us by using others and blesses us out of their thoughtfulness and generosity. So many of you have given of your time, your talents, your finances, and your hearts to a tiny baby girl and her family. I will forever be grateful.

It has been brought to my attention that some have wondered if Ash and I ever received the things they sent to us. I would like to extend an apology to anyone who may have felt that we did not properly say Thank you. I tried very hard to make sure that I thanked all those who have given to us in any way. I usually post my Thank you's on the "Thank you" page of this journal. Every once in a while I may write a thank you into one of my posts in her journal. Looking back at my actions, I now see that I should have kept a list of all the addresses and sent hand written, personal thank you cards to everyone. I am deeply sorry if anyone has felt as though I have been ungrateful. If you only knew my heart. I have deep regrets for appearing so ungrateful toward you. I have been touched so deeply by every one's generosity and thoughtfulness. I would have never intentionally hurt anyone who gave to us out of a willing heart. Please forgive me if you did not see my grateful heart. Please check the Thank you page if you did not know it existed and please accept my apologies. I will try to do a better job of showing you how very much your kindness has touched me. My heart is heavy as I think that I may have seemed selfish in my actions. It is easy to get caught up in the daily events that surround my Ashley's life and I now know that I should take more time to write my Thank you notes rather than typing them.

I am truly trying to do things the right way during this very difficult time and I do not wish to injure any of your feelings. You are loved, and your are appreciated. Thank you for caring so much. Love, Trish

I had the "privilege" of staying awake all night to enjoy my sweet Ashley. Around 3:00a.m. I finally decided it was me and her, in the chair, for the night. We rocked and rocked and finally by 3:30 she began to quiet her whimpering. We sang and we talked and we spent sweet moments watching the minutes tick by on the clock. I began to close my eyes for a short time and when I would peek at her she would be quietly staring up at me. I wish knew what she was thinking. The look on her face was so precious. Her cheeks all pink and puffy, her eyelashes, her tiny mouth, she was sweet. These are the moments that I want to seal away inside of my memory to never forget. Just me and Ash. Nobody else. I am so thankful that she kept me awake to enjoy some very private, very precious, times together.

I love my sweet Ashley so very much. As we sang and rocked I could feel her begin to slip into sleep. I was afraid to move her. Not only because she might wake up, but also because I wanted it to last forever. She is beautiful and last night although I was exhausted I am so grateful I was given the opportunity to enjoy how He created her. Every little detail.

Dave and Allie are enjoy sweet moments together too. He did attempt to fix those "zig zag crazy buns" yesterday and she was allowed to do her own make-up(at 8 years old). I had to get off the phone before I lost it. I begged him again to ask a mom to help with that hair do that even I can't get right. He told me it was under control and that he Allie were handling it. I am so glad she has a dad like that. The two of them are perfectly content to be cheering on there own without mom telling them how to do things. After the competition they grabbed Al's close friend and they were off to the Main Event to spend the afternoon goofing off. They had a great time and when I talked to her on the phone last night she told me she and dad were just hanging out in the hotel together. I am so glad they have this time together.

Ash's kidneys are making urine but her BUN is still too high. During rounds they are trying to decide if they should change her anti-rejection medication. Ash is four months post and has not had any issues with rejection so they think it might be safe to try a med that is easier on her kidneys. All of this talk makes me nervous. I just want to keep her organs safe. Kidneys included, but it seems that to make one happy it becomes harsh on the others. What a difficult balance her tiny body requires. I know that God knows the right combination that is required to keep it all going. I am going to take a deep breath and pray that He guides them to make the right decision for my Ashley.

Ashley is now sleeping and making sweet sounds behind me and I would like to join her. I pray that you all have a wonderful day. Thank you for checking on our Ashley today. Have a blessed one. Trish

The tears won't stop. They fall and they fall and they fall. There are times on this journey that I feel so strong. I feel as though I can do this. I could do this for a thousand years and never grow weary because I love her. Then there are times when I wonder what will I do if I am asked someday to stop doing this? How will I go on? I would never survive without her in my arms. As I travel this road with my beautiful Ashley I learn of more and more mothers who have walked a similar path and who have done it so faithfully and so beautifully. In the end they have had to say good bye and allow their precious child to go on to heaven without them. They have had to leave the familiarity of the hospital and return to empty nurseries with empty arms. I realize more and more that I am not strong. I pray this will not be me. I pray with everything inside of me that when I leave this hospital room that I leave with my sweet Ashley in my arms. Then I wonder to myself, "Why?" "Why do I think that I should be allowed to keep my baby when so many others were not?" I am still becoming broken.

I am broken before the Lord tonight. My heart aches with the knowledge that my Ashley, my beautiful gift from Him is not any different than the hundreds of other critically ill children whom He has received unto Himself. She was created just as they to do His will. To bring glory to the One Who created her. When she has done what He has asked her to do then she too will go home to be in heaven.

Tonight I am realizing that there is so very much work to be done in my life and in my heart. I cling to her life and to her every breath. I feel as though if she no longer breathed that I wouldn't either. If she no longer smiled then neither would I.

As I type she lays behind me in her crib calling my name. The name I wasn't given the day of my birth, but the name that defines me. "Mommmm" she calls. I love that name. I love to hear her say it. I love to hear Blake say it. I love to her Allison say it. I love that the Father has given me the opportunity to become it. He has allowed me to have a glimpse into His heart. There is nothing He would not do for His children. He was willing to give His life for them. For me. For us. I now understand how you could love someone so much, so deeply that you would give yourself for them. If only I could give my life so that she could keep hers. If only I could take the pain on myself so that she did not have to feel it. This is love. Love so deep that her happiness come before my own. Her survival is more important than my own.

I am realizing that I can't do this. Only He can do this in me. I don't have the strength to be this person that He wants for me to be. He will have to give it to me. I feel as though I'm failing. I am failing the biggest test I have ever taken. I pray that He will strengthen me. That He will equip me to be the person He wants, the example they deserve, the mom they can count on to be strong. Tonight I am praying because I know that without Him I can't do this.

How amazed I am as I watch my little Ashley play. She has know idea how very sick she really is. She has no idea how close she came to leaving. She has no idea how many times her mommy and daddy have stayed awake at night pleading for her life. She doesn't even know. Her daddy always says, "Somebody forgot to tell her she was supposed to be sick!"

Her innocence is beautiful. I am more than thankful that Ashley doesn't know her life is different from anyone else's. On the good days this is what she does. She plays. She laughs. She claps her tiny hands. She smiles. She growls. She "reads" her books. She hugs her babies. She rests. She rocks her mommy. She talks to her daddy. She plays with her best friend(the baby in the mirror). She kisses her pictures of Blake and Allie. She causes trouble. She is wonderful. She is trusting. She is precious. She is just Ashley, and if you were to ask her she would tell you how very blessed she is. Life is good as far as she is concerned. She is busy living each and every moment of her little life to the fullest. She grabs on and gives it all she's got. Oh, I love this little lady with all of my heart!

The precious thing about Ashley is that she doesn't know. Her spirit is amazing. Her strength is indescribable. When she smiles it lights up the room and blesses your heart. God chose her to carry out a part of His plan. She teaches me to be thankful. She teaches me to pray. She teaches me to trust. She teaches me to love. She teaches me the value of life. She teaches me to appreciate what He has blessed me with. She teaches me to look for the heart of God. She teaches me to find the good in people. She teaches me that I don't have a moment to waste. She teaches me to take the time to invest in others and to look outside of myself. She teaches me that there is something to be said for NOT knowing.

Today I am appreciating the fact that my Ashley doesn't know how to live her life any other way than she does. I am glad that she doesn't count the number of days spent in this PICU. I am glad she doesn't keep up with the number of times she has been down. I am thankful that He made her with this innocence, and that He allows her to just love being who He made her to be. It has been a good day for Ash. She has played and rested and played and is now resting. Nothing really happens on the weekends. We just wait. Monday she will have another echo cardiogram to make sure the fluid did not re accumulate around her tiny heart after the drain was pulled. If it comes back clear then they tell us all is well with her heart. No lasting damage from the arrest and no more danger. We will begin to figure out what day to take her down to place the G-J tube, and then we will go from there. Praying the entire time that somehow He will make a way for our Ashley to eat, to grow, to live. I am believing that He will. Expecting a miracle to be done in His own time.

There IS something to be said for not knowing. Along with the lack of knowledge comes a lack of worry and the peace of trusting. He made her to trust Him and He made us to do the same. I am back to working on that. Trust. In His time. In His will. In His plan.

Please remember baby Lexie and her family in your prayers. They have a long road ahead and they will need our support. Thank you for loving Him enough to love us and others as well. You are appreciated. Love, Trish

I love it when the sun comes up each morning. A new day full of promise, yesterday is gone and I don't need to worry about tomorrow. Today will be enough. It will hold all that He plans, and Ash and I will take it a little piece at a time. I am excited to see what she will be up for today. She looks better and better each day. I am amazed when I look over at her and see the potential that she has. Sometimes I still can't believe that I'm the one He chose to be her mom.

Tomorrow is our friend Kiley's 1st birthday and she is having a party here in the PICU. I am going to sneak out during Ash's afternoon nap and go pick up her gift. I think Kiley looks good. She too has come off of the vent and now her Mommy and Daddy get to pick her up and hold her all they would like. I am so excited for them. I wish Ash could attend the party but she will just have to wave from the doorway because both of our girls are in isolation.

Ash is playing a little more each day. Last night she began smiling and laughing once again and I have to tell you it is just what I needed. Yesterday was tough and emotional for all of us here at the PICU. I am so thankful that Ash felt like being held and wanted to play last night. It was wonderful. This afternoon I hope to get a mat in here and play with her on the floor with her "giant" dinosaur she got from her Aunt Kathy. It likes to roar just like they do!

Dave and Allie are in Dallas preparing to go on the floor around 1:00. He keeps threatening me that he is going to do her "zig, zag crazy buns". There is no way he could pull that hair do off. I begged him to just let Kristi or Regina do it. I hope he listens to me. Al actually wanted him to do it for her. I told her I just didn't think it was a good idea. I will be anxiously waiting to see the pictures tonight. He was so excited to have a weekend with just the two of them. I love this guy. There aren't too many dads who would be excited about sitting through 100's of cheer squads all performing to deafening music routines. He just jumps in with all the moms and acts like its the only place in the world he would want to be. I can't wait to hear all about their trip.

Blake is on cloud 900! Baseball starts tomorrow. What would we do without it? This kid lives to play the game. We are more than blessed to be on the Tarheels. It is such a great group of families and we love it. I wish I could be there to watch him. Ash and I love to sit at every practice and watch him play. He promised to "hit the ball to Omaha!" for us so I am watching out the window.

Thank you all so much for your prayers and your support. The weekend will be long as we wait to see what will happen with Ash's feeding situation. I hoped that there would be a different option than the G-J because it obviously doesn't work, but during rounds they seemed convinced that this is all we can do. I am really going to have to pray about this. I appreciate each of you who chose to come to Ashley's story today. You mean so much to me. Have a terrific day and enjoy your families. Take care. Trish

As much as I hate to admit it, I do live in fear. As I wake up each morning in this PICU I can't help but say thank you over and over again that we made it one more day. I know that fear is wrong and I know that it is not of God, but I don't know how to make it go away. I am scared.

Tonight the world lost. It lost something so very precious and it breaks my heart to know that so much of it has no idea who we had to say good bye too. I only loved Ginny from a distance. I only knew her as our neighbor from across the hall, but there was something so precious about this child. I watched the battle for her life. I cheered her on. I prayed that God would ease her pain. I so desperately wanted her to beat the odds. Over the last couple of months I grew to love not only Ginny, but her Grandmother also. She came. She sat. She cried. She comforted. She prayed. She never failed to stop and check on my Ashley(although she sometimes called her Amy). She put my Ashley on the prayer list at her church. Grandma loved Ginny. You could feel it. When she talked about her you could hear it. As I passed her in the hall tonight all I could do was pat her on the shoulder. Such a simple touch. I just wanted her to know that I too grieved her loss.

I just came in from saying good bye to Ginny's grandmother and Father. They hugged me tight and whispered for me to fight hard. "You have a long battle before you, and you must be strong." I cried and couldn't speak. I whispered to them that I loved her and that I would never forget her. Losing her is hard. It frightens me. It makes me wonder, "Do any of them make it?" We lose them every week. This is killing me and I don't understand why this hurts so bad. Will my Ashley make it? Ginny fought for 14 years and tonight she has been received. Received by the One who created her. Received to spend an eternity free from the body that caused her so much pain. I am thankful for that.

Ashley lost her G-J tube today. It had coiled up into her stomach and she has been violently vomiting for most of the day. They pulled it out and I begged them to give her some time. I don't think she is strong enough to go through another procedure that would place her on the ventilator. Ash is breathing better than she has since her transplant and I am scared of losing it. They have agreed to give her a week to get stronger before taking her down to place her 5th one since her transplant. I pray for God to do BIG things in the next week. I know He can make things change.


Losing frightens me. I know I am blessed to have today with her. I am thankful that I get to hold her tonight. I am reminded that they all belong to Him. He chooses to share them with us for a time. I have to live today and not fear what tomorrow might hold. I am blessed. She is still here and she has not lost. She still fights. She still calls out "Mama" when she wants me to hold her. She pats my face and steals my glasses. She holds tightly to my fingers and squeezes them to let me know she loves me. If I ask her, "Ashley, do you love your mommy?", she replies with a nod, "Yes!!!"

Here goes my stab at the emotional girly stuff.

Lately I have been thinking more about the woman God put into my life. He had a wonderful plan for me and I am so thankful that he chose me to be Trish’s husband. As hard as it is to live so far apart I can see how God is using this situation to teach me more about the person he chose to bless me with. I have read that when a man and a woman get married they are to become one. One of the reasons this time apart is so challenging is that Trish and I have become one and part of me is missing. She gives so much to me. She gave up her ambitions, goals and dreams so that I could pursue mine. While I was selfishly pursuing my goals she was selflessly allowing me to do so. After surviving way too many years of school and starting a private practice with all of its challenges it has become my job to make a living, and her job to make living worthwhile. She has done her job well. One of our highest priorities when we began our family was for Trish to stay at home and be the mother to our children we believed God called her to be. We have been willing to give up many of the more material possessions to make that priority a reality. Often friends would ask us why we drive the old cars we drive. Why didn’t we just go out and buy a new one. Why were we living in a duplex, why didn’t we just go buy a new house? When we did get a house some wondered why did we get an older, smaller home? Why not a nicer newer one in a better neighborhood? Simply, it was our priority to raise our family the way we believed God called us to do it. We passed on the new cars and the fancy house because we felt we needed to honor God for blessing us with children. God has blessed our effort and blessed my kids with a wonderful mother.

Ashley’s Story has taught me so much. I learn something new each time I read a new post Trish has put on the journal. I am amazed by her writings. It is exciting to see God use my wife to teach me lessons He wants me to learn. It is exciting to see the spiritual growth in her and us as a family. God is using some pretty hard times to grow our faith. I pray that we are growing in our marriage even with the distance between us. I pray that when Trish returns home I will be a better husband and father than when she left. I pray that I will be more of a gentleman. I pray that I will be a better provider not only financially but emotionally and spiritually as well. I pray that I sacrifice more to make her happy. I pray that I will be a better listener, not just try to figure out a solution and fix the problem. I pray that I will be easier to talk with and more sensitive to her feelings. I pray that I would admit my weaknesses. I pray that I would be the one she comes to when she needs someone to talk to. I pray that I will listen more and remember more. I pray that I will make her feel loved and cherished. I pray that I will have a kind heart. I pray that I will be more appreciative of all she does for our family. I pray that I will be able to make her laugh more. I pray that I would be a positive role model for my kids. I pray that I will give more to her and to my family and focus less on my personal wants and needs. I pray that God would mold me into a better husband while she is away.

As I think about why it is so hard to be apart it is not the daily things she did to keep things going. (Maybe I didn’t appreciate enough all the details of what she does everyday). No, it’s not that stuff, but it is the intangible things she brings to my life that I miss so much. It is being able to watch her show me the good in people even when I think they are bad. It is the way she has taught me love everyone even when they are unlovable. It is how she is teaching me to see people as Christ sees us. It is her compassion and sensitivity. It is the way she nurtures and provides for our family. It is the attention to details that she is aware of that I don’t do so well on. It is the way she holds my hand under my pillow every night as we fall asleep. It is her loyalty and love for me when I am not always the easiest one to deal with. It is the way she puts her trust and faith in me as a husband and father. It is the commitment she has to our marriage. It is the positive effect she has on me when I walk in the door after a particularly long day at work. It is the way she turns our house into a home. It is the way she brings feelings and emotions into my life of logical decision making. It is the way she will put God first, family second and only then all the rest of the stuff in life. It is the way she takes the time to make sure each one of our children feels special. It is the balance that she creates in my life. It is when I feel her hand reaching for the popcorn as we share a bowl while sitting next to each other on the sofa watching a movie. It is the funny songs she sings to me that absolutely drive me crazy. It is wrestling with her and roughhousing with each other. It is playing a board game with her. In general it is that she is my very best friend. It is that she is part of me and she completes me. We are one.

Dave

This morning my heart sings and my eyes fill with tears. I cry today not out of desperation or fear or longing or despair. I cry today because as I woke I am reminded how truly wonderful my life is. How blessed I have been. I pray I will never forget to pause long enough to see how He has given me more, so much more than I would have ever dreamed.

I think today will be a good day for my sweet Ashley. This morning we woke to a new day. Feeling refreshed and well rested in our new room. Last night Ash and I were allowed to move to the other end of the PICU. The rooms are larger, they are nicer, they are more private, and much more comfortable. We both slept very well. It is so quiet and peaceful in here. I closed my eyes and just became still. Still enough to listen. Still enough to just rest in the knowledge that He is still with us. How thankful I am He knew my hearts desire was to be moved to this end and He gave it to us. It was such a blessing.

This morning Ashley had her chest drain removed. I was very proud of her. She is so very tough. It was painful for her, but she made it and now she is one tube free. What a good feeling this is to see reminders of such a difficult night begin to disappear. In some ways I would like to forget the events of that night, but in other ways it reminds me of His goodness, His grace, and His mercy. She could have been lost that night, but He chose to allow her to stay. Thank you Father. My heart sings with joy each time I look in her crib and see her sleeping so peaceful.

I held her for a while this morning and she seemed so comforted by my touch. I know she is getting better and stronger. My arms ached to hold her for so many days and now I hate to put her down to let her rest. I would hold her forever if she would allow me to.

As I look around our room and see pictures of my precious children I long to be with them. I miss being there mom so very much and my tears fall. As quickly as I begin to cry, I also smile with the knowledge that He chose me to be their mom. Of all the girls in the world He allowed me to love them. Allie will be cheering in Dallas this weekend and Blake will have his first baseball practice of the season. They are both so excited, and this makes my heart sing.

So today I have a song in my heart and I am feeling so blessed. Please remember to pray for our friend Lexie as they travel to Dallas today to see a new team of doctors. Also sweet Ginny is in need of your prayers. She is still with us, but they don't expect her to stay long. Thank you for coming to Ashley's Story today. You have blessed me with your presence here. Love, Trish

I think I have finally put my finger on it. I have been trying to figure out what in the world is making this week so hard on me? Every where I look I see blessings falling around me. Ash is getting better. Blake and Al are having a good week. Dave is his happy, optimistic self, but me? what is my problem this week. I just feel really down. Tonight I think I found out why. I miss it. I miss seeing it. I miss looking at it. I miss Ashley's smile. That little smile that has a streak of ornery in it. Its that smile that makes me know everything is going to be OK. Its that one thing that she shares with everyone who walks into her room. Its gone. It has been gone for 10 days and it makes me so sad that I can't see it. I pray that it will come back.

I did hold her today and as soon as she calmed and began to settle into my chest I instantly began to cry. I have missed her so very much and just to be able to feel her relax into me even though it didn't last long meant the world to me. I really needed that today. I love this little girl so very much and I wish I could make this all go away for her. It hurts to see her struggle, but even as I watch her fight another night I am blessed. Our sweet friend Ginny is struggling even more and to think about all she is going through is very, very hard on all those around. My heart is broken to think that she may not be here tomorrow or the next. I just wanted things to be better for her. I wanted her to get strong enough to have another transplant and I wanted her to live. I don't want for her to go. She has the most amazing spirit and I have grown to love her from afar. My prayer for her now is that she might find peace. Her little body has endured so much and if He does not will for her to survive then I pray that He will show mercy on her and allow her to rest. My heart is heavy for her.

Tonight Dave and I have been shown how very blessed we are. We have a family. We have a warm home. We have food on the table. We have a business that allows us to provide for our children. We have a faith. We have hope. We are reminded that there are precious people in our home town who do not have what we have. They are cold. They are hungry. They are desperate. They have souls that hurt and bodies that have been abused. They have lost all hope and they need to be shown the love of Christ. I pray that we will never forget that He endured the cross for them too. His grace is sufficient for them. My hope is that we will make a difference to those who feel as though they have nothing. Nothing to live for. Nothing to keep trying for. I hope that my children will see the value in those who others do not. I pray that they will remember that we loved them and that Jesus died for all. It wasn't just for us. Father, only you know the burden we carry in our heart tonight. I pray that You will show yourself to those who feel as though they have lost it all. Please touch them tonight. Keep them warm. Help them to feel Your love and Your presence in their lives. Thank you for blessing us so richly. We will forever be humbled by your grace.

Good night from our room. We are honored to have the opportunity to share our Ashley's story with you. Thank you for loving us and for loving her. Trish

I just spoke with Ginny's grandmother and she shared with me that Ginny is bleeding uncontrollably from every where. They are not giving the family any hope at this point I had no idea things had gotten this bad. Ginny had been Ash's neighbor across the hall for the last 2 months and she was moved to the other end last week. Ash loved to wave at her from our door way. They are having a meeting this afternoon at 3:00 to decide what to do. My heart is broken. I love this little girl. Her smile is contagious. I wish there was something, anything that I could do. Please, please pray for Ginny. She is now on the ventilator and is no longer waking up. I know she is a believer and more than anything I pray that God would give her comfort, give her peace, ease her pain. I can not bare the thought of her lying there frightened or scared. God, please hold her today. Please let her know how very much she is loved.


Dave just called me to request prayer for another one of Ashley's friends. Her name is Lexie and she lives in our home town of Longview. Ash and Lex are close friends. We love this little one so much and we ask you to please pray for her. They have found some type of cancer in one of her eyes and I know her parents and big brother must be frightened. They will travel to Dallas tomorrow to meet with some specialists and they will discuss treatment options. My heart is heavy just knowing that they will be facing this situation. Please pray for Charlie, Melissa, Austin, and Lexie. They are precious to us and I know they could use your support.

Thank you for your willingness to pray not only for our Ashley but for those who she loves. I appreciate each prayer you send on Ash's behalf and I know these families would treasure them also. I have come to depend so heavily on your support and I didn't know where else to turn. Thank you. Trish

I feel as though this is the game we are playing. " Ashley, You may take two baby steps forward." " Mother, may I?" "Yes, you may." "Ashley you may take 2 giant leaps forward." Off she goes forgetting to ask , "Mother, may I?" so she is forced to turn all the way back around and start the game again. Today I see my Ashley taking those two baby steps forward in some directions and a couple of baby steps backwards in others.(so thankful not to see any giant leaps backwards!)

The good news during rounds is that we are beginning to feel comfortable with her fluid status. Her BUN(blood urea nitrogen level) is continuing to trend down. This morning it was at 40 down from last nights 52. We are taking baby steps toward the goal of under 20. The good news is that with these baby steps her kidneys are becoming happier and happier. Happy kidneys make for happy parents and happy doctors! The bad news during rounds is that the TPN continues to affect Ashley's liver and her enzymes are climbing. Again they are only taking the baby steps, but the steps are going in the wrong direction. To combat the climbing ALT and AST numbers we are turning off her lipids (this makes me so happy!) and we are changing her feeds to 15 ccs an hour and her TPN to 15ccs per hour at an increased caloric value of 20. The bad news with this change is that Ashley is gagging and nauseated and I am praying she remembers to ask, "Mother may I?" before she is sent tumbling back to the beginning from a vomitting episode. The good news is that her bilirubin is only a .7 and this makes me smiley. More good news is that Ash continues to breathe on her own without ANY oxygen support and her sats are between 95 and 97. Only God could bring about this change in her lung status in such a short period of time. She hasn't even been off the ventilator for a week so I consider this to be two giant leaps forward in the right direction.

As I think about all that we have been going through in the mind set of this little game what a lesson I am learning. This is exactly how I sometimes feel in my walk of faith. There are times when I remember to ask, "Father, May I" and He responds with "Yes, you may take those two giant leaps forward." Yeah, me! Then I turn around and forget to ask and before you know it I am back at the beginning left to wonder, "What did I do wrong?". Silly me, I forgot to ask. No wonder I am struggling. He wants to bless me. He wants to prosper me. He wants me to depend on Him and not take my eyes off of Him. He just wants to know me and love me. All I have to do is remember that I was not created to live this life on my own. Always taking giant leaps forward and skipping over those crucial baby steps. Sometimes I need to be sent all the way back to the beginning so I can start over and just remember to talk to Him.

I think Ash is beginning to feel a little better this morning. Not any giant leaps, just those tiny baby steps, but I am more than thankful for any movement as long as it is in the right direction. Thank you for your prayers. Thank you for continuing to put up with all of my ramblings. Thank you for loving this little one who has been such a gift in my life. I hope you all get a chance to play the game today and let me remind you it is so worth it to pause before stepping and ask, "Father, may I?". I love you guys. Trish

Awake and crying. That's what my sweet Ashley is doing. She should be all snugly and sleepy at this time of the morning but she is not. She has developed the saddest cry you have ever heard. Ash never used to cry. She has always been the happiest baby. Tonight's cry is breaking our hearts. If she even thinks you might touch her she starts to scream. How I wish she wanted to be held. I would gladly rock her all night if she would let me.

Ash has so many things coming out of her tiny body. I was changing her clothes tonight and suddenly became overwhelmed with all that has been done to her. She has a central line in her chest with 3 lumens coming out of it. She has a new incision which she is clawing off the bandages tonight. She has a drain tube coming out of her chest which is very sore and irritated. She has a G-J mickey button in her abdomen. The G has a tube connected to it with a drainage bag on the end. The J has an extension connected to it that runs into a tube that has her feeds running through into the jejunum portion of her new intestine. She has a stoma with part of her new bowel coming out of it that is covered with an osotomy appliance and bag. She has a new dressing over her femoral artery where her art line was pulled yesterday. It is very bruised and sore. She has 3 lead wires connected to the monitor and a pulse ox on her big toe. Wow! When I look closely at all that must be managed while moving her, picking her up, or dressing her it does get overwhelming. If you were not used to it you might be scared of breaking her. No wonder she is uncomfortable tonight.

If you can see past all of that stuff this is what you would find. A beautiful little girl with dark brown hair and brown eyes. A tiny little nose that her mommy absolutely loves. Big round cheeks that have a constant shading of pink across them. The sweetest little mouth that you have ever seen. A pattern of miracles permanently etched across her chest and abdomen that remind us of all the that He has done. The littlest hands with the longest fingers that have been created just for her with the fingerprints that have been left all over my heart. The most incredible feet with 10 yummy toes for her mommy to kiss a million times. To see Ashley is to see a work of art. A masterpiece that is being created in His time. Each day He continues to add to this creation that He calls His own. Every moment of her life He is using to write her story that must ultimately lead to Him. She is amazing. She is wonderful. She is priceless. She is willing. Oh, how I admire my daughter. Her strength is inspiring.


Her crying has ceased and she is now quiet. I sit and wonder how, when, what. How will He use her? When will He show us? What will she do for Him? I pray that she makes it. I pray that she is given the opportunity to live, to grow, to serve. I pray for her hurts to cease. I pray for my daughter. My words are repetitive. My words are not adequate. My words don't always express my thoughts, but He hears. Her crying has stopped and mine has too. Now I hope to sleep. Thanks for listening. Good night, again. Trish

Some days I find living here in the PICU to be a struggle, and other days I think I just accept that this is now where Ash and I reside. There are times when the halls are filled with friendly faces and then there are other times when this can feel like the loneliest place on earth. Most people who work here happily return a smile and don't mind visiting with Ashley and I for a few moments, but there are a few that I feel as though I will never get a kind word from or a friendly smile. I learned a long time ago that I am not going to automatically be drawn to every personality around me. Not every one I meet will become a close friend, but every person I come in contact with does deserve kindness from me. It doesn't take much to greet each other with a smile or a genuine kind word. You never know what a difference you may make in an other's life.


As I pray in the mornings I find myself asking God to use me to make a difference in the life of someone. I never dreamed that God would use my tiny baby to make me look harder to find the good in others. Even those around me who fail to respond with any type of kindness, I am trying to find the good in them. Honestly this is not my nature. It would be so much easier to just take the attitude that if they don't like me then I don't like them either, but as I look across the room and see my Ashley I realize that she deserves more than that from me. She deserves the kind of mom who is willing to look past hurt feelings, look past unkind words, look past the pain of gossip, look past hurtful actions and be willing to forgive. Tonight I am trying to be a better person. I am trying to be forgiving. I am trying to be kinder. I owe Him that.

How I wish that I could change the situation that I find us in. How I wish that my Ashley had been given a healthy body. How I wish that I could take her home where we would be surrounded by family and friends, but since I can not then I pray that our walk here in this PICU would only be a reflection of His love. I pray that this situation we are in will make a difference in the life of someone. I know that the lessons I learn from Ashley are changing my heart, my life, my faith, and my walk, and I am thankful that I can see that He is working in me.

Ash is struggling to bounce back. This last "crash" was very, very difficult on her. She is making improvements in some areas and she is now breathing on her own and for these things I am truly thankful. I miss typed her BUN level this morning. It was a 70 not a 17. If it had been 17 then it would have been in range and things would have been terrific, but the 70 did improve through the day to a 52 so I know we are getting closer.

Even though it has been a hard and lonely day I take great comfort in knowing that so many of you are praying for us and getting us through until the day that He allows us to go home. I don't know if I tell you enough, but each of you are "making a difference" to us. Good night from Omaha. Love Trish and Ash

So sorry for the late update. I typed one couple of hours ago and when I went to post,POOF!, it was gone. The blogger server was down and has just become available again. So I will try to remember all that I said.

The main discussion during rounds centered on Ash's fluid status. Looking at her today I thought for sure they had filled her tank. Her face is puffy and round and she looks too full to me, but her labs still showed that she is too dry. Her BUN was a 17 and this is not the number we had hoped to see this morning. Although I am very concerned about putting so much fluid in her so quickly the team decided to increase her feeds and her TPN to 30. I am frightened that they will go too far the other direction now and that we are going to start struggling to breathe again. This is such a dangerous balancing act! We had hoped that most of Ashley's agitation was coming from the dehydration, but today we see that it is primarily withdrawal from the narcotics. She is miserable. My heart is broken for her as she struggles with the most extreme withdrawal I ever seen her go through. She is literally ripping handfuls of her hair out. She is almost entirely bald on the left side. I tried to explain to the surgeon that she was going to lose all of her hair and become bald if we didn't figure something out soon. His reply, "Bald isn't too bad. My boss is bald and he looks pretty good." I replied,"Your boss isn't meant to be a princess, and Ash is struggling to keep her crown on without any hair!" He laughed and warned me not to tell his boss he was not a princess. I'm not afraid of his boss and I would gladly take our plight to him.

All in all her kidneys are working but they are not happy. The surgeon told me that happy kidneys come before beauty and although I agree with him I am struggling to see her go through all of these extreme changes. I am worried about how these massive fluid fluctuations will affect her body. I know it can't be good on her.

As long as she is sleeping she is ok. As soon as she wakes the whimpering and the hair pulling begin. Our only hope for her to keep that crown on is to place a large bow under it to hold it up on her bald head. I will adjust to her new look. It's just been a very tough week. I am trying to keep her room as quiet, as dark, and as peaceful as you possibly can in all the hustle and bustle of a PICU. I pray that she will begin to feel better and better in the coming days.

Thank you for praying for her kidneys. It looks as though we might have dodged the dialysis machine. I appreciate each and every prayer you have sent on her behalf. It means so very much to know that you care.

P.S.
Thanks Krista for the fabulous bow and p.j.s. The monogramming is so Ashley.

I am happy to report that Ashley's kidneys have picked up and she is making wet diapers! She looks much better this morning, but she is still feeling really crummy. When she is awake she continues to whimper and pull out her hair. I am praying that she might start feeling better so that I can hold her and try to comfort her. To this point I have not been able to rock her or pick her up because her tiny body is so sore. It makes her miserable to be touched and so I have been waiting until it is good for her. I hope today is that day.

The doctors have not made morning rounds so I do not have a plan for the day just yet. The cardiologist did pop in early this morning and told me that from a heart standpoint she looks really good. What a blessing it was to hear those words. They are going to leave the drain in her chest at least through the end of this week and they plan on doing another echo cardiogram on Friday to look at how much fluid remains around the heart.

I have never been so happy about having to change diapers in my life, but this morning I can gladly say it has brought me great joy. God continues to do big things in my little gherkins life and even when things don't go exactly the way I would hope for them to I can still see His hand protecting her. What a comforting feeling it is to know that He is always there.

I will up date later after rounds. My prayer is that each of you will be blessed today. You are so appreciated. Thank you for checking in on Ash this morning. Take care. Trish

I was not one of those little girls who had always dreamed of becoming a mommy. I don't even think I ever thought about it. I don't have memories of playing baby dolls or memories of loving babies. I never even babysat as a teenager.When Dave and I got married we didn't even discuss a plan for starting a family. We were young. We were cool. We were both in college, and becoming a mommy was the farthest thing from my mind. At least in the beginning. Eventually we knew that we wanted children. We wanted children of our own, but we also wanted more. We were so willing to expand our family through adoption if only God would allow.

Let me tell you that it only took 1/2 of a second for me to develop a mothers heart. As soon as the stick showed a plus sign I instantly fell in love with the idea of becoming a mother. As I began to grow(and grow and grow and grow) during my pregnancy with my Blake, my "mothers" heart began to grow too. The first time I saw my son's face I knew that I had been given the best job in the world. My heart has never been the same.

It just came naturally to me. Those mommy instincts. I loved being Blake's mom. We would spend hours and hours just him and I as Dave was in school. We would play on the floor in his play room building blocks and singing songs. I loved everything about him. I remember when I found out we were expecting another baby. I would sit and watch Blake play and I would cry. How could I do this to him? How could I ever love another baby as much as I loved this little man? Blake would come over to me and say," it ok mommy, don't cry." He had no idea what was about to happen.

The morning my beautiful Allison was born Blake came in from Sunday school and walked over to my bed. He peeked at the bundle of baby girl that was in my arms and he said, "Allie Girl". Thats all it took. He fell in love with that baby sister. I knew it would all be ok. My mothers heart had doubled. Not only was I in love with the idea of having a son to raise but now God had given me a daughter. Oh how I loved her. She was the most beautiful baby girl I had ever seen. My mothers heart was overflowing.

I loved being a mom. I had no desire to ever become anything else. God had given me the heart of a mother and I took my job seriously. They were the best things that had ever happened to me. As each year would come I would tell Dave I just wanted to stay right where we were. I was happy. I didn't want for them to grow and change. I loved our life, but with each passing year things were just as good as the previous one.

The day that I received the call about my Ashley's birth was the day that I knew without a doubt that I was created to be the mother of three. I had no idea she was coming. I had no idea she had been born the night before. I had no idea what she looked like. I had no idea what to expect. I had no idea where to begin. All I knew was what I felt inside of my mothers heart. I loved her. As much as I loved my Blake the minute I knew he was on his way. As much as I loved my Allison the moment she was placed in my arms. I loved my Ashley and I wanted to be with her more than anything. In the deepest part of that mothers heart that God had given to me I knew that she was mine. Mine to love. Mine to hold. Mine to protect. Mine to fight for. Mine to pray over. Mine to rock. Mine to hope for. Mine to dream for. Mine to teach. Mine to mentor. Mine. He had spent years preparing my heart to mother this child. This amazing child.

The hardest thing about this part of Ashely's story is the separation. In my mothers heart I dream of the day that I am with all three of my children. I had no idea that I would ever spend days apart from them. The first 2 weeks of Ashley's life I was away from her. During those 2 weeks God was working in my heart. He was busy doing big things. He was preparing me to be the mother that He wanted me to be. Not just the mother who taught her children to read. Not just the mother who picked out their clothes. Not just the mother who made sure they made it to practice on time. Not just the mother who took care of them. Not just the mother who tucked them in at night. He was teaching me to be the kind of mother who could trust Him to care for her children. He was teaching me to be the kind of mother who would surrender to Him.

I don't mind telling you that this is hard for me. This is the most difficult thing I have ever done. I miss my Blake and my Allison with everything inside of my mothers heart. I hurt for my Ashley in the deepest part of my mothers heart. My heart longs to lay next to Blake and talk about baseball until he is so tired he falls asleep. My heart longs to smell the sweetness of my Allison's hair as I tell her goodnight. My heart desires to tuck my tiny Ashley Kate into her crib in the nursery we built for her in our home. Most importantly my mothers heart has learned to desire for them to love God with all that they are. My mothers heart has learned to pray for them with an earnestness that I had never before. My mothers heart wants to protect them from being hurt by the pain that is found in my Ashley's story. My mothers heart wants for them to see the beauty and the blessings that come from her life.

Tonight I am thankful that I was given a mothers heart. Of all the things in the world that I could have been blessed with this is what He chose to give me. I will forever be humbled by the trust that He has placed in me. I pray that someday my children will be able to see what is inside of their "mothers heart." I pray that the Father continues to mold my mothers heart. I pray that when He looks inside of it He will find a thing of beauty.

I am looking for blessings today. No matter if they are large or small. I just want to wrap myself up in them and be thankful. Ash has had not one, but TWO wet diapers today. They weren't heavy, but they were WET. Every little drop counts as we wait for her kidneys to kick back in. My hope is to be able to re-hydrate her before anyone feels the need to mention the word dialysis. They just checked her electrolyte panel and the BUN and creatnine are making small moves in the right directions. More blessings.

She is finally resting and I am counting that as a blessing. Her little body needs to sleep so that it can become strong again. Her wimpering in her sleep has stopped and I am finding the silence in our room to be a blessing. I think she is becoming a little more comfortable as we slowly introduce more fluids into her system.

She is now receiving her monthly cytogam infusion. Today I am counting her central line in my list of blessings. She will require this monthly infusion for a full year after transplant and once her line is pulled she will have to have an IV placed each month. Today I am thankful she did not have have an IV.

One thing I have learned through my Ashley's story is that there will always be blessings around. I just have to be willing to look for them and acknowledge them. My Ashley is here with me and that is a blessing. She does not have an infection anywhere and that is a blessing. Her heart rate, respirations, and oxygen requirements are coming down. All of these things are blessings. There is no ventilator in our room. Big Blessing! I can hold her hand, memorize the details of her face, and kiss her tiny toes as long as I like today and I am feeling blessed. God is really good to me.

One week ago last night I stood in the hallway outside of my Ashley's room and begged God to spare her life. One week ago this morning I watched them prepare my Ashley for heart surgery and once again I begged God to spare her life. Four months ago today we woke up asking the Father to provide a way that Ashley's life might be spared. On all three occasions He heard the pleas that came from my heart and today I will hold our sweet baby girl. Not because of who I am or because of anything I have done. Only because He is who He says He is. How could I ask for more?

For years I struggled with this question. I had already been given so much in my life. I had a Blake. I had an Allison. How could I ask Him for more? Was it wrong for me to desire to parent another mothers child? As I continued to struggle with my requests Dave came to the Father out of a heart of willingness. Willingness to be a father to our Blake and our Allie and find contentment in them, but also a willingness to go beyond that and to parent another child if God chose to see his willing heart. My approach to God began with a need that I believed I had. It was a longing that could only be filled with this child that I knew would complete us. Looking back over this part of our lives I can now see that at the very moment when I approached the Father with my willing heart rather than my requesting heart is when He chose to bless me. It took my surrendering to the thought that I would be willing only if it were His will for our family, and only if it were done in His time. The days following my Ashley's birth were some of the most difficult days of my life, but they were also the days when I learned that my life could not be all about me. It had to be all about HIM. I had to pray that only if it were His will that she live, if it were His will that she be mine, if it were His will that I hold her. In those days I became broken. I poured my heart before Him. In those days He became real.

Today we woke up and we find ourselves facing a whole new set of issues. Ashley is dehydrated and her kidneys are not working. They have given her blood, they have given her fluid, they straight cathed her bladder and they plan on doing it again. I find myself praying AND asking for more. I continue to go to the Father and ask Him for more. I know that He does not grow weary of my request because of Who He is. As I struggle with the question of "How could I ask for more?" I find this answer, BECAUSE HE LOVES ME and BECAUSE HE LOVES HER.

I would appreciate your prayers for my Ashley today. Her body hurts because she is so very dry. She hurts to be touched. She hurts to be moved. She hurts. Thank you for caring enough about her to take her to the Father. Trish

Outside of being a mom my passion in this life is taking pictures of my amazing kids. Along with my addiction to photographs of them comes a healthy love for scrapbooking. Oh, brother some of you may be thinking. You may have never pegged me to be the "crafty" type, don't lose faith in me now because I am not crafty. I don't scrapbook in the typical stereo typed fashion. My goal is not to be the Martha Stewart of scrapbooking. I have other goals in mind as I put together these books. I just don't want to forget. I don't want to forget a thing. Not one detail of this life that He has given us. I scrapbook not to show an amazing display of my sticker sticking ability. I scrapbook the events of our lives so that someday my children might look back and see how truly blessed we are.

Inside the volumes of their lives I have poured out my heart. I have written to each of them and told them all things I would want them to know if the day ever came that I was no longer here to tell them. I am so aware that I only get one shot at this life. I am not promised tomorrow. I am not promised a lifetime with my Blake, my Allison, or my Ashley. I want them to know the important things. I want them to be able to look inside of these books and not only see the pictures on the pages but also read their mom's heart. This is why I scrapbook. Our books tell the good, the bad, and the ugly. I hold nothing back. They tell of the wonderful love of Jesus. They tell of the evilness that stole so many lives on 9-11. They tell story after story of the everyday events that have made our little family of 5 to be the people that we are today. When you open up one of my scrapbooks my prayer is that you will be able to see beyond the pages, see beyond the pretty paper (and yes some of the stickers I have put there), see beyond the pictures, and see into my heart. The heart of a mom and a wife who loves her life. Who loves her children. Who loves her husband. Who loves her God. When I look through the pages of my scrapbooks I see blessings. Blessings that I did nothing to deserve. Blessings that have been bestowed on me for no other reason except that He loves me. I rarely ever close my scrapbook albums without a smile on my heart and tears streaming down my face.

Now comes the jealousy part. As I read about the up coming Crop-A-Thon being held as a benefit for my Ashley how I wish I could attend. How blessed I would be to sit among a group of Moms who love their children just as deeply as I love mine. How amazing it would feel to see those who have taken the time to come and support my Ashley. Let me say Thank you in advance. Thank you to the volunteers who have chosen a fund raiser that is so "me". It comes so close to my heart. Thank you to those of you who plan on attending. It means so very much to me.

Tonight my Ashley is hurting. Her little body is so very sore that she cannot even stand for me to hold her. She took such a big "hit" with this last episode. I am afraid it will take her a little longer to get back this time. She is showing signs of dehydration and withdraw. Both of these things are making her feel so yucky. My heart hurts for my baby and I wish I could make all of her hurts go away. As I prepare to start my Ashley's scrapbook I struggle with just how ugly parts of her story are. I really have a hard time looking at some of the photographs and with telling of some of the bad days. I am so thankful that all of the ugliness she has endured has been followed by such beauty. I will be able to share with her just how very much she is loved. Loved not only by her family, but by all of you, and by the One who created her. I pray that I will do her story justice as I tell it. I pray that she will see past the hurts and find the blessings that have been bestowed. I pray that the day will come when she will be old enough to read the story herself. I pray that I never face the day when it is only I who holds the volumes of her life in my hands. Building her scrapbooks are difficult. It is painful, but at the same time it so very BEAUTIFUL. I pray I never forget one moment, one detail, one lesson that has been given through her life.

Thank you for your faithfullness. Thank you for your continued presence here. Thank you for your prayers and your cries to the Father on her behalf. You are loved and appreciated. Good night from our little corner of the PICU. May you rest well. Love, Trish

It is amazing to see how God has used Ashley's Story to give us the boldness to share His story with so many. We praise Him for that opportunity. We pray that you would come to know Him and what His son did for us on the cross as you come to check on our Ashley. Thank you so much to each and every one of you for your prayers for Ashley. Your concern for our Gherkin is one of our favorite parts of Ashley's Story.

The red areas represent where people have logged on to Ashley's Journal.





If you have checked on Ashley and you live in one of the 4 grey states please post a comment or send us an email and let us know. If you have friends or family in one of the grey states please share Ashley's Story with them.





UPDATED: Thanks to Jennisa in South Dakota for letting us know you are there. Now we are down to 3 states.

1-23-2006 UPDATE: I just saw Idaho, now only New Hampshire and Maine are left

Morning rounds are now over and there are a lot of changes in Ashley's care taking place today. The list of changes is very long and I am trying to keep them all straight in my mind. She will be receiving some fluid bolus' this morning because she is now too dry. They will be changing her blood pressure medicine to a patch that will also help sedate her so that she might get a little sleep today. If she does well, then we will feed her at a rate of 5ccs an hour just so we can use the new bowel a little. Her lipids will be cut and hopefully be turned off in the next day or two. They are planning on removing her art line and foley this morning, so by late afternoon I may be rocking that sweet baby girl. They tried to wean her oxygen, but she is not ready for that just yet. She is very, very weak from being down so long and so very sick. We will not start physical therapy for a few more days. I want her to try and get some rest and then we will work on re-building her strength. I plan on doing a little range of motion with her limbs as long as she is able to tolerate it. Other than her exhaustion, she looks very sweet this morning. Her voice has not quite returned so she sounds very scratchy when she tries to talk. I hope to give her a good bath and shampoo late this afternoon and place her in a pair of snuggly p.j.s. At this point the only thing she has been wearing for the last week is her precious bunny slippers.

On his way out of our room this morning one of the surgeons told me they would try not to break her this week. I told him how much I would appreciate that and assured him that I knew she was a little complex and she was just keeping them on their toes. He laughed and said, "Complex?, I am complex. Your daughter is an "enigma"." ( I have no idea what that means. I hope it is good.) I replied, "Yeah, but she sure is beautiful." To that he said, "We all know that, and it is not being debated." I really love this team of professionals who take care of my Ashley. They are amazing people and I know they want the best for her.

It is so very quiet here today and tears come to my eyes as I look around and see that we are on our own again. How I long for the day that I bring my sweet baby home. My dreams are now filled with quiet nights at home where I sit on the couch listening to my children play. I miss the routine of tucking them all in there beds at night and asking Dave to get up at least 3 times throughout the night to make sure the house is safe and the children are covered under their blankets. I think he misses it too, although I am sure a full nights sleep without having to trek through the house in the dark at my request is probably appreciated.

Today I am waiting to see what the Lord will do in my youngest daughter's life. I pray that He will reveal Himself to me in the little things as well as the big. Just to know that He has brought her so far over the past week touches my heart. I am asking Him to give her strength to carry on. I pray that His will is going to allow us to return home someday soon. The calendar continues to turn and Ash and I have lived the last four months here in this PICU without Dave, Blake, and Allison. My prayer is that perhaps in the next four months the Lord will all allow us to move home and pick up where we left off. For now I am working on being content and looking for ways that He might use me while I am here. I pray you are blessed today. Trish

Some have asked where you can find the Bunny Slippers. They are available at:

www.bunniesbythebay.com

I hope you all enjoy them as much as my Ashley has. They bring her much comfort on the hard days, and they make a great accessory for a princess on the easy days. Let me know if you get a pair. We would love to see pictures of your little one wearing them also. They also had the cutest puppy slippers for little boys. I hope you enjoy! Love, Trish

I had fully expected to be sobbing uncontrollably by now from saying good bye to my precious family. Instead of sobbing uncontrollably my heart is racing and I am breathing uncontrollably. What I thought was a well orchestrated, organized plan for getting everyone where they needed to be by 4:30 this morning proved not be fool proof. Let me start with the events of last night.

After tucking Ash to bed and saying goodnight to her, Nan, and Grandma, the kids were begging to back to "our" hill and sled just one more time before they had to leave the wonderful snow and go back to Texas. I begin telling Dave that there is absolutely no way I can survive another round of frostbite because the temperature had now dropped into the 20's. I must go back to the apartment and begin doing laundry and packing if we even hope to get out of there on time in the morning. He looks over at me and whispers, "I just want to say yes." "OK," I said, "but take me back to begin doing the responsible thing and you guys have a great time." We all agree. One little problem, have you ever met our 8 year old daughter? She is just as stubborn and determined to do things the hard way as our 1 year old. I don't want to get into all of the details but the tears began to flow over not being able to put her snow pants on over her boots and through much debate it was decided maybe she was too tired to go "sleighing" and perhaps she should just go snuggle on the couch with mom. So the boys are off. A short while later the boys are standing at the front door and they say, "It just isn't the same without you, Al. We came back to get you." My heart is instantly melted as Dave tells me how Blake got there and decided it wasn't fair to be having so much fun without Allie. As they pull into a parking spot outside the apartment Blake says to David, "Thanks dad, not everybody's dad would drive all the way back to get her." "Your welcome, Blake, not everybody's big brother would want me too." As Dave is sharing the story with me and Allie is "wrestling" her boots, I say, "hurry up and shut the door, I am freezing", to which my son replies, "Mom, we are trying to have a "moment" here!". Did I ever tell you all how very much I love those two guys?

Anyway they return way too late from"sleighing" and I finally get us all tucked into bed for a 3 hour nap. Meanwhile we live in a very small, one bedroom apartment and the washer and dryer is in the very middle of it. None of us are able to fall asleep quickly because of the NOISE coming from the laundry. Dave and I retreat to bed and the tears begin to fall. I start to fall apart because of things from A to Z that are going on in the lives of my little family of 5, and Dave tries to tell me everything will be OK and that someday Ash and I will BOTH move back home and all of this will become a distant memory. He tells me this not because I believe that he actually believes it, but because this is job to try and make me feel better and he is getting sleepy. The next thing I know I am "dreaming" that the phone is ringing and on the other end is the cab driver telling me our cab is downstairs. Thank you I reply and then close my phone and my eyes. They pop back open quickly to reveal that it is 4:26 and we need to be all the way across town outside of the hospital in 4 minutes. IMPOSSIBLE!!! is all I have to say about that. So here goes my crazy life. In 13 minutes flat I have managed to wake not 1, not 2, but 3 sleeping bears, gotten them dressed, luggage loaded and the car started by 4:37. During the drive I am still slaying problems like lost crocs, forgotten toothbrushes and the likes,but we are all buckled up and we are on our way(with the knowledge that we are paying the cab driver the entire time as his meter runs).

So the tearful goodbye I had fully expected did not occur. I managed to leave my cell phone, my shampoo, my shower gel, and several other necessary things at my apartment, but my family was safely loaded into a cab and on their way to the airport. I guess God had His own way of having us say goodbye this time, and I am going to be thankful that my eyes aren't swollen from crying but rather a lack of sleep.

I am now going to go lay in my chair next to my Ashley's crib and pray that she will somehow, someway fall asleep. Her little eyes have been opened for over 24 hours and she looks so exhausted. The good news is that her sats are at 100 on only 2 liters of oxygen, and it looks like we will be able to safely kick that ventilator out of our room. My next hope is to lose the catheter and art line so that I might actually hold this princess at some point today. I will update you all as the day progresses, but I think I might actually manage to sqeeze in an hour long nap before the PICU awakes for the day. Have a great day and may God bless you as it starts. Take care. Trish

It amazes how much joy can be found on a hill covered with snow. This evening Dave and I took the kids back to "our" hill(the one we found on new years eve), and when we got there we found another family using it too. Al was so sad to see that someone else had found "our"hill. Dave tried to explain to her that we did not own the hill and that the snow on it didn't just belong to us either.
Good luck convincing our 8 year old from Texas that it wasn't sent here just because she prayed for it! Thankfully we were able to share "our hill and our snow" and still manage to enjoy it.

The only word that comes to my mind when trying to describe how it felt to play with our kiddos today is JOY. I had a smile on my face the whole time as I listened to them laugh and giggle as we ALL tried to tackle that hill. They got great enjoyment out of watching their mom squeal the whole way down. I was freezing because I don't happen to own a pair of snow pants or boots like they do. Needless to say the frostbite I developed was worth it. Anything to see them smile right?

It was so funny listening to Blake try and explain the difference between sledding and sleighing to his sister. Finally he gave up and said,"You just don't get it." Her reply, "I don't care, I just like to go sleighing when it snows!" Someday we might actually take her on a "sleigh" ride and perhaps she'll understand, but for now I love listening to her get so excited about taking her sled sleighing. I sure do love this girl!

How sad it makes me to know that our visit is coming to an end. I love it when they come, but each time I watch them leave while Ash and I stay behind hurts just a little deeper. My heart is heavy and a little discouraged because I have no idea when or if we will ever be back together in our little house in Texas as a family of five. The eight months we were given from Jan. 20 until Sept 26 were the best of our lives. My Ashley was so very ill, but at least we were home doing it together. Now she is ill and we are apart. Tomorrow will be lonely and we will find ourselves wishing we too could have gone home. I know in my heart that the Father is working in Ash's life and that He has a plan, but it doesn't make it hurt any less. I pray that He will allow us to go home someday. Until then I will stay willing to let Him work in my heart and in my life.

Ash is still struggling tonight, but she is breathing without the help of the vent and we are thankful for that. This will be my last night to tuck Blake and Al into bed. My last night to plant those secret kisses on their foreheads while they sleep. My last night to drift off to sleep while holding tightly to Dave's hand. My last night to hug them all till it hurts. The grandmas will stand watch over Ash's bed and then they will all leave for the airport around 4:30 in the morning. I will take my place next to Ashley's crib in my favorite recliner and dream about the days when we will all be together again. Thank you all so much for caring. Thank you all so much for coming. Thank you all so much for praying. Good night from Omaha and may you rest well in the knowledge that the Father himself is watching over you and yours. I love you guys. Trish

Ash has finally stabilized since coming off of the ventilator this morning. We are so thankful that she is no longer on it. For a while I feared she would be placed right back on. It took her over an hour to settle down enough and to get her sats at an acceptable level. Dave left with the kids so that they did not have to watch her struggle. She is requiring some oxygen support in order to maintain her sats. She is trying to rest while lying on her tummy, but I know that she must be uncomfortable with her new incision and chest drain. She seems to sat better on her tummy then her back so for today she is learning to cope with this new position even though it is uncomfortable. Ash is not the only one learning to cope with the situation she is in today. She is withdrawing heavily from the narcotics that have helped to sedate her over the last week. Her daddy is struggling as he watches her shake and tremble. It is not an easy thing to observe. I have seen it time and time again and although it breaks my heart, I have gotten used to it. If you haven't witnessed her go through it then it can be very difficult. I wish we could skip this part of Ashley's recovery. She is so miserable and it lasts for days and days. Not only do her little arms and legs tremble but her face shakes so hard that her little cheeks do also. I know she doesn't understand why this happening to her.

As we approach the beginning of another week here in the PICU my prayer for my Ashley is that she might make progress. Tomorrow they will begin introducing some more fluids into her system. She is now so dry that her little eyes are sunken and bruised. The fluid balance in a transplant patient is so difficult to figure out. It seems to be the enemy. What a fine line it is between overloading them and dehydrating them. This is one of Ashley's main issues. Trying to figure out what is a safe amount of fluid to allow her body to carry has not been easy. I also pray that we might begin to tackle her feeding issues again and that this time we might find a solution to the difficulties. I am confident that God has a plan in mind and I am waiting to see how He will reveal it. For today I am thankful to have David by my side as we watch Ash learn to cope with her new set of circumstances. Tomorrow I will learn to do it alone once again and I will begin counting the days until the family will return.

We are off to go sledding and to enjoy the time that we have left. Grandma will be sitting with Ash as she sleeps and spending some precious time with her. I am glad that Nan and Grandma were able to come and visit with Ash. I think it is helpful for them to get to pop in every now and then. I know how hard it must be as they watch her struggle from a distance. I hope and pray that her grandparents from Oklahoma will be able to make a visit soon. I think it helps to be able to actually see her. Thank you all for your prayers today. They mean so very much to us. May God bless you today. Trish

Hip Hip Hooray! Ash is off the vent. They took out the tube about 10:30 and so far so good. She is not to happy right now, having a bit of trouble breathing so I am going to take Blake and Allie out sledding while Ash gets some rest. Hopefully by the time we get back she will be more stable and feeling up to seeing Blake, Allie and her dad. God really blessed us last night with 6 inches of fresh snow. So we are off to the park to play in our blessing.

DAVE

"It's amazing how much you have learned about all of this stuff." This is what Glenda just said to me. My response, "I wish I didn't know any of it. I wish all I understood was eating play-doh and building mega blocks!" I guess God had something different in mind for me this round.

I know more about ventilators, labs, meds, machines, lines, tests, procedures, hospitals, nursing, and anything else found inside the walls of this hospital. All in all if the truth be told I really don't mind learning it. If this is what it takes to be Ashley's mommy then I would gladly learn it and more. Whatever is asked of me to do this job I will do it with a smile because shes worth it!

Some days our conversations with Blake and Al stay on the lighter side. We talk about the silly things Ash is up to and we leave it at that. Then there are conversations like the one we had this morning as we drove to the hospital. "Will Ashley ever walk?", "When will Ashley get better?", "Is Ash going to be OK?" The toughest thing about these conversations is that I want to tell them what they want to hear. I want to tell them that some day Ash will be healthy. I want to tell them that her story has a happy ending, but I CAN'T. The questions that they have are the same ones that race through my mind constantly. So instead of actually answering what their tiny hearts are wondering, I tell them this; "I don't know if Ash will ever walk, or run, or play baseball like Blake, or get to cheer with Al. I don't know when we will make it back home, but I do know that we are the lucky ones. We are the ones that God chose. He knew that Ashley didn't have to be perfect, and that she didn't have to have a healthy body for us to love her. He knew that we would love our Ashley no matter what. She might not have been created beautiful by anyone else's standards, but to us she is absolutely perfect!" I turn around to see tears in Blake's eyes and I know that he understands exactly what I mean. To us she is just right.

Today Ash has been sleeping. She only played for very brief moments, but we wanted to give you a glimpse of our little one. Yesterday Allie made her this mobile, and when Ash opened her eyes to see it hanging above her this is what she did. I hope you all enjoy watching it as much as we enjoyed filming it. We love you guys, and we are forever grateful that you chose to become a part of Ashley's story. We are off to play in the snow. Goodnight. Trish

This morning our Ashley Kate is starting to look better. They have been able to pull a tremendous amount of fluid off of her and she is beginning to "dry out". She will remain on the ventilator because it takes a while to wean the settings low enough to take her off. Her chest x-ray is basically the same with just a slight improvement. We hope to have her ready to breathe on her own by morning. Of course they follow this statement with, "Things could change, you never know what may happen". If I have learned anything it is that. So many things have changed and things that I would have never imagined have happened to my Ashley. I have learned not to really count on anything and to just take it moment by moment. Her chest tube is still draining, and I have no idea how long it will have to stay in place. Her little cheeks and chin have started to show some bruising for the CPR and intubation on Monday night. It just seems like such an ugly reminder to me of the events that occurred. I will glady watch them fade, watch the chest tube come out, and the ventilator disappear so that I might try and put the memories of that night behind us. I pray we never have to live with that fear again.

Ash is more awake today and she is happily playing between her naps. She would still like for the breathing tube to be removed and she doesn't mind letting us know it by shaking her head each time they come to suction it, or give breathing treatments, or re adjust it. I love this little attitude that she displays. Her daddy asked the nurse why everyone says she has such an attitude and he was told that she has been here long enough that she has become famous for it. Honestly I can't blame her. If I had to put up with all that she does I would exhibit a little attitude too.

Today I thanked the Father for another day. Another day to spend with our Ashley Kate. Another day for all of us to spend togther as a family. Another day to make memories. Another day to see what He will do in our lives. I prayed that He would use me, and allow me to make a difference in the life of someone. I don't now what today holds for us, but I am ready to embrace it and to live it to the fullest. They promised 100percent chance of snow tonight. We are happily anticipating 5-6 inches. Tomorrow we will take to the "slopes" with our sleds and live it up! We love Omaha when it snows! As you can imagine all 3 of my "big" kids are happy. Thanks for checking on our gherkin and thanks for praying for her today. We will be posting a video to share with you this afternoon. Have a blessed day. Trish

These are the beautiful bunny slippers you have heard so much about. They have been through it all with Ash. They are the bunnies that had to get a hair cut (click here for details) due to Ashley's antics. They are the ones that keep her warm when the night are cold. They are there when she falls asleep at night, and they are there when she wakes up. The have been through MRIs, Cat Scans, X-rays, echocardiograms, upper GIs, broncoscopies, central line changes and all the other tests and procedures our Ash puts up with. Many times these bunnies are the only bit of clothing Ash gets to wear. I am quite sure they make her feel like a girl while she endures all she must go through.

I am really enjoying getting to see Ash. She is in there behind the vent and sometimes I get to see the sparkle in her eyes that I miss so much while I am away. She is pretty heavily sedated on the vent so I have not gotten to spend much time with her, but I know that she knows that we came to see her. I am really hopeful that she will come off the vent before we leave so I can hear the growling I have come to love.

Earlier this week I had just sat down to eat dinner at a restaurant when I heard a man walking around the restaurant asking for David Adams. He was working the room looking for me. I told him who I was and he told me I had a phone call. I knew this was not a good thing. I picked up the phone and it was a friend of ours telling me that Trish was trying to reach me. I immediately called Trish and she did not answer. It was one of the moms of another transplant baby. One of Ashley's little friends. She informed me that that Ash had gone into cardiac arrest. For a moment I thought this was the phone call I had been dreading. Then she continued to tell me that she is OK. She passed the phone to Trish and I heard my wife crying I knew that things were not OK right now. Trish tried to explain to me what was going on but honestly I could not understand her through the tears. Next thing I know I was talking with an assistant who was able to fill me in on the situation. I won't repeat the rest as you heard it in the earlier posts, but I just wanted to let you know how great it is to see her today. Not just her body, but to see her little personality. There was a couple of days when we didn't know what damage had been done and to see her play and smile and try to rip off my face today was such a blessing. I thank God that she is still here with us and I thank Him for making her such a fighter. I can't wait to see what He is going to do in her life in the coming days, weeks, months and years.

Thank you to each one of you. You are so important to us and such an important part of Ashley's Story.

DAVE

I only wish I was talking about the weather, but unfortunately I am refferring to my Ashley's lungs. This morning things on x-ray just don't look very good for Ash. Her weight is up a kilo and 1/2 because of extra fluid. After Monday's event they were forced to "slam" Ash with lots and lots of fluids and blood. They have not been able to pull the fluid off of her and so this is making it too difficult for her to breathe. The drain in her chest is still putting out fluid from the pericardial sack so they will leave it in until the fluid stops. I am concerned about her being down so long on the ventilator. I am praying she doesn't develop any pnuemonias or infections while she lays there. How I had hoped for her to come off during the kids visit, but this morning it does not seem likely.


She was thrilled to open her eyes and see her daddy, Blake and Allie. They made it in at some point last night. I had fallen asleep and I woke up when my Allison placed a little kiss on my forehead. I really love those forehead kisses. It is supposed to be a secret while we sleep, but sometimes they do wake us up. Ash began to kick her bunny feet (I promise to post a picture of those things today!) and wave her arms. She reached out for her daddy to hold her, but she was content enough to hold his face in her hands. She is alert and playing while on the vent, and she actually looks better to me today even though they tell me she is worse. Her little eyes can open more now and the shape of her tiny nose is coming back. Her cheeks are rosy and her smile (even with the tube down her throat) will melt your heart. They removed the bandage from her chest incision this morning and now it is being held together with butterfly strips. I can only imagine how much this is contributing to her discomfort. When I spoke with the surgeon he shared with me that although he did not have to open the breastbone(which I am so thankful for) he did have to cut through the cartilage at the base of it in order to work on her heart underneath it. I haven't actually looked at the new incision yet. I think I will save that for another day when I am not already feeling nauseated.

Our hope and prayer today is that our Ashley will be able to dry out soon so that she might begin to breathe comfortably enough to have the ventilator support removed. Sometimes it is difficult to watch her struggle so much when I look around and see so many of our transplant friends doing so well. I just try and remind myself to be grateful that we are still here because we also have many friends who did not make it. That reminder helps me to quickly dry my tears and begin to concentrate on our blessings instead.

We appreciate your prayers for our daughter. We appreciate you visiting her story day after day. I am looking forward to the days when all I have to share with you is good news, good news, good news! I know that day will come. We just have to get through some rough ones first. We are still growing, still learning, still loving this life, still pinching ourselves to see if we really are this blessed or if it is just a dream. We know He is working out His plan for our family and we are thankful you have decided to follow along. We love you guys. Have a blessed day. Trish

It seems as though I have been waiting for a lot of things lately. Tonight I find myself waiting on my family to arrive. As an adult I find it difficult to wait at times, so I can understand why my Allie has called 3 times in tears. She continues to call to let me know that their flight has been delayed. Again, and again, and yet again. She just wants to be here and she doesn't want to wait any longer. She had to talk to me because she was so sad about the delays but she told me she is not supposed to tell me that Blake is coming. He is going to surprise me. So I must act surprised to see him. I assured her that it would be ok and that I would be awake and waiting for her arrival. I told her of all the things we would do this weekend and then I told her we would begin planning for her birthday party and order the invitations tomorrow. Through her tears I could hear her smiling about that. It is never easy to wait. Especially when you have had your heart set on something.

Through my Ashley's Story I am learning to wait. A lot! One of the things I am finding out about waiting is that God's Best is always worth waiting for. We waited for 13 years for our Ashley and I am so very thankful that we were willing to wait on His best. I could not imagine our lives without her in it. We learned so much about waiting after being listed with the transplant registry. Each night we grew closer to God as we waited for the call to come. I never really thought that it would. I watched my Ashley begin to slip farther and farther away and I began to struggle with the wait. Every time the phone would ring my heart would beat out of my chest and I would hold my breath while waiting to see if it was the transplant center on the other line. When the call finally did come I could see that God had provided for our Ashley and our wait for organs was finally over. Now that she has been transplanted we wait for her to heal. I will be the first to admit that this is not an easy thing to do. I am constantly reminding myself that it will be worth the wait when He finally brings us to the point of leaving. Some days are harder than others, but I know that He is faithful and that when our wait is finally over we will be able to look back and see the hand of God all over our lives.

So tonight I continue my waiting. I am waiting on Dave and the kids to arrive safely here in Omaha.I am waiting to hug them until it hurts. I am waiting to hold his hand again. I am waiting to tuck them into bed tonight. I am waiting to place kisses on their foreheads. I am waiting for my Ashley to breathe on her own. I am waiting for her body to accept her feeds. I am waiting to take her out of the hospital and to our apartment. I am waiting for the day that we move home again. I am waiting to see her grow up. I am waiting to see who she will become. I am waiting to see her tell her story. I am waiting to see how much God will use her life for His glory. I don't know when the waiting will end for me, but I know that I want nothing less than His best and I am willing to wait on it. Good night from our room here in the PICU. Take care and God Bless. Trish

Usually I would not consider spending the day sleeping, but today I will have to admit it has been so helpful. If I am asleep I do not feel the soreness in my mouth or the nausea caused by the medicine. It has been very nice to escape from it for most of the afternoon.

My sweet Ashley Kate has also spent the day resting. I cannot even list off to you the combinations of medicines it is taking to keep her sedated. She is so tough. As they wear off you can see her little bunny feet kicking and she begins to shake her head "no, no". She is so very swollen and I pray that Blake and Allie aren't frightened by her appearance. If you look closely you can still see "her" through the puffiness of her face. As she wakes I wet wash cloths for her so she can have a little drink. You should see her grab them from me. She loves them! It makes me sad to think that she is so thirsty. I hope she will start to get rid of some of the fluid over night. I would love for her to be able to come off of the vent while the kids are here, but only if it is safe for her. It may take her a little longer than they originally thought to recover from this weeks events, and that is ok. In her own time is fine with me.

I am so glad the weather cleared enough for the Dave and the kids to come visit. They have made it to Dallas and are now waiting for the 3 hour lay over to end. They were dining at Chilis when I spoke to them. Honestly I think that is just a little unfair since it happens to be one of my favorite places to eat. There is no way I would be able to chew anything from there tonight. I sure hope they are thinking of me while they dine. The kids still are planning on surprising me and I didn't want to disappoint them so I am playing along. They love surprises. I can't wait for them to get here. The snow is still on the ground and there is still enough for them to go sledding on. I know they will be thrilled.

I just wanted say Thank you to Jill for bringing up the cookies for the kids. It was so thoughtful of you and I really appreciate it. I am so sorry I didn't feel well enough to really visit. I hope we get another opportunity.

Thanks so much for checking in on Ash tonight. I am going to go lay down and try to ignore the throbbing inside of my mouth for a little while longer. We love and appreciate all you do for us. May God Bless you. Trish

In some odd way I think I am thankful that they chose to leave my Ashley on the ventilator today. I had determined I was not going to take any pain medicine today because it was supposed to be her first day back . I wanted to be awake so that she would see me and know that I was there. Today I am very sick. Something inside of me is so queesy and I am dizzy. I think it is just pain. The wisdom tooth that needed to be removed yesterday was going to require surgery. They wanted to put me under and remove all 4 of them. Obviously that was out of the question. I have a baby in the ICU and there is no way I can afford to be down for a day or two. So instead of taking the tooth that has me in such pain, we opted to remove the one above it in hopes that it would relieve some of my discomfort. The theory being that it was biting down on the damaged tissue being caused from the wisdom tooth that needs to be surgically removed. Guess What? Now I have 2 places in my mouth that are causing me great pain. I think we made a mistake.

Since they have my Ashley sedated I broke down and took the pain medicine. It is making me so sick. So now I am looking for...soup? ice cream? anything? I need something to just slide down my throat so my stomach isn't empty making me want to hurl. I think it is a bad idea to let lortab and motrin be the first drugs in your system after 15 years. It has been about that long since David and I have taken anything. We don't even have a tylenol or advil at our house. I must have temporarily lost my mind when I agreed to let the dentist remove my tooth.

I pray that Dave and the kids can make it in tonight. If the weather permits they are going to try. I could really use some help. I know I sound like such a wimp compared to my Ashley. She has her body cut into and opened up and organs removed and organs added and never complains. Her mommy on the other hand is just a big baby! I am sure tomorrow will be a better day. Thanks for listening. Trish

Even on the dark days, I still see beauty. Even on the sad days, I still see beauty. Through the disappointments, I still see beauty. On the days when my heart grieves the loss of another child, I still see beauty. This morning as I think back over the last few days in Ashley's story, I see many places of beauty.

In the halls of this PICU I see beauty. I see beauty in the smiles on the faces of those precious women who make sure all things stay clean. They have such a way of making me see the beauty of all who surround me. I see beauty through the dedication I watch day after day in the nurses who come back to make a difference in the lives of these children. I see beauty in the friendships that have developed between us. I see beauty in the way thay they don't just do their job when taking care of my Ashley but in the way that they love her. I see beauty in the faces of my fellow parents who show genuine care and concern for my daughter. I see beauty in the knowledge and the skill of the surgeons and the doctors who have been used to save my Ashley's life time and time again. I see beauty in the way they take the time to make sure I have an understanding of what is taking place. I see beauty in the transplant coordinators who show how much they care for me and Ashley each time they pass me in the halls. I see beauty in the faces of the children who have become patients in this place. The beauty they exhibit through their will to survive is astounding. I see beauty in the kindness of strangers. I see beauty laying in that crib across the room. Some of the most amazing beauty I have ever seen. I see beauty in her eyes as they light up when she sees her mommy or her Daddy. I see beauty in her smile. It melts my heart. I see beauty in her finger tips as they squeeze as tightly as they can to mine while she sleeps. I see beauty in her tiny feet, and in the dreams I have of where those tiny feet will someday take her. I see beauty in her strength, in her will, in her face, in her spirit, in her heart, in her whole being. I see beauty in the way she was created. I see beauty in His plan for her life. I see beauty in the possibilities. I see beauty in the promise. I see beauty in the body of believers who have surrounded us with their love, their prayers, their protection. I see beauty in this life that I have been blessed with. I see beauty because of her struggles. I see beauty because of who He made her to be. I see beauty all around me because I have been allowed to love my Ashley.

This morning they will not take Ashley off of the ventilator. They attempted and she failed. Her lungs are still too wet and it is too dangerous. My heart is disappointed, but I see beauty in the wisdom that is being used to spare her any further complications. She will spend another day fighting agaist the breathing tube, but I see beauty in her fight because He has allowed her to be here to fight another day. I am surrounded by beauty, and I find beauty in the lessons I have learned that have brought me to a place where I can find it.

My prayer for each of you who come to Ashley's story today is that you too will look around you and see the beauty that He has placed in your life. It is there, and it is capable of being found. You have been the cause of much beauty in my life, and I appreciate each one of you for bringing it to me. You are loved today by not only a baby pickle but also by her entire family. May God bless you. Trish

P.S.

I have not been able to find the beauty in having a tooth pulled. If you know where I might find it, please let me know. I seem to be struggling with that one.

I am so thankful for the good news concerning Ashley today. They plan on taking her off the vent in the morning so I will be praying tonight that all goes as planned. I am so thankful for the progress she has made after all she has been through in the last couple of days. God truly has blessed us once again. He created an amazing little girl with an amazing strenght. I want to thank each of you who have taken the time to pray for her when I ran out of words to pray. One of the lessons I have learned from Ashley's Story is how to count on and rely on all of you for your prayers. I thank you and praise God for teaching me this lesson. We are all looking forward to heading to Omaha tomorrow. I do hope Trish and Ash will be feeling well enough for our visit. Thank you for caring for our Ash.

Goodnight,

DAVE

I just called to check on Trish and the conversation went something like this:

"Hey baby, how are you feeling?"

"Esssts sssarting hooo surrrrt. I ssssstinkkkkkk I'mmm gooonnnnnnaaaa puke!"

"Well that doesn't sound to good. The kids are here do you want to say Hi?"

"Nnnnooo, jusssssst tell demmm I loooove demmmmm."

"OK, I hope you start feeling better, I will call later to check on you."

"OoohhhK"

"Bye"

That poor girl. I booked a flight for tomorrow ( I hope it doesn't get rained out) I hope to be able to get there and help her out some.

Today started out a mess as it was determined that a huge ice storm was coming. It was going to be an absolute disaster. There was going to be pandemonium in the streets. The schools shut down, the roads were to be death traps and everything was doom and gloom. I called to cancel my flight out of Dallas and then began to wonder if I would be seeing any patients this afternoon or if they would all be stuck in ditches or frozen into their homes. I think we have been bamboozled by the weathermen. I left my office for lunch only to discover RAIN. I went home and found my kids had no school. It was a rain day. Now when I was in school we prayed for snow days. We walked 22 miles in 3 feet of snow with bacon in our socks, uphill both ways and nowadays they get out for RAIN!! Come on!?! The airport closes on account of RAIN!! Get Real?!? What is wrong with these people? Have they gone insane?? People were stocking up on food and fuel just in case they got caught in the RAIN!! Come on people, we are in TEXAS!! You weathermen act like it has never been cold and rained at the same time. (Shaking my head in disgust)

On another note I have spoken with Trish a couple of times today and things have not been going well for her. The Gherkin is doing well with no major changes but Trish has not been so fortunate. She has been battling a wisdom tooth for some time now. I have been trying to get her to do something about it for a while but she has not wanted to take the necessary time away from Ash. Well today was the day that the straw broke the camels back, or the pain broke the mommies tooth as it were. One of the nurses put her in touch with an oral surgeon there at the hospital. He recommended removing several wisdom teeth but she was not able to do that because there is no one there to take care of her or Ash while she is all loopy. She did allow him to remove one tooth on top and hopefully that will offer her at least some relief. I will be praying that she feels better tonight.

I need to get these kids some food before they starve to death. Trish seems to think I should feed them EVERY DAY. So I will check back in later.

DAVE

Morning rounds have ended and the cardiologist came by to tell us that this mornings echo showed no more accumulation of fluid around her heart. They are leaving the drain in the pericardial(?) sack in case some develops over the next couple of days but from a "heart" standpoint they said she is looking good. What joy that brings to MY heart!

The pulmonoligist would like to have Ashley off of the ventilator in the morning. More good news! He believes this was an acute event and that as we continue to "dry" her out that her respiratory status will continue to improve. It seems that all of the trouble we have had the last couple of days was due to the increase in fluids. The cardiac arrest was a direct result of the emergent bedside procedure that was done to try and remove the fluid from her heart. I pray we never face that situation again.

Once we can get Ash over these hurdles, then we will go back to battling the feeding issues and the debate over the next operation. I have learned that today's troubles are enough for today and I will face tomorrow's when I get there.

Ashley opened her eyes and tried to smile at me. She then took her little hands and placed them on my cheeks. I could see her spirit in her eyes. The attitude is still in there and my heart lept with joy when she reached out and touched my face. I love her so much and I can see how much she loves me when she looks at me. She is holding on to the breathing tube with both hands and threatening to take it out on her own. She wants to get back to playing and stop all of this nonsense. God has been so very good to us. Shes coming back a little more with each passing hour. I just wanted to share my good news with you all. Take care. Trish

I'm really trying not to cry, but it just isn't working. Dave just called to tell me that there is just no way it is going to work out. The weather is not going to allow him and the kids and the grandmas to make the trip. I'm feeling really, really sad and very disappointed.

They were not planning on leaving until tonight after Dave finishes at the office and Allie finishes with cheer practice. The plan was to drive to Dallas and fly from there into Omaha, but the travel to Dallas would be too dangerous with the icy roads there. The next plan was to fly out of Longview into Dallas then to Omaha, but there are no flights until tomorrow at 4:45. On that flight there are not enough seats available because of the flights that were cancelled today. My heart is very sad. I really just wanted to hug the man that I get to call my best friend and watch him love on our baby whom we almost lost. The kids were flying in to "surprise" me and Ash and I was so looking forward to hearing them talk. I just needed to be with them. All of us. Together.

I will stop my crying(at some point) and be thankful for the wisdom in this decision. I would have been a nervous wreck knowing they were traveling in these conditions. I would rather them all be safe and sound at home then to have regrets that could never be taken back. Ash and I are ok. We are learning to be tougher than I ever thought we could. I will save my hugs for another day and another visit and we will rely on God to get us through this one on our own.

Its going to be a longer weekend knowing that they should have been here with us.

My sweet Ashley Kate is awake and fighting every step of the way. She has not slept for more than an hour at a time since the anesthesia wore off yesterday afternoon. Her eyes are now open and she continues to shake her head "no, no" when they touch her. They are struggling to find some type of drug combination that would make her rest. She kicks her little bunnies at them, she waves her arms. She is moving her entire body. I am so sad to know that she is uncomfortable and in pain, but my heart is singing because I can see that she is there. She is a fighter. She is going to come back from this. I think if we could make progress on the vent settings and get them down to allow her to do more breathing on her own then she would be much more comfortable.

There are many, many unknowns as a result of the cardiac arrest. No one knows how long her heart stopped or if there was a loss of oxygen to her brain. Her stoma(the part of the intestine that comes out of her abdomen and into her ostomy bag) had turned a very pale pink after the episode. We do not know if she suffered a lack of oxygen to the new organs. Only time will tell us if there was damage done. All of these things are out of my control so I am trying not to concentrate on any of them. My heart tells me that she will be fine. She responds to my voice. She opens her eyes when I talk to her. She shakes her head no in response to my questions. The coming days and weeks will hold the answers to the unknown, but for today I am thankful that she has it in her to be strong, and stubborn.

My prayer for her today is that she might find some peace and rest from her discomfort. I pray that she will dream of happy wonderful things. I pray that she will soon breathe on her own. I pray that she will hear me say, "I love you". I pray that my sweet Ashley Kate will come back from this event and be stronger because of it.

Thank you for your prayers for her today. I don't know what tests or procedures she must endure today, but your prayers would be so appreciated for this tiny baby gherkin who is a survivor. Someday she will learn of all the wonderful people who carried her burden for her so that she might rest. You all are more valuable to us than you will ever know and our hearts are humbled by any moment you spend in prayer for our family. Thank you. Love, Trish

Tonight as I sit and watch my Ashley try to sleep through her discomfort a thousand things run through my head. I don't know the answers to the many questions that I have, but I have decided that it is "enough" for me to know that the Father does.

I cannot bring healing to my daughter, but it is enough to know that He can.

I do not know when she will breathe again on her own, but it is enough for now to see the ventilator breathe for her.

I have no idea when she will wake up to play again, but it is enough to have her here with me.

I don't know if she will ever walk or run, but it is enough to see her smile.

I don't know if she will ever talk, but it is enough to hear her sweet voice say, "Mama".

I don't know what tomorrow holds for her, but it is enough to have her here tonight.

I have no idea when I will be able to hold her again, but it is enough to have her precious fingers to hang on to.

I don't know how long it will be until I can rock her , but it is enough to be able to sing her to sleep.

I don't know what the future holds for my Ashley, but it is enough for me to take it one day at a time.

I have no idea if we will ever make it back home, but it is enough to have that hope to hang on to.

To see her next to me, to smell her hair, to touch her face, to hold her hand, to kiss her little toes, to tell her how much I love her it is "enough". To know that He gave me another day with her, it is enough. To have the opportunity to pray for her another night, it is enough. To still be her mommy, it is enough. I came so close to losing my youngest daughter and the thought of living without her was destroying me. I had to find a way to make it all ok in my mind. Knowing that there is another who loves her even more than I do is enough for me to make it through another day.

Good night from the PICU. As I read through your encouraging words my heart is blessed by you. Thank you from inside the deepest parts of me for loving her. When I run out of words to pray it is enough to know that you are there doing it for me.

If only I could write every page of Ashley's story for you all to read then you would truly see that her life is nothing but miraculous. Yesterdays and today's events have only added to my reverence for an almighty God who loves the tiniest of His Creation. Every day of Ashley's life He has been there protecting her and taking care of her. Once again He has shown me that even though I don't know what tomorrow holds He does and He is there taking care of things.

Please bare with me as I go back over the last few weeks of Ashley's care. A CT scan was done looking for evidence of a possible mold infection that had grown out on a culture that was sent 7 days prior. During the CT scan 2 nodules were noted and reported as mold. Last week it was discussed whether or not she should go to CT to follow up on the mold. It was decided to wait for another week and give the anti-biotic a full 2 weeks to work. Yesterday we went to CT and while looking for the mold (that was probably never there in the first place) they found an accumulation of fluid around Ashley's heart. This fluid would not have been there the week before and therefore we would have had no need to go to CT this week. An echo was then done and it was decided that because of her respiratory status quickly dwindling the fluid must be removed from around her heart immediately. During the attempt to drain the fluid Ashley went into Cardiac Arrest and began to code. CPR was started and she was re-intubated with the ventilator. She remained stable through most of the night, but early this morning we noticed a change in her blood pressures. They were rapidly dropping. A second echo was done and a blood clot was then detected. The top pediatric heart surgeon in the area was called in and he took my Ashley down to the operating room and removed the very things that were trying to take her life. God has done big, big things over the last couple of weeks and even though I may never understand the whys of all of this I know He is in control.

Today He spared my sweet Ashley and she is now resting stable on the vent. She is still very, very ill. While recovering from this heart operation she is struggling with her lungs. They have taken a huge hit and she has a battle to fight. Although she looks bad, she still looks so much better than she did last night or this morning.

Some people may not understand why we pray or why we believe in a God who you cannot see, but when you meet my Ashley you will leave with the knowledge that He is real and He is alive and He loves us. My faith has nothing to do with my religion. My faith is not based on my good works. My faith does not come from attending the church. The one thing I pray that people can take away from my Ashley's story and her struggles is this; Faith is based on the relationship. It is my relationship with Christ that allows me to believe that the God of the universe loves me. I will never be a perfect person. I will continue to make mistakes throughout my life, but I have a God who forgives me, who loves me, and who takes care of my baby.

My Ashley Kate is here and so many are not. Another child has died this hour in the PICU and I know that I could be standing in the same place as her parents are. I am thankful for each breath. I am thankful for each smile. I am thankful for each and every ounce of "trouble" that my baby can muster. I am thankful for another day to be her mommy. I am thankful for her life because I know that is a gift. I am thankful to be under His care.

Your prayers are so precious and they are carrying me through. I love you for loving my baby. How could I ever say thank you enough for the difference you are making in my life and in Ash's. I pray that each and every one of you will find yourselves "Under His Care" today and always. Love, Trish

Ash is back in her room. They were able to do what needed to be done without opening the sternum and rib cage. They made a 2 inch incision in her chest and then gained access to the pericardial sac. After opening the sac they removed fluid and what was described as a 2-4 teaspoon size blood clot. That is huge on such a little pickle. I am so thankful they were able to get that additional pressure away from the heart. They placed a drain tube into the sac and plan to leave it there until they get less than 10cc per day of fluid from it. Trish sounds pretty good. At the time I last spoke with her she still had not seen Ash. Ash back in her room but they were getting her settled in. The doctor told Trish to expect Ashley to be huge with lots of swelling. We will update as more info becomes available.

Thank you to each who have been praying for our Gherkin this morning.

DAVE

I just said good bye to my sweet Ashley Kate. As I kissed her tiny fingers I prayed that it would not be the last time I would ever hold her hand. This mornings events have been unbelievable. I have no words to describe all that has happened. All I know is that they took my sweet baby again and this time they can not tell me if they will bring her back to me. My heart hurts so deeply and I am empty. If only I had known it was going to come to this I would have never laid her down for her nap yesterday. I would have rocked her forever and forever. I pray I will rock her again. Please don't let it be the last time.

I fell across her bed this morning and cried like never before. I kissed her toes a thousand times and held her hand. I urged her to fight harder and harder. I begged her to bring her blood pressure back up. I know she was trying. Trying so very hard. Each time she would hear my voice it would raise. I sang to her. I prayed for her. I cheered for her to keep going. To do her very best.

They just called and said they have begun. God please guide their hands. Make them be gentle. She is so very tiny. I am broken and empty. All I do is cry and the tears won't stop.

My mind goes back to the day we dedicated her to God. We willingly gave her back to Him. Today I just pray He isn't ready to receive her. I still need her to be with me.

Ash will be going back into surgery today to attempt to remove the fluid from around the heart. They will be doing it this morning under video fluoroscopy (video x-ray) so hopefully there will be more precision and less chance of cardiac arrest. I don't know this, I haven't seen the research, but I pray this is true. That is about all I know. I pray that things will be uneventful and that Ash will be dreaming of bunnies and tic tacs. I am praying that Trish will have a boring day as well.

Thank you to each one who checks on our Gherkin and thank you for the comments as they let us know that so many are praying for our family.

DAVE

The night is finally over and know we must begin to pick up the pieces of what happened to my Ashley. We have just made it through a tough moment where she de sat into the 70's then 80's for over ten minutes after being suctioned. They were bagging her the whole time and struggled to bring her sats up into the 90's. My stomach in in knots and I am really feeling ill this morning. I hope it all passes so I can do what needs to be done today.

The biggest problem that occurred throughout the night was trying to get Ash sedated properly. She continually tried to breathe above the vent settings and this was causing problems. They eventually gave her vecronium which is the paralytic about every couple of hours. It took a little while to get her hands andd feet warmed back up after the arrest, but eventually she began to have better and better capillary refill. I don't believe any permanent damage was done to them. Her blood pressures and heart rate(although this is a little high) stayed stable all night long so we did not have to take her in to have the fluid removed off of her heart in an emergency situation. I am so thankful for that. This morning we have an early eco scheduled to look at the heart once again. Based on the results we will make a plan as to how we should proceed.

Obviously I am nervous and scared and I honestly don't know what else I am feeling. A little shocked and numbed wondering if it all was a bad dream. Unfortunately it was not because my sweet Ashley looks like she went through it. She is on the vent and she is gone from me for a while. I look forward to the day when they take her off and wake her up so I can rest assured knowing that she is there. Right now it is difficult to wait. I pray that she never goes through something so traumatic again. From here I really want to see her get better and better until the day comes that we can leave this place for good.

Please use caution if you come across our Blake and Allison. They are unaware of last nights events. There was no reason to burden them any further. It felt so very good to hear the innocence in their voices over the phone. How I long for the day when my Ashley has nothing more to worry about then a spelling test. Thank you for praying for us today. I am afraid it is going to be a long one. May God Bless you this morning. Trish

I love her. Thats it. Nothing more, nothing less. When I say that I love my Ashley I mean that I love her with every part of my being. She did not come from me, but she is a part of me. I need her. She is a part of us. We would not be "us" without her. Thank you God for letting me keep her. I was so very scared and I know I failed again, but you were merciful and you allowed her to stay with me. I owe you so very much. Thank you that today was not the day I had to give her back. Thank you for hearing my desperate crys. Thank you for letting me love her.

I don't think I can come up with the words to express the fear that overwhelmed me. It was so very close to my worst nightmare. Only God allowed me to keep her instead of receiving her. My heart broke. Physical pain ran through it. The tears have not stopped. My eyes burn from them. I am broken. My spirit is in pieces, but yet I still give Him praise because He did not take her home. My crys, my pleas, my prayers were so ugly. "NO,NO,NO,NO,NO". Not now, not today, not now, not today. God please, God please, God please." I must have cried them out loud a thousand times. I could not breathe. There came a point where I could no longer stand. I slumped to the floor and cried in a puddle with Kiley's mommy. I would stop and think," This is not happening. What happened to my baby. Somebody tell me this is not real. Then my crys, my pleas, my prayers would start all over again, and again, and again. My head is still reeling from the events of today. They all happened so fast. One test led to another, to another, and then before I could think I was signing consent papers for the needle and the drain to enter into the sack that so tenderly holds her tiny heart. I was told they only have to perform this once or twice a year on their transplant patients. Next I was told not to worry that what actually did happen to my Ashley only happens about 5%of the time. I still don't understand why she went into cardiac arrest. Neither do they. Tonight we are walking a fine line. Her vitals are stable. She is fighting the vent. She will not go down without a fight. They continue trying to sedate her but she opened her eyes and shook her head. She kicks her tiny bunny clad feet at them, and she waves her arms. She is there. She is fighting to wake up. She does not want to leave. She knows she has a purpose in this life. They tell me they do not know how long her heart had stopped. They did CPR on her for a full 10 minutes. They do not know if there was a lack of oxygen to her brain, but I am praising because she is physically fighting them every step of the way. I am praising because even after suffering cardiac arrest her lab work looks stable. I am praising because her blood gases are amazing us that they look as good as they do after what her body just went through, and they continue improving every hour. Only God can do this. Only God led us to this transplant center with this AMAZING staff of doctors and nurses who acted so quickly and knew exactly what must be done for her. I will forever be grateful to them.

Tonight I almost lost my youngest daughter and as she was fighting to stay with us, I was fighting to keep the best parts of me alive. As a parent, the instinct that kicks in when your child is dying can not be explained. I am not me without Blake, Allison, or Ashley. I would not be the same without them. If I could find a blessing in all of this it would be that my Sweet Ashley Kate is still with us and she is fighting to stay. I thank God for the spirit and the strength He gave her. If only I could be 1/2 the person she is. I love her...

It has been determined that it is to risky to try to attempt the procedure described in the last post. It is felt that if they tried "the heart would probably do the same thing, only maybe not having the same result." At that point they decided to leave the fluid around the heart and watch her until morning. The doctors and surgeons have gone home all hoping as we do that they will not be called in the middle of the night.

Trish described for me the events of earlier today. She said when they were going to do the needle aspiration they asked her to step out of the room for about 20 min. She went down the hall and was on the computer. She described feeling something was wrong and so she looked down towards Ashley's room. There was a nurse pushing the CRASH cart to Ashley's door. Trish began to run down the hall and one of the other PICU Moms was following her. As she was asking what was going on nobody would answer her. She began to see doctors and nurses coming off the elevator and running into Ashley's room. She heard a nurse on the phone talking to someone and describing what was going on and then heard her raise her voice and say "she is in cardiac arrest!!" then slam the phone down and go back in this room. I think she lost it at this point. I cannot even imagine the pain she was feeling at that moment. When she called me on the phone she was not even able to talk, she handed the phone off to a PICU mom who was describing to me what was going on. Then a Physician's Assistant got on the phone and began to describe to me the procedure they were going to do (which now they are not going to do unless it is an emergency to do so). At this point I am feeling completely useless to my wife and youngest daughter. I am feeling a lot of guilt for being here and not there with them. I don't know how I am supposed to keep things going in Longview while I am needing to be in Omaha. This is a hard place to be in. Tonight I pray that we would see progress towards getting Ashley home while it seems to be getting farther and farther away. Tonight as I run out of words to my prayers I am thanking Him for giving me the peace of knowing that so many of you are lifting up the Gherkin when I run out of words. And I thank God for so many of you praying for Trish.

I will update as soon as I get more news.

DAVE

The procedure to remove the fluid from around Ash's heart has not gone well at all. When they inserted the needle into the pericardial space Ashley went into cardiac arrest. They are not sure how long her heart actually stopped. CPR was given immediately and it was determined that the needle aspiration was not going to work. Now they plan to make a 2-3cm incision just below the Xiphoid process (the bottom of the breastbone) and then visualize the pericardium (heart sack) and make an incision in the pericardium in order to allow the fluid to drain. At this point I don't know if they have started this procedure or not. Please continue to be in prayer for Ashley and Trish tonight.

Thank you to the moms in the PICU who are there for Trish when I cannot be.

I will update as I get more info.

DAVE

I just received a call from Trish and today has taken a very quick turn. Ash has not been acting right for the last couple of days and we have not really had a good idea why. An echocardiogram was ordered today and it was discovered that Ash has excess fluid around her heart. At this moment they are preparing her for a procedure where they will try to drain the excess fluid. They will leave a tube in in order for the space to continue to drain. I don't really have any details at this point. They did tell Trish that this occurs in about 1 or 2 transplant patients per year. Trish is very upset right now and I ask that you would please lift her and Ash up in your prayers.

Thank You.

DAVE

As I walked down the hall behind Ashley's crib on our way back from CT my bracelet slipped out from under my sleeve and as I looked down I saw two little charms that remind me of so very much. Sacrifice. Love. Life.

Nothing worth having comes without a price. If you love something or someone you are willing to make sacrifices for them. I feel without a doubt that this is where we are at this place in our lives, and Ashley is so worth it. On several occasions, one of them being today, I have been told that what I am doing is not right. I have been told that I need to be at home with my children. I think what some people may be forgetting when they want to share this advice with me is that David and I have 3 children. God has given us Blake, Allison,and Ashley. I would do anything for any 3 of my children. If Blake were lying in this hospital bed instead of Ashley I would be here with him. If Allison were lying in this hospital bed instead of Ashley I would be here with her. There is no easy way to do this, but we are doing it. We are making the necessary sacrifices for our family. I wish that we did not have to live this part of our lives apart, but I know that through this time of sacrifice that we are all learning what it truly means to love one another. Blake and Allie miss me terribly. They miss Ashley terribly, but they would not want her to be left here alone. Because of the love that they have for their baby sister they are willing to sacrifice so that she might have a chance at life. On more than one occasion my 11 year old son has hugged my neck and whispered to me, "Thank you mom for sacrificing so much for Ashley." Even as a child he realizes that love comes with a price.

I also know in the deepest part of my heart that God has spent years preparing our family for this time that we would be spending apart. Blake and Allison are not perfect children, but they are great kids. I could not be doing what I am for Ashley if God had not created my older 2 children exactly as He did. I could not be prouder of them. They are living through this difficult time in our lives with amazing strength. I have seen them both mature in ways that could have only come through this very experience. Not only are David and I learning lessons through Ashley's story, but Blake and Allie are too. They love her so very much.

When I look at the bracelet around my wrist I see the little angel that is attatched to it. When I see this charm my heart is overwhelmed to think of the sacrifice that was made. A tiny life had to be lost in order to save my sweet Ashley's. Love beyond comprehension had to come to us from complete strangers. Her life is a gift that came through much sacrifice.

When I look at the bracelet around my wrist I see the cross attatched to it. When I see this charm my heart aches to think of the sacrifice that was made for me because He loved me. He loved me so very much He chose to give His own life so that I might have life.

Nothing comes without a price. Ashley's life costs great sacrifice from all who love her. We (Dave, Blake, Allie, and myself) give willingly to this baby girl who was given to us. We do not regret our time spent here nor the sacrifice it requires. We would do it all again and again if it were asked of us. I pray that the next time someone feels the need to give me their opinion on what I am and am not doing right that I will be able to accept it with grace and understanding. I pray that they will take just one moment and try to imagine how very difficult this is for me. God gave me 3 children and I would gladly sacrifice my all to give them life. Thank you for listening to me. Thank you for loving me anyway. Thank you for praying for my Ashley, my Allie, and my Blake. God made each one of them to be amazing children and I am honored to be called their mom. Trish

Ash had another difficult night and this morning we have increased her oxygen support to 4 liters. When we started the weekend she was only requiring 1/2 of a liter. She is struggling more and more for breath and she has begun retracting with each inhale. I don't know what is wrong this time. The team has written for an extra dose of I.V. lasix to try and pull some fluid off of her to potentially make it easier for her to breathe. We have postponed the CT scan until we can stablilze her breathing a little more. She has cried now for 2 nights, and Ashley never cries unless she is getting sick. I am concerned to see her begin stuggling again.

Another Pediatric Surgeon came in to examine her this morning. He is not convinced that the operation would help Ash. I got the impression that he does not agree that this a good idea. The transplant surgeon during rounds this morning told me that they just don't do this type of operation on any of their transplant kids. "It is not an easy undertaking." I also get the impression from him that he does not believe it is in Ashley's best interest to have her undergo such a difficult operation. He has written for a new med to be given in hopes that it will assist the stomach in emptying itself in the right direction. He is also hoping she might grow and the problems would begin to resolve themselves. I shared with you one day that Ashley's size has made the transplant more difficult on her. She was not even 14lbs. at transplant and the organs being placed into her abdominal cavity were a very tight fit. They are now laying in positions that may be causing her stomach not to have normal function. Obviously with growth she would have more room in the cavity and they would be a better fit. The problem we are facing is the fact that with her vomitting she continues to have life threatening episodes of aspiration into her lungs. These episodes are potentially deadly for her. So we are faced with extreme risk to Ashley regaurdless of the route we choose. So I find myself struggling with our options. What do we do? I really have no idea. The only thing I know to do is place her in His hands and pray that no matter what decision is made that He would protect our baby. I am again powerless. If ever I lived under the impression that I could control what happened in our day to day lives I no longer believe that. I have learned that each and every moment of my life and my children,s lives are determined by the One who created us. Honestly my heart knows that I would want it no other way, but my head continues trying to convince me that I can change the outcome of things. The only thing I truly have control over is the way that I react to what happens. Today I am trying to stay calm, trying not to cry, trying not to be discouraged. I pray that I will react to what we are facing in the right way, but I really don't know how I am supposed to.

I will post more this afternoon when I see how things are going to play out for us today. I would really appreciate your prayers for Ash. I am praying that she will be able to avoid that big machine that helps her breathe ( I don't want to say it out loud, but it starts with a V.) I am sure you know what I am talking about. Thank you for coming to check on our sweet Ashley today. It means so very much to me. God Bless. Trish

I'm having a difficult time tonight. Something inside of me wants to scream, "I dont want to be here anymore!" I know how very ugly that must sound, and it feels ugly too. It just seems like we have been here forever. This Tuesday will be 15 weeks since Ashley and I have been home. I would have never dreamed that after this many weeks we would still be in the PICU. I have no idea when we will be able to leave, but it feels like it will never come. We are all feeling a little discouraged after finding out that Ash is going to have to endure another operation. Then she will start all over and we will begin trying to get her to heal. I pray that this will be the answer and that soon afterward we might be allowed to leave. If only we could make it to the apartment. I think that would at least make us feel as though the day would come that would bring us home.

Speaking to Dave tonight I can tell that he is also feeling discouraged. Things have been really hard since Christmas. I guess it just felt so good to have all of us in the same place, and now it seems to hurt even more that we can't be together. It is very difficult to keep a marraige going from 700 miles away. I am so thankful we are not just spouses but that we are friends. I think he is doing such a fabulous job with the kids. He just came back from spending the weekend with Allie at her cheerleading competition. There aren't too many dads that would actually enjoy doing that, but he told me about how much fun it was and how nice it was to have time with just Al. Tonight Allison is practicing her painting and he is her official assisstant. His job is to hold the palet, wash the brushes, re-fill the colors, make the drinks, and too make sure they have a snack while she is working. Basically he is there to do whatever the "artist" needs done while she creates another masterpiece. I told him what a wonderful father I thought he was and he told me that he sure hopes to be. I love that his daughter is his priority. He could be watching football or reading a book or working while she was left in the other room, but he would rather spend his evening making a memory with our Allison. I love him for that. Blake is still away from home for another night since he is out of school tomorrow. He is definitely growing up and he loves to hang out with his friends. I am so grateful that God has provided him with some great guys to grow up with. I know he has really enjoyed himself this weekend.

If I didn't know better than to think that this was all about me then I would tell you that; I don't want my Ashley to be sick anymore. I don't want to live apart from Dave, Blake, and Al. I don't want to stay in this hospital another day. I don't want to miss out on Allie's cheerleading competitions. I don't want to go 3 days without speaking to my son. I don't want to spend another night away from my husband. I don't want Ashley to endure another operation. I don't want her to struggle. I don't want to live in Omaha, NE. That is the ugliness in me, but my heart knows better than that. My heart knows that this is about giving Ashley the best possible chance at life. This is about allowing her to live. This about me conducting myself in a way that my family would be proud to call me their daughter, sister, wife, and mother. This about me being a good example to my children. This about learning to be selfless. This is about a willingness to be used by the Father. This is about ministering to those around me. This about doing what is right. This is about learning how to depend on God. This is about loving my Ashley and giving her my best. This is about HIM and not ME. This is about my faith and what He calls me to do. This is about trying to bring my Ashley home to her family so that she will grow up being surrounded by those who love her. This about showing my children that it may not always be easy to serve God, but it is definitely worth it. This is about allowing Ashley's story to be written by His hand and not mine. This is so NOT ABOUT ME.

Even though my heart aches and my tears fall, I know that I am never alone. I know that I have family and friends and a Father who will cry with me on the hard days and rejoice with me on the good ones. This is my calling. I am called to be a mom. I pray that I am doing it well. I know that I am giving it my best. I know that each of you would do the same for your daughters as well. Thanks for loving me even when the ugliness spills out. I am blessed and I know that this is not about me. Good night and may the Father bless you. Trish

How happy it makes me inside to look out and see the snow continually falling. It is really a beautiful sight. It almost looks like a white, fluffy blanket covering the ground. We are on the fifth floor and I love looking out the windows and watching it fall all the way down. I have no idea how cold it is today. Yesterday it was only 8 degrees. I think that is insane.

I have spent the morning doing Ashley's laundry. If you can imagine a stack of 30 pink blankets dwindling down to only a mere 2 then you can imagine just how much throwing up my sweet Ashley has been doing the last couple of days. Any change in position makes her so miserable. We are running her feeds a 10ccs an hour trying to counter act the TPN for her liver. If you feed the bowel it protects the liver. I hate making her feel so yucky, but we do not want to lose her new liver. She actually sat up all by herself after her bath for about 10 minutes this morning. I was so very proud of her. She kept turning her head toward the baby in the mirror and waving to herself. She is now sleeping in a lavender onesie with purple flowers on it and wearing her fuzzy bunny slippers. She looks so very sweet while she sleeps. As soon as she wakes up she announces the end to her slumber by giving me a very hearty, "AAAAAGGGGHHHH". Then she quickly follows it with a grin. She is very proud of her ability to growl.

I am looking forward to tonight so I can talk to Blake and Allie. Blake has been with friends all weekend and I haven't spoken with him since Thursday evening. I miss talking to him. I hope he had a great time. Dave and Allison are on their way home from Dallas. Allison's cheer squad took third place this morning at Nationals. I am so proud of her. I can't wait to see the pictures tonight. Dave promised to send them to me.

Not much is happening here in Omaha today. I am going to sneek back into our room to watch the snow fall some more. I sure am enjoying this snow day that He provided. If only my big kids were here to enjoy it with me. Oh' well, maybe we will get some more on their next visit. Take care today and thank you for checking on our baby gherkin. God Bless.

One thing that I have had plenty of the last 3 and half months is time. I sit day after day and watch the minutes tick by on the clock. I spend much of that time playing with Ashley. I spend some of that time reading. I spend some of it praying, but a lot of that time is spent thinking and dreaming of who Ashley will become. To be honest with you a few of the dreams that I had always held in my heart for the child that God would bring to us have died, but they have been replaced with bigger things, more precious things. Things that I believe He wants for my Ashley to do instead.

I don't recall if we have ever shared with you this part of our story or not so please forgive me if I am repeating a chapter or two. One day during the spring before my Ashley was born I sat visiting with a friend. We were talking about our(mine and David's) heart for adoption. She asked me a very important question. "What are your absolute NOs for this child and for your family." At first I really didn't understand what she meant by the question. She went on to explain that this was something we needed to decide between ourselves. Did it matter where the child came from? Did the history of the child matter to us? Did we have a racial preference? Did we want a boy or a girl? What age were we interested in? We needed to know what our limitations were. Was there a situation that we would not be able to handle? I had never even considered these things before. All I knew is that I was willing and desperately asking to parent another child if it were in God's will for our lives. I went home and talked it over with Dave for a couple of weeks before we decided that there was only one thing that we did not feel equipped to handle. My answer to my friend was this, "We would probably not be the right parents for a medically fragile child." Not because we wouldn't love them, but because of our limitations. In all of the years that I dreamed of my Ashley and prayed for my Ashley it never one time came across my mind or my heart that she might be a medically fragile child. I had big dreams of holding this little one. I had big dreams of the day we would bring her home from the hospital. I had big dreams for watching her learn to roll over and crawl and walk and talk. I had big dreams of throwing a huge reception to introduce our gift to all. I had big dreams of watching my Blake and my Allie growing up with our new bundle. I had big dreams of sitting back and seeing all that this child would do in it's lifetime. I had big dreams, and I shared them with the Lord never one time imaging that our baby would not be born a healthy child. After answering my friends question I never gave it a second thought that God would have exactly what I thought I could never do in mind for me, but I am so thankful that He did.

Like I said earlier some of the dreams that I held in my heart did die, and some of them were altered just a little bit. Many of them I am scared will never come to pass for Ashley, but God has replaced them with bigger dreams. Some of the things that I dream for my Ashley are silly. Things like going on her first date with her Daddy(just like Allie did), and others of them bring me to my knees. Things like growing up to be the one to tell her own story. What a big dream this has become for me. I don't know if she will ever become old enough to stand before a crowd and share of the miracles that He has done in her life, but I sure do dream about it. Many of the dreams I have for Ashley include the shaping of her character. I believe that her experience as a transplant patient will mold her in many ways. I dream for her to have strength, to be determined, to be disciplined, to be grateful, to be appreciative, to be resolved, to be respectful, to be humble, to be healthy, to be happy. I dream of each of these things being placed inside of her heart. God has given her an amazing oppportunity to touch people's lives and change hearts. I dream of her being used by Him.

After Ash was born and we were facing piles and piles of medically fragile possiblities that she could have or develop, the one thing that David and I prayed for most was this; We wanted her to be able to give and receive love. Thats it. Nothing else mattered. If God would only allow her to know that she was loved, and if only she could love us back. This became our dream, and I will be the first to share with you that dreams really do come true. As I sit and rock this baby girl who I know loves me with all of her heart, I pray that she will grow up knowing how very much she is loved. This has become one of the dreams I am holding in my heart for her. I would like for her to see how much we love her, how much all of you love her, and how much He loves her. I spend many, many days thinking and dreaming in our room here in the PICU, and I know without a doubt that she has more than fullfilled the dream that I had held for so many years inside of my heart. I could have never dreamed He would give us someone so wonderful to call our child. I am so thankful His plan for our family included this medically fragile child. She is amazing and we are blessed.

I woke to a beautiful wintery scene outside our window here in the PICU. The snow is beautiful and it makes me miss my kids ( my Blake, my Allison, and of course the big one, Dave). They would love it. I just spoke with Allison and told her how much I loved her, I was praying for her today, and I am so very proud of her. I asked her to do her very best and to have a GREAT time. She is now on the warm up floor preparing to go on. Oh, how I would love to be there with her this weekend. Dave assured me he is busy being a "shutter bug" , and I hope to see the results of todays competition by tonight. I think he learned a valuable lesson after forgetting to take pictures of Blake's birthday in the fall. He doesn't want to listen to me cry.

Ash had a long night. She was nauseated and vomitting several times throughout it. This morning we have decreased her feeds and unfortunately we have to go up on her TPN. We are also going to start weaning the hydrocortisone steroid that has caused Ashley to lose her "face". Dave and I are very upset at her appearance because of this steroid. They are treating her with it based on an assumption and with no proof that she really needs. It has completely shut down her adrenal system and now it will take weeks and weeks to get her off of it, but I want it gone. This morning she couldn't even open her eyes because it has caused so much swelling in her face. It is so difficult for me to see her this way. She has lost all of her tiny features that God gave to her. I think it will take about 5 weeks before she cant come off of it completely. I can't even bring myself to take pictures of her looking this way. The good thing is that she is still so very happy. She has been playing with the baby in the mirror all morning and she is now down for a little nap.

Today starts the beginning of a long and slow weekend. Sometimes I welcome the quietness in the halls over the weekends and other times it seems to make it drag on and on and on. I am trying not to think about the upcoming surgery and procedures that lay in store for Ashley. I am going to concentrate on playing and loving her as much as I possibly can. Thank you for your prayers this morning and for coming to visit. You are loved and appreciated.

Tonight Ash and I have spent the evening playing and rocking until she finally decided she would like to go to sleep. As I cuddled with my pink bundle I felt an overwhelming peace and calm inside of me. I was looking at her "pudgy" (due to her new steroid) little face and enjoying everything about her when I realized that it was going to be ok. Whatever comes our way it is going to be ok. However the Father decides to write the next few weeks of Ashley's story it is going to be ok. It is going to be ok because I know that I can trust Him to do what is right.

"Do what is right no matter what. Always do the right thing and people will know you because of it. No one will ever be able to make accusations against you if you are known for doing the right thing." What a valuable lesson I was taught by my dad. It is this lesson that I learned so many years ago that helps me to thank the Father when times are tough. It is this lesson that helps me to give Him praise even when my heart is broken. It is this lesson that allows me to know that He is still good although things have not gone according to my plan. I will serve Him no matter what because it is what is right. Even when my hope is fading and my heart is confused by all that is happening in my Ashley's life He is still God and He is worthy of my praise. I don't know how to do this any other way.

I have come to realize over the last 14 weeks that our tiny Ashley and her story is so much bigger than just us. It reaches outside of our family and extends to places that only God could take it. I am learning to step back and allow it to go where He leads it. This has not been an easy thing for me. As a mom I wanted to keep all of these things inside of my heart. I did not want to share Ashley's life and her story with everyone else. I wanted to protect our family from any scrutiny that might come from others who may not understand just how wonderful she is. I did not wish to be judged for putting my family out in the open and for spilling my heart into this journal. I honestly wanted to keep her all to ourselves and just allow her to be our sweet Ashley. I am so grateful that God had other plans for her life. I would have missed out on so much. This journal has become a source of strength for me. It allows me to look at all the wonderful things God is doing in other people's lives while He is working in Ash's. She is a miracle and He is using her to change my heart and many others. No matter what happens and where He leads I have finally come to understand that it is going to be ok.

My heart may be hurting and I may be confused about what the future holds for my youngest daughter, but tonight I will rest in the knowledge that it is going to be ok.

I have never been so cold in all of my life! I didn't even know it could actually get this cold. I just ran over to the grocery store to pick up some fruit and the temperature outside is 10 degrees. Can you believe it? The wind chill is minus something. I am so thankful that Ash does not have to feel this cold air. I couldn't even breathe. Living in Texas (where it was a beautiful 70 degrees today) I had no idea the weather could actually make you hurt all the way to your bones. Thankfully I don't venture out too often and I should stay tucked inside the PICU where it is nice and warm while the storm is here.

This afternoon I spoke with the Pediatric surgeon who will be doing Ashley's operation. He said that they all agree it is necessary, but they are not sure how to perform it on her. Ashley has had many operations in her little lifetime and her abdomen has alot of scar tissue built up. This will make it very difficult. There are areas where the new organs were grafted that are "paper thin" and this makes it dangerous. As they attempt to cut through the scar tissue which is very thick they will try not to perforate the new organs. They are trying to decide if they should make an incision in the side of her chest and seperate her rib cage to try and avoid the danger. At this point they are looking at several options and searching for the safest way. I am trying not to think about what Ash will have to endure. My heart breaks and my eyes fill with tears if I talk about it. I am afraid this is going to be a very long 2 weeks.

One thing I am more than grateful for is that my sweet Ashley has no idea what the future holds for her. She is not worried. She is not scared. She is happy and content to play with her toys and have her mommy rock her in our"favorite" chair. For this I am thankful. Well, am going to go enjoy my bowl of vegetable soup and watch my Ashley rest. Take care and have a wonderful evening. May God bless. Trish

Waiting is not one of my strengths. I know patience is a virtue, but it is not one I was blessed in abundance with. This morning I will begin waiting and waiting and waiting. I am not sure the test this morning was successful. We tried every drug in the "cabinet" to knock my sweet baby out, but typical to her nature she wanted to do things her very own way. Her way was definitely harder. ( As I sit and think about that it reminds me of myself and how many times I have wanted to do things my own way instead of His. It is always harder than it should have been.) Since Ash did not sleep through the test she had to be strapped down with large velcro straps across her body. She did not like this. She growled and grumbled and twisted and turned trying everything in her power to get out of the situation(again this reminds me of myself). We continued on with the testing even though we are pretty sure the pictures won't be very clear because of all her movement. The data from this test is going to be combined with several other things to help make the best decision for Ashley. I won't be surprised if they need to repeat it next week. Remember that I said patience is not one of my strengths, this test lasted for 90minutes once she was secured on the table. My patience was wearing thin not to mention Ashley's.

When the team rounded this morning the transplant surgeon shared with me that after visiting with the pediatric surgeon and the pulmonoligist that they all agree some type of operation is necessary. They have not decided what it the best way to approach Ashley's anatomy. They are going to take their time gathering tests results and then meet together to develop a plan that will be the safest way and involve the least amount of risk to Ash. They are planning a CT early next week, and depending on its results a possible bronch procedure(this goes into her lungs and shows them where and to what degree she has aspirated and the damage done by it). David and I appreciate the thoroughness they are using with our Ashley. I am thankful they are not making hasty decisions that could jeopardize her survival. It may take them up to 2 more weeks of meetings and planning sessions before they decide to take her into surgery. How I wish I was more patient at times like this. When they told me 2 more weeks I immediately thought that is 2 more weeks of waiting, 2 more weeks away from Dave, Blake, and Allie, 2 more weeks of delay in Ashley's progress, 2 more weeks of TPN, and then I stopped and thought to myself that is 2 more weeks to see what God will do in her life. When I look at it this way it doesn't seem so bad. God could do BIG things in the next 2 weeks. This is my prayer.

Ash is now sleeping and she probably will sleep for the next 2 weeks because of all of the drugs she was given this morning. I am expecting a lazy afternoon for the two of us. The forecast says that a snow storm is moving in tomorrow. Don't tell Dave. He would be so disappointed that he is missing it. I am looking forward to watching it fall and remebering the excitement on the kids faces as they played in it. I really love that we have the ability to make memories and cherish them for our lifetimes. What a wonderful gift that is. I guess I will go back into our little room here in the PICU and begin my waiting. I wonder what He has planned for us next?

I am amazed and blessed by so many who have become a part of Ashley's Story. I have included a map below which shows the states from which someone has logged on (in the last month) to check on our Ashley. If your state is not colored red please post a comment or send an email to let me know I missed it. If you know someone in one of the grey states please ask them to visit Ashley's Story and post a comment so I can color that state red. I am hopeful we can reach all 50 states. Thank you for your help.





This is a world map showing how God has used Ashley's Story to reach so many. I thank Him for using Ashley and our family to help us tell so many about the good things He has done for us. He truly is an Awesome God. I pray that He would continue to use us to tell others about Him.

If I have missed your country please post a comment to let me know. I appreciate your help.






I plan on expanding these maps and I will keep them. One day I hope to sit with my daughter and show her how many people love her and pray for her. Thank you all for reaching out and caring about our little tiny Gherkin.

DAVE

PS: I will update this in a month or so if I can start to color things red. Thanks for your help.

Welcome to our friend from South Carolina, I have been waiting for you. Thanks for visiting Ashley's Story.

I just wanted to take a moment to say Good Morning to all who have come to check on my Ashley today. You will never understand how very much you have blessed my heart. Thank you for praying for us today.

Ash did sleep all night long, shame on her. I finally came in and laid down on one of the couches at some point during the night. I rarely ever do this, but for some reason I could not get settled last night. ( I am in desperate need of an adjustment! Being married to Dave has some real benefits. Not only is he wonderful, and handsome, and funny, and a great father, etc, etc., but he is also a very good chiropractor who takes such good care of me.) Ash is still all snuggled in her pink "every princess needs a castle" jammies(Thanks Christy, we have always loved them), and she looks so very tiny to me in her great big crib. Last night as I watched her sleep I thought to myself how very much this shiny, silver crib looks like a cage. Anyway my heart was heavy and my prayers were scattered as I made many attempts to talk to the Father. I am so thankful He hears me and can make sense of my ramblings. I am praying todays test will help to make the best decision possible for Ash. This will be a long weekend for me as I wait to hear what all of the results are and what everyone thinks is best.

Oh,well I really didn't have anything to write except that I pray God blesses all of you today. Your friendships mean so much to me and I am blessed to "know" each of you who come by to visit Ashley's Story. Thank you for loving our Ashley. I know you don't have to, but you have made the choice too. Your faithfullness to come back again and again gives me strength. Your words are encouraging, and your prayers so very valuable. May you have a wonderful day! Love, Trish

I am sure no one will be suprised to learn that my sweet baby girl is SLEPPING soundly. The one night that she is supposed to be awake and causing trouble, she has decided to lay all snuggly and warm in her bed. There is no waking her. We have weighed her, changed her, taken her vitals (she always complains during the blood pressure), given her meds, and we get nothing other than a cute little squeek and a roll over. I can't help but smile to myself knowing that she knows good and well that they would like for her to stay awake tonight, but instead she continues calling the shots. This is so "Ashley".

Talking to the kids tonight left me with such a longing to be at home with them. I miss them so very much. They are growing up and changing while I am away, and I know that I am missing out on it. Blake was his happy go lucky self telling me that he really is smarter than his dad. "Honestly, mom I am. I proved it." They were both testing themselves on some type of Brain game on Blake's nintendo ds and he happened to score higher on it than his dad. Dave will never live this one down. Dave is so very tired and when I spoke with him he still had hours of work to do before he could lay down. No wonder Blake outscored him. Allie is missing Ash and I terribly tonight. She asked me if Ash had a surgery today. I told her no. Then she wanted to know does she have anymore surgerys(I have no idea how she knew to ask me this). I told her the truth. I think we will have another one coming up next week and this made her cry. I asked her not to worry about it, but when your eight and your 700 miles away from your mom and your baby sister I am afraid this is what she does when she lays down to sleep. She has a National Cheerleading Competition this weekend and I wish I could be there with her. It is such a big deal and it really is a "mom" kind of thing, but I am sure Dave will do a great job with her. I am hoping to make it to the one in February if Ash is stable enough for me to switch places with someone over night. I am praying all will be better by that point.

Well once again I am reminding myself that God is not surprised that Ash and I are still here in the PICU. Even when the days events catch me off gaurd He is not. I don't know if I could do all of this without my faith. The journey we are on is hard and long and it is not easy. If I thought that I had to do this on my own I would have fallen apart a long time ago. I know that when Blake and Allie have been tucked into bed, and when Dave has finally gone to sleep, and that when my Ashley is all snuggled into her crib, and I go lay down in my chair that the God that I believe in is there. He is in all of those places watching over all of the ones who I hold so close to my heart. It is this faith that keeps me going when I want so desperately to grab my Ashley and run. It is this faith that gives me peace when all is a mess. It is this faith that allows me to let go and let Him take care of this precious family that He has trusted me with. It is this faith in God that will get us through another trip to the OR. It is this faith that allows me to close my eyes and drift off to sleep. Good night from the PICU, I hope your faith is strengthened as you watch my little Ashley's Story be written. I hope your faith encourages you to do big things with what He has trusted you with. I hope your faith carries you on the days when you feel that life is too much. Thank you for praying for us. We love you all. Trish and Ash

Finally after many, many hours of sleep my headached has retired itself for a little bit. I am so very thankful for this. Hopefully I will be able to think clearly before it returns. Ashley and I have spent the day SLEEPING. It has been wonderful. You may be wondering why we would allow her to continue with her days and nights all mixed up, but can you believe that it is actually written in the orders for her to stay awake all night? I know what you are thinking, knowing Ash and how awnry she is this will be the night she chooses to sleep. I am bracing myself for it. They would like her to stay awake so that she will be very, very sleepy in the morning during her tests. The tests will last for 90 minutes and she needs to be still and asleep. They will be using some very light "sleepy medicine", but Ash usually only stays asleep for about 30 minutes on it. This should be very interesting.

The last couple of days have been very trying for me. I have struggled with the idea of taking Ash back into the OR for such a major surgery. This morning I learned that her liver(which is a little too large for her because she was so tiny at transplant) will have to be lifted out of the way in order to work on the esophagus. Something about this part of the surgery has me on edge. It makes me very nervous to think that we will be "messing around" with her new organs which have been working so well. I am praying that God will protect her organs and allow them all to go back into the right places.

I know that through Ashley's story I am being taught to really and truly trust God. Each day I see more and more that I am not able to sustain her life, or to bring healing to her, or to make her whole. It is only the God of the universe that will be able to do things in my Ashley's life. As I think about how it feels when they take Ash out of my arms for each and every procedure it makes me physically ill, but I am learning to rely on Him more and more with each one. I am learning to be more grateful for each good day we are given with her. I am learning to savor the moments when I rock her in the chair and whisper prayers of thanksgiving for this little one. I am learning to enjoy the little things that she can do. I am learning not to worry about tomorrow because I do not know if it will come. I am learning to live each day with her and not take it for granted. I am learning to have a grateful heart for the things He has done.

This afternoon I sat and rocked my Ashley and fell asleep with her in my arms. As I sat and thought about this journey we have been on for the last 17 months I cried. My heart was so full of gratitude. She is amazing and wonderful and beautiful and sweet and so very precious not only to me but to HIM. Although there have been tough times, the joy has outweighed the sorrow, and I would not trade one moment of her life for anyone elses. She is a gift and He gave her to us, and I will forever be humbled and grateful that she is mine. Trish

So sorry for just now showing up today. Ash and I have not slept and I am having a definite withdraw problem myself. I have given up on diet coke for a short period and my head is definitely taking the brunt of my decision. I never even drank diet coke until Ash was born, but living in the hospital for the first 6 months of her life it flowed "freely"(literally it was free), and before I realized it I was hooked. Now I stumble to the fridge first thing every morining looking for my "fix" of diet coke. I know this must be sinful, and I am trying to clean myself out, so out goes the diet coke and in comes my severe headaches. Dave thinks it should last for about 3 days. I hope he is right because I can't even function at this point. Shame on me! I know that this withdraw from my addiction in no way can compare to what my Ashley must go through on the days when they wean her meds, but it is giving me more compassion and understanding for her each minute as my head continues to pound behind my left eye. I believe a good long nap might help.

I met the pediatric surgeon this morning who would perform the "fundo" on Ash. Basically he told me he" was not going to ride in on a white horse and save the day." He feels that any surgery performed on Ashley at this point would place her in high risk, and he is not willing to jump into this decision quickly. He is going to gather a lot of data from the ph probe, the GI tests that have been performed, the emptying study (being done tomorrow morning), the bronch procedures(she has had 2 of them), and then talk to the pulmunologist who has taken care of Ash, and then talk with the liver transplant team as well. He just shared with me that we need to weigh the high risks invovled to Ashley before making a final decision. So at this point we are still waiting to figure out what is the safest thing for Ashley. Unfortunately every option we are facing involves a lot of risk to our daughter. Please join us in praying for the safest solution to resolve Ash's eating problems.

She is finally sleeping and I am going to go lay my head down and talk to the One who created this beautiful little girl. I know He sees her tomorrows and I am trusting Him with them. It gives me great peace in the midst of all of this chaos to know that He has the ultimate control. He is trustworthy, and He loves Ashley more than I can fathom. I just want to lay back in my "favorite" chair and rest knowing that He has it all under control. Thanks for loving Ash. Thanks for praying for Ash. Thanks for coming back day after day to see how she is feeling. Trish

The test results are in from the pH probe test. It has been determined that with the introduction of the feeds Ash's stomach is producing more pickle juice. Great that is what is supposed to happen, however the stomach contents are not all heading south, far to many are going north. Over the course of a 24 hour period Ash was refluxing over 250 times. That is one Burpin Gherkin. This means every 5 min or so she has pickle juice flowing the wrong direction. Now we are knowing why our little Gherkin has been so fussy. Trish did not get a bit of sleep last night as Ash was crying, uncomfortable, and throwing up most of the night. This morning Trish convinced them to turn off her feeds and within a matter of minutes Ash was up and playing and having a great time with that little awnry personality we have come to appreciate. So the decision has been made and we are going to move forward with the Nissen Fundoplication. I won't take the time to go into details about how this works, I will just some it up by saying they will open her back up and tie a knot around her esophagus with the fundus (top part) of her stomach. The idea is that the band of muscular tissue will support the action of the esophageal sphincter and Waala... significantly reducing the reflux. So goes the plan goes. Pickle juice all flows south and we are left with one happy Gherkin. Unfortunately for Ash there is not an easy way to do this surgery. Once a transplant patient always a transplant patient. Her graft(new liver) is partially lying on top of her stomach and thus the operation is going to require opening up the original transplant scar and lifting the liver out of the way in order to gain access to the stomach. Another chapter in Ashley's Story.

Thanks for reading along as we write this story. Thank you for your prayers as we face another difficult chapter. Thank you for your comments and guestbook entries as they help us see those who love our Gherkin. Please lift up Trish today.

DAVE

My sweet Ashley is so very, very nauseated. She has spent the better part of the day vomitting. She is so sick. If she is awake she is throwing up. If she is asleep and totally still she manages to keep it all down. Have you ever felt like you were wandering in circles? Kind of like the Israelites as they traveled to the promised land. That is how I feel today. It hasn't been anywhere close to 40 years, but 14 weeks in a hospital is starting to feel that way. I don't want to sound like I am complaining, and I don't want any one to think that I am questioning God. All I am saying is that there must be a reason somewhere for why this is happening. I have decided to work on my prayer life and I am trying to seek God in a new way. If there is anything inside of my heart that could be hindering my Ashley from getting better then I am on a mission to find it. I am praying that God will honor my quest and reveal to me what it is that I need to find.

Today I have found it very difficult to stay positive. For some reason every thing seems to bring me to the verge of tears. I have tried to stay in our room so I would not say negative things about our situation and so that I would not get myself in a position that would make me cry in front of others. I am trying so hard to be strong, but I feel like Ash and I are wandering in the desert with no clear direction. We just continue to wake up and walk, and walk, and walk in complete circles.

Although today has been tough, I would not trade my time with Ashley for anything. I know too many families who would gladly trade places with me so that they could hold their children just one more time. I know we are blessed, and I know that God will make a way for Ash to eat. Hopefully this next operation will help. Even when she is sick she is wonderful. I love her so very much, and I wish that I could make things better for her. It doesn't even help for me to hold her right now. It just makes her feel like throwing up. Tonight I will be praying for a better tomorrow for her.

In closing let me just say that I know our wandering will come to an end when He plans for us to make it into our Promised land. Some may find this funny, but to Ashley and I our Promised Land happens to be in a little yellow house, in a friendly little town, in the great big state of Texas. (I just hope there aren't any GIANTS hiding in there!) Thank you for being here with us on the hard days. I know its tough, but your continued prayers are so appreciated. I am going to go watch our little "pickle" sleep. Take care, Trish

Blake and I decided to cook dinner for the girls tonight. It was really his idea so don't give me the credit. I found a couple of cans in the pantry that Nan had recently bought at the grocery store. Stir fry. In a can? OK my better judgement says no, but most of the time I am inherently lazy when it comes to cooking so I will give this a try. Now Blake is a bit smarter than me when it comes to these things so he decided to put a frozen pizza in the oven for him and Allie. Smart boy. I put on the CD of travel music I made after our vacation last year. It is songs they played while we were away that I like to listen to while I dream about going to the Caribbean. I opened the meat can, yeah I know meat is not supposed to be in a can, and poured it into the pan. Dog food? I promise you this stuff smelled and looked just like dog food. We are not off to a good start. The stuff in the attached can must be better than this. I started heating the ??meat?? and Blake and I began grooving to the Vacation music. Well the dang smell was really starting to get to me from the ??meat?? so I decided to drain the juice off the junk. In the pantry I found a bottle of Kikkoman stir fry sauce. I cautiously tasted it and found that it was quite good. Maybe if I drain enough of the dog food gravy off the ??meat?? and pour in some of this stuff it will be OK. So as I am doing this Blake starts to show me his break dancing moves. WHOA, flashback.....I am remembering when I was his age all decked out in my parachute pants with 48 zippers doing the backspin on the cardboard in the living room while watching the Electric Boogaloo. Scary!! Well he showed me his stuff and then I ask him to step back while I showed him mine. Uh Huh.... Look out! I do that spinny thing I used to do when I was 14 then broke into my best backspin on the kitchen floor. I didn't break anything, in fact I think I was spinning more than when I was 14. I may have to take this up again. I know Trish will be so proud. Well now I have the, veggies from a can, heating up with the ??meat??, I have to do something, I got an idea maybe I can find some real meat and add it in. I opened the freezer and found a piece of chicken. Dad gum it, chicken takes to long to thaw, if only I had some shrimp. Hey look here I found a few shrimp. I began to thaw those little critters out and realized how bad they smell. I know Trish would not approve. I am glad these things taste better than they smell. I got the little guys thawed and threw them in with the ??meat?? and the questionable veggies and by this time Blake's frozen pizza is starting to smell pretty good and I don't even eat pizza. Things are cookin' now and we are both doing the Tootsie Roll across the floor. Slide to left, Slide to right, to the front, to the front, to the back, to the back now dip baby dip, dip baby dip, OK, we looked pretty ridiculous but we are making memories and it was reminding me of the time we did this with Goofy and Mickey. That was so much fun. Long story short, the food did end up tasting pretty bad. I have other words and descriptions of the flavor, but since this is a family blog I will bite my tongue and just say it tasted bad, really really bad. I would recommend you never try the La Choy stir fry in a blue can. YUCK!! I am glad I had a really good lunch with the Longview Too AMBUCS at Pappacita's Mexican restaurant. Look at the bright side, I had a really great time dancing like an idiot with my son in the kitchen.

Goodnight,


DAVE

I posted this and looked at the picture and it looks pretty good. But do not be deceived.

STAY AWAY FROM THE LA CHOY!!! They should call it La Poo Poo

PS: I just cleaned the kitchen and put the left overs down the garbage disposal. Have you ever seen a garbage disposal vomit?

Its not always easy to do the right thing. It is not always easy to make the right decision. Its not always easy to keep from second guessing the decisions you have made. It seems as though nothing has ever been easy for Ashley.

This morning during rounds it sounds like we will be heading back into the OR to have a fundoplication (nissen) performed on Ash. It has been determined that "she continues to have life threatening episodes with aspiration due to severe reflux." Obviously this is not the news we had hoped to hear after trying to feed our Ashley for the last 14 weeks. I know that several children have had this operation done and that it seems to be a very simple surgery, but because Ashley is a transplant patient her situation is very, very different. When you take Ash into the operating room you open her up to a huge group of complications that a child without transplant would never face. Ashley will be opened up from the top to the bottom going through the same incision that was made for her transplant. She is at great risk for infection and for perforations to the grafts of her new organs. She will basically be starting back at the beginning as far as healing and progressing goes. Needless to say we are very disappointed and concerned about taking her back in. She will be on the ventilator and we will start climbing the same mountains to get her back to the place she is now and hopefully a little farther. They will be conducting a couple more GI series to collect some more data and then they will schedule surgery for sometime next week. A pediatric surgeon will actually perform the operation along with her transplant surgeon. Ashley's feeds will be stopped and then eventually started back at 5 ccs and hour. The goal still being 55ccs per hour to get her off of TPN completely. I am concerned about the prolonged use of TPN and its effects on her new liver. Making this decision is not easy, but I asked the surgeon this morning what holds greater danger for Ashley, doing the "fundo" or trying to manage her vomitting and praying she does not aspirate. Her answer was positively doing the operation. As tough as this is going to be for Ash, in the long run I pray it will help her to eat, grow, and live. Parenting is not an easy job. These decisions are difficult and painful to make. I pray we are doing the right thing. I know that the Father is watching Ashley and taking care of her. I know that when they take her from us and place her back in the OR that He will be there holding her hand while I cannot. I pray that this is the answer for Ashley. After this operation I am praying that she will come back stronger, healthier, and able to leave this hospital behind. Please, Father guide us through this decision making process, and allow us to take her home.

Our hearts are heavy. We are concerned. We are nervous about what the future holds, but we are confident in this: He has a plan for our daughter's life. He loves her and wants the best for her. He will not leave us or forsake us. He brought us to this place, and now we have to trust Him with her life. I pray we are making the best decisions for our Ashley.

Yesterday after picking the kids up from school I took them to the bowling alley. Allison always tells us she is the "bowling Allie." So the "bowling Allie," "bowling Blake" and "Bowling Dave" gave it a go. Now we don't bowl but a couple of times a year so we have to have a little help, yup, the bumpers are coming out. Can someone please explain to me how I can get 3 or 4 gutterballs with the bumpers out. Couldn't they have just made those bumpers about 5 feet longer. Yes, I think they could have. Well I hit a few here and there, the kids each hit a few here and there and we all had about the same score up till the end. We got to the 10th frame and I had managed to get one spare and I think each of the kids had 2 spares. So the pressure was on, I had to get a spare or a strike to stay in it. Somehow Blake got out of turn and managed to get ahead of me. He through a spare and I knew that meant he would get an extra ball. I looked up at the monitor and realized he had gone for me. He had gotten me a spare in the 10th frame and I took my extra shot. I hit a couple and ended up with a grand total of ........... 94. Ouch! Now it really was Blake's turn and he was not able to get another spare. He ended up with 91 points. Allie was just a few behind. Now I have a problem because Blake knows that he beat me, not that I beat him. There went my bragging rights. We had a great time and I am looking forward to Mom and Ash coming home and bowling with us. I could have taken the kids straight home and made them start their homework and then we could have done some yard work or cleaning, but I will keep the leaves in my yard and a dirty living room and trade them in for a bowling memory with my kids.

PS: I think the ball I used weighed about the same as a Gherkin.

DAVE

I am making a list inside of my journal. A list of names that include some of the most precious children you would ever meet. As the list grows I find myself struggling to come to grips with the contents of it. How I wish it were a list of goals, or hopes, or dreams instead of a list of rememberance. I never want to forget the children who are on my list. I never want to forget the lessons I have learned from witnessing their struggles. Tonight another child slipped from the halls of this PICU and was received into eternity. My prayers are with her mother and her family. I take comfort in knowing how much the Father must love these children and knowing that He loves them as much as He loves my Blake, my Allie, and my Ashley.

It doesn't seem right to watch a child die. To see the parents leave this place with empty arms and broken hearts is so very difficult. To be a parent who has a child whose life is just as fragile makes it even tougher. How I wish that there were no illness or disease or trauma. I wish that all of our children could have been born with strong and healthy bodies. I wish that some did not have to struggle so hard and endure so much, but along with the struggles of my Ashley comes the building of our faith. Even on the days when I feel as though things are tumbling down around us I know that He is there. I can look back over the last 17 months since her birth or over the last 14 weeks (tonight) since her transplant and see the very hand of God in our lives. We have not walked one day of this journey alone. He has been and still is there with us picking us up on the hard days and blessing us beyond what we deserve on the good days. His love is constant. His grace is sufficient. His hands are big enough, and His heart is willing.

Along with my Ashley and her struggles to make it out of this unit there are several others who have endeared themselves to us. As you pray for my daughter if you would please remember the others who are on their own journeys and who are having the story of their lives written up here as well. These children are locked inside of my heart and I will carry them always. If you would please add them to your prayer lists I would forever be grateful. Our friend Skyler, our friend Kiley, our friend Preston ( who is needing organs), our friend Ginny, Michael, baby Anthony, baby Kinnick, a newly transplanted child as of last night, and one other little boy who I do not yet know. These children have mommys, daddys, grandparents, siblings, aunts, uncles, and families who love them and who hurt along with them just as we hurt for our Ashley. I know they would welcome your prayers. Please don't ever doubt just how precious your prayers are to us. Through Ashley's life Dave and I have learned the value of prayer. Talking to the Father, the One who created it all, the One who holds all of our lives in His hands, the One who does miracles, is such a privelage. He loves us, He loves you, He loves all of these children here in this PICU, and He loves my Ashley. This is something I want to remember.

I find myself still searching. It seems as though I have been searching for answers for so many, many days now. I have searched for reasons, for understanding, and for help. Each time I end up looking inside of myself and searching my heart. I am desperately looking and asking for God to reveal in me the areas that I need to be working on.

There have been days when I felt that I needed to pray and found myself speechless. There have been days when my prayers seemed to ramble with no order or no clear thought. There have been days when my prayers have only consisted of two words, "God Please." Then there have been days when I have allowed all of you to carry us along with your prayers on our behalf. Today I am starting new(again). Asking Him to show me, to use me, to teach me, to carry me, to help me.

Although my Ashley has been feeling yucky for most of today she still has managed to make myself and others smile. There is just something about her that brings such a joy to those who know her. To be completely honest with you, I have been discouraged and depressed for most of today. Feeling as though we had no where else to turn, and then out of the blue He uses my Ashley to bring this all back into perspective for me. She woke from a long afternoon nap and as she laid there next to her baby in the mirror I watched her begin to play. (She really has no idea that her "best friend" she loves so much is actually just a reflection of herself.) She started out her playtime by clapping her hands. She then got tickled because she noticed her "friend" doing the same thing. She started smiling and her "friend" smiled back. She touched the top of her head and her "friend" did the same. This too caused another grin to come across their face(s). Next she clapped, then touched her head, then pulled on the probe that was taped to "their" cheeks. She became so excited at "their" play that she started kicking her feet and much to her surprise her "friend" had the very same pair of bunnies that she has. My heart was so blessed as I sat across the room from "them". In every circumstance that Ash finds herself in she manages to find joy. If she is sick and feeling yucky, she finds joy between the vomitting. If she is stuck on the ventilator, she finds joy by playing with her toys above the breathing tube. If she is feeling pain from enduring sticks and pokes, as soon as they stop, she manages to find joy and produces a smile. She is amazing. She inspires me to keep going even when I am discouraged. She forces me to dig deeper inside of myself and search for what I am supposed to be doing while we are here, what I need to be learning while we are here, who I need to be ministering to while we are here, and how I need to be serving Him while we are here.

As I continue searching inside of myself, I am praying that He will reveal new things to me. More ways that I can be a better person. More ways that I can be a stronger believer. More ways that I can be a truer friend. More ways that I can be a more loving wife. More ways that I can be a better example to my children. More ways that I can help my youngest daughter fight to live. Tonight I am searching, and when I think I have found what I am looking for I pray that He will deepen my search and show me who it is He wants me to be. How thankful I am for this little girl that He has given to me to love, to know, to learn from.

This day has not been going the way that I had hoped it would. We started off early this morning by placing the PH probe through Ashley's nose and down into her throat. She Immediately began to throw up and has not stopped all morning. She is miserable and feeling so nauseated that she can not even sit up. She fell asleep from 10:00 until 1:30 and as soon as she woke up it started again. To say that I am struggling and disappointed is to say the least. I don't know what to do. Eating is the most basic and simple task that we all take for granted. It comes so easy to us, but for Ash she can not eat. I am at a loss. What do we do?

I know that the next discussion on the list includes another operation. I am terrified. The thought of opening her up for the 4 time and starting at the beginning makes me physically sick. I want so badly for Ash to eat and grow and advance. Today home seems so very far away for us.

In the midst of all of the disappointment I know that God is never caught off guard. He knew well in advance the struggles that Ash would face, and He is with her through each and every one of them. I am confident that He will work this through, I just don't know when. So today has been tough and it has been trying. I am discouraged, but we are still here. We are still fighting to find answers, solutions, and resolutions. I pray that He is holding the answer to her struggles and that He might share it with us very soon. Thanks for praying for our little one. She sure needs it, and it means so very much to her mommy and daddy to know that you are out there and that you care. May He bless you today. Trish

My most beautiful lovely wife called me at 10:06 and asked me to tell her how to upload some pictures onto Ashley's Blog. I knew this would not be an easy task. Telling her how to do this over the phone would be just as easy as me hoping on a broken camel with both hands tied behind my back and riding to Omaha blindfolded while she talked me through each turn while reading a map with her eyes closed, while someone poked my feet with a 1000 hot pokers, while someone else jabbed acupuncture needles in my poor blindfolded eyes. (and I would probably have to get past the TSA guys first) Did I mention I knew this was not going to be easy. I really wanted to see the pictures so I agreed to give it a go. It went something like this. I would tell her to click this and click that and tell me what it said, then she would tell me she didn't know what I was talking about. Then I would tell her to click this and click that again and she would tell me about something else that happened. "OK, let's switch gears" I would say. "Close all the windows and go back to the desktop. OK now open this and click that" and then she would say "OK, now I see the pictures." "Great" I would say believing we were making progress then I would hear something along these lines. "Uh Oh. Everything just disappeared." "OK, close all the windows and let us begin again. Click this and click that and what do you see?" "I see this and that," "good now click this and that and what do you see?" "I see the pictures." "Great, now right click on the picture you want." Then she would say something like "how do I right click?" Did I mention that this was not going to be easy? So I talk her though the right click thing and ask her to do this and that. Well I could go on longer but you are starting to get the idea. As you can see by the pictures below after about an hour and half she did manage to get a couple of pictures of a Gherkin with one bad attitude on the blog. To tell you the truth I am really quite proud of her. I asked her if she would be posting more pictures now that she knows how. She just laughed and told me she has no idea how she did it. I have confidence in her, I know next time we put the pictures on via the phone she will get them on in less than an hour.

It's midnight where is that darn beeping coming from? .........Oh, I found it, Allie had her alarm clock set for midnight. Not much of an alarm clock, she is sleeping soundly. At least I stopped that dang annoying sound.

I love you Trish, you did a great job. Tomorrow let's get some pictures of her playing and smiling. Goodnight.

DAVE

I am EXHAUSTED! I have just lost round one of wrestling Ash in her Christmas dress. Trust me, there will be a round two. Just not today! She has worn me out. I tried. Honestly I did. I used every trick I know and she came out on top today. It may be March, or April, or possibly May before I get a "good" picture of my baby in her Christmas dress, but I will succeed. I wish you could have seen the match. She just out smarted me. It didn't matter what angle I tried to set up the photo she would intentionally "growl" and turn the opposite way. I mean it. She was determined to ruin this photograph. I have witnessess. The chaplain tried to make her behave. He tried to make her smile. She beat him too. The RT came in and tried to get her to cooperate, but in the end he gave up as well. The dress is just so beautiful that I wanted a "Christmas"( I realize it is over) photo to put in her scrapbook, but she doesn't care. She really and truly hates the dress.

The nurses on the floor today are trying to convince me that she just might be a tomboy in the making. Excuse me? Do they realize who they are talking too? Not my daughters. They will be little girls complete with holiday dresses and BIG hairbows. Why else would God allow me to have them? I will mold this attitude I saw displayed in her today. It may take me a lifetime, but I know that God gave me this stubborn little girl for a reason. She will be a young lady if it kills me! Honestly, she is just the funniest thing you have ever seen. As soon as I gave up (because I was out of breath and sweating from the wrestling match) she was smiley, and happy, and cooing, and ready to be so very sweet. All she needed was for me to take that dress off of her and she was available to me to take as many photos of her as I would like. Did I tell you how much I love this awnry little one. She makes my heart smile. She is now napping because she is tired from displaying all of that bad attitude. It is hard work to be naughty!

Other than misbehaving during our photo shoot, she has had an ok day. She is very nauseated today, and they have decided to place the Ph probe in the morning instead of today. Each time I pick her up or lay her down she begins to gag. It really is positional. As long as she is still she doesn't seem to have any trouble. I just pray that as we take it slow she will adjust and be able to keep her feeds in. She has to eat. There are no other options. TPN will destroy her new liver if she has to continue on it. I am trying not to get worried about that because I know that the Father already knows that she needs to eat to live, to grow, to survive. He has a plan for her. I know that He does.

This morning my Ashley is so very sweet. Her smiles are contagious! Everyone who has passed by our room has had to stop and visit with our sweet girl. We started the morning off right by taking a bubble bath. Oh my goodness! She loves to splash her little hands in the tub of bubbles. She drowned the baby in the mirror and her bed sheets, but she was happy and having fun. After her bath we dressed her in her pink velour jogging suit with her bunny slippers and a big white bow(I have got to find a pink one!). She then sat up in her bumbo seat and played and played until she was too tired to sit up any longer. By the time the doctors were rounding she was fast asleep on her pillow. She is still napping and I have been admiring the "pinkness" of her skin. I love that God created little girls with rosy pink cheeks and pink lips. It just seems right to me. It is amazing what a new liver will do for the color of your skin.


Dave called this morning to tell me all about my silly kids pulling a fast one on him last night. As he went into Blake's room to tell him goodnight and to pray with him, "Blake" was all cuddled up in a ball under the covers. Dave just leaned over him and started praying. He thanked God for Blake's little sisters and for Blake being such a good big brother. When Dave was finished he then waited and heard a mumbling prayer come out from under the blankets. At the end of the prayer he kissed the lump on the top and turned to leave the room. As he approached the door her heard a voice say, "What about my XMO kisses?" and then it was followed by a lot of giggles. Allie had been hiding in Blake's room, in his bed, and Dad had been none the wiser. He had no idea it was her the whole time. She begged him not to let Blake know and then sent him over to her room to tell "her" good night. So in Dave goes to lean over the lump in Allie's bed and gets ready to begin praying over our "daughter" when all of a sudden from Ashley's nursery Blake comes running up behind Dave and pushes him over the bed to the other side and onto the floor Dave goes. Well you can just imagine the chase that followed. Two giggling kids on the run from one surprised dad. Oh, how I miss being at home in all of that wonderful chaos! I can't wait for Ash and I to return to those guys.

The doctors decided to increase Ash's feeds by another 5ccs. She still has not thrown up although she is very nauseated and gagging. We seem to be making progress. At some point today they will run the Ph probe down her esophagus and into her stomach. It will be attatched to a little box that will register the number of times and what level she is refluxing in a 24 hour period. This will allow us to know for sure if reflux is what is causing her discomfort with feeding her new intestine. I am hoping this will bring us the answers and some new solutions that will help us get on our way home. Other than a little discomfort with her feeds she looks amazing. Her TPN is down to just 15ccs per hour. I am looking forward to getting it turned off soon. Her new organs are functioning beautifully at this point with no indications of rejection. For this I am truly thankful.

I am going to try and have Dave teach me over the phone how to post pictures so I can show you all how good she is looking. I want to share with you the miracle that God is doing in her life. I would also like you to see how precious her little bunnies are with the new haircut and all. Thank you for your presence on this website. It is so encouraging to see that you have taken the time to visit Ashley's story. We can feel Him working in her life because of your faithfullnes to pray. We owe you so much more than just our gratitude. I pray you have blessed day. Trish

Computers do crazy things sometimes. My Y and my T were not working so I took the keyboard off (laptop) and blew the dust out. Put is back on and the Y and T were still gone, but now I was also missing the 4,5,g,h,b,n as well as the y,t. I blew on it some more and bent it back and forth a few times (that is probably gonna work) and plugged it back in. At this point I seem to have all the letters. I don't get how these things work. My screen keeps going out so I have to hook an external monitor to the laptop to see what I am doing. I used to highly recommend the brand of computer I have, but I don't think I will anymore.

I was really getting on not to gripe about my computer, but rather to say this:

One good looking ponytail on one good looking kid this morning.

DAVE

I am no sure how good his is going o work, i would seem ha some of he leers on m keboard have gone kapu. he leer


ABCDEFGHIJKLMNOPQRS ? UVWX ? Z

See some missing le ers? M posing is no working so well.


I will work on he keboard and r again laer. Supid Compuer!!


Dave

Today I came out of my Ashley's room and found myself standing face to face with the reality of the situation we are living in. How I wish I had not chosen to walk over to the desk to see what everyone was working on. As I stood and visited with some of the nurses while they were busy making posters to be hung around the unit for an evaluation tomorrow I began to read. In the beginning I did not recognize what the poster was. Then as I continued to read the names so beautifully drawn on this poster they began to become familiar to me. I did not have to ask what this poster was about. It was reality. It was created in memory of these children. The beautiful names on this poster were names of the children who had come into this unit over the last couple of years but did not make it out. As I stood there face to face with this list the pain in my heart began to swell. This is not what I wanted to think about today. I quickly walked away and told myself over and over again I did not want my Ashley's name to ever appear on that poster.

All day long I have fought an ugly battle that has been raging inside of me. I do not want to go down this path. I want our journey to end differently. I know the reality of my Ashley's situation. I know that transplant is not a cure. I know there are no promises to be made. I know that we have taken a chance, the only chance that we were faced with. I know for every child that does survive there are many, many more who do not. I know all of this, but I also know the reality of the power of the God that I believe in. I know that in all reality if He so chooses to give my Ashley life that there are no statistics that can take it away from her. I know that He brought us here to this center, and I know the He provided organs for her. This too is reality. Tonight I find myself clinging to the knowledge that my God is real and that He is in control of my daughter's life. As I walked away from the poster this morning I so desperately wanted to grab my baby and run out of here. I wanted to run so fast that the reality I saw on that piece of poster board would not be able to catch up with us, but in all "reality" I know that I can not change what He will decide for my Ashley. I can only do my best and I can only ask Him to allow her to live. In the end, in all reality, it is His choice and not mine.

As I lay my head down on the pillow tonight next to one of the 3 most beautiful things that has ever happened to me, I will try not to think about the reality of the statistics. I will instead close my eyes and talk to the Father who holds my Ashley's reality in His hands. I know He holds it gently and with much love, and I trust Him to do what is best for my Ashley. I trust that He loves her more than I can imagine. In all reality any number of days that I am given with my sweet Ashley Kate is a miracle that He has allowed me to be a part of. This is our "reality", and I pray that I never forget that her story is being written by Him and not me.

For Christmas Ash received the most wonderful pair of fuzzy bunny slippers you have ever seen. They are so cute and on the inside of them they are lined with pink satin. They look like they feel really good and she has had them on everyday since she got them. Last night my awnry Ashley decided to color her bunny slippers with red polka dots. How you may ask? Not with crayons or markers, but with blood. Yucky, bright red, bloody, polka dots. As I saw the blood dripping down from one of the ports on her central line I made a dive across the room and heard myself yelling, "Not the bunnies! Save the bunnies!". I know this should not have been my first concern, but Ashley was sitting up and happily "growling" at me so I knew she was ok. After a quick assessment of the situation I decided there was no need to begin grieving the loss of our bunnies. They were fluffy enough that they probably could use a new hair cut anyway. So with the help of a pair of hospital scissors I gave our bunnies a cute new look, and you could never even tell they had once for a brief moment in their lives worn red polka dots. Rest assured that my Ashley was not being neglected while her bunnies made their first( and hopefully their last) appearance at the beauty shop. Her nurse was working on fixing the problems that Ash had created. In the brief span of a whole 2 minutes while I had turned my back on her to wash my hands she had gotten one of her ports into her hands and had successfully disconnected her TPN. As a result there was sticky, smelly TPN and fresh red blood pouring out all over my freshly bathed Ashley(and her bunny slippers). I told you she was awnry and now I know just how fast she can get into trouble. This was just the beginning of our long night that was packed full of "Ashley Antics". Needless to say we did not sleep and she is once again taking a good morning nap. I hope to get our day/night issues resolved very soon.

Morning rounds have ended and we are going to increase Ashley's feeds once again. She is very nauseated with any change in position, but she has not vomitted. This is progress. We have never gone up this high on her feeds without her losing them. I am praying she is learning to adjust to the volume as we slowly move higher and higher on her feeding pump. Other than the change in feeds everything else will stay the same for today. She is still on her treatments for her lung issues( we are so thankful because she sounds very clear right now), and she is still being treated for her staph and mold infections. She has been fever free, and her blood pressure issues have resolved. We still have a long ways to go, but I am feeling very good about the place we are in today. Things are looking good.

I am hoping to get in a little nap before my little pickle awakes. The girls (nurses) on the floor are ordering Applebees for lunch and this makes me smile and think of home. Blake loves to go there on Sundays after church for lunch. I think I will join them and order a plate of nachos. Mmmm, Mmmm good. I just wish that Dave was here to share them with me. Oh, well I will have to manage on my own. Thank you to all who went and enjoyed the concert in honor of Ashley last night. My heart was touched to learn of all who attended. I hope you were blessed by your attendance and I am glad we got to share a little of our Ashley with all of you. Thank you again for caring so much about her. We love you all. Trish

I think it began the day I met Ashley's birth mom for the first time. I don't speak of her often because I hold this part of my Ashley's story in a private place in my heart to be shared only with my beautiful daughter, but tonight I will tell you that I think is the moment when it all became real to me. As I met her that day my heart was forever changed. It melted. In a way like never before. Here I was asking to be allowed to be the recipient of something so very precious that there are no words to describe our first meeting. Ashley had been born 14 days earlier. I had loved my daughter, her daughter, for all 14 of these days. I had cried more tears than could ever be counted as I searched desperately for His perfect will in the life of my Ashley. I spent those 14 days loving this young lady. This beautiful young lady who had given birth to the child that I knew would always be mine inside the secret places of my heart whether or not she ever became mine to hold. It was at the very moment that I saw her on the road that my heart became humble. Not humble as in I was no longer too prideful, but humble in a way that I realized what I had been blessed with in my life. It was at this moment that I saw another human being through the eyes of Christ for the first time. As I looked upon her face, I saw beauty. As I looked into her eyes, I saw beauty. As I looked upon her life, I saw the beauty that should have, that could have been there. Why her and not me? Why didn't she have what I had? Why didn't she have a loving husband, a beautiful home, two precious children, a life blessed with friends and family? What made her any different from me? The only answer I could come up with was grace. I was no more deserving of these things than she. We were not any different outside of grace.

It was this meeting that taught me to be humble, to be grateful, to count my blessings. It was this day on the side of the road that my eyes were opened to all that He had done for me and for her. It took this day in my life for me to not just see the value but to feel the value of His sacrifice. The definition of grace is "un merited favor". Nothing that I had done. Not because He owed it to me. Nothing I could earn. It was there for me because He loved me and all I had to do was accept it. My prayer for this precious person was that she would somehow experience this same grace.

Tonight as I listen to my daughter playing down the hall I am humbled. Humbled first by the grace that the Father bestowes on me. Humbled by the gift of my Ashley. Humbled by the love of my huband. Humbled by the opportunity to mother my Blake and my Allison. Humbled by the generosity of others. Humbled by the friendships that are offered to me. Humbled by this life He has given to me. Humbled to be in this place at this time. Humbled to be a part of my Ashley's Story. Humbled by all the thousands of visitors who have come to her story. Humbled by the willingness of others to love my daughter. Humbled to know Him. Humbled to know that He loves me. Humbled.

Thank you all for what you have done for my family. Thank you Father for this journey you have allowed me to be a part of. Thank you Ashley's birth mom for giving me the gift of a lifetime. All of these things and so much more have humbled me. Good night and may I forever stay humble.

I am so confused! Is it day time or night time or daytime? We are having a hard time figuring it out. Ashley is really switched around right now. She has been asleep since before noon, and when I attempted to wake her up and make her sit up and be inter active it was a disaster. So I laid her down for a moment to get a diaper and when I turned around she was snoring. Snoring! Like a middle of the night sleep kind of snoring. I too slept for about 3 hours this afternoon and although I know I needed it I am now confused as well. Tonight I am afraid will be another long playing session with no slumber.


In and out of my naptime I have tried to help dress the family from 700 miles away for tonight's concert. This is no easy task. Everytime I would come up with a great outfit they would call me and tell me which pieces they could and couldn't find. I finally gave up and I am just praying they show up dressed appropriately with matching items. This is one area of control I am really struggling with.

Other than having our sleep schedule all messed up we have had a very good day. Ash looks really good and I expect her to be full of personality tonight to keep us all entertained. I am sure she won't disappoint. I will be happy to post whatever she decides to pull on us tonight. Thanks for coming to Ashley's story today. We appreciate all of your prayers and support. Trish

This mornings rounds have concluded and it has been decided that although my little Ashley is oh so sweet, might she be a little "spicy" also? On Monday we will run a PH probe down her throat (it has been described to me like an ng feeding tube) and leave it there for 24 hours to test and see what the ph is of the contents she is sending back up. Could this test contain some answers to what we have all been looking for? I really have no idea, but it just made me smile to think that yes my "pickle" is sweet(sometimes) and the last few days her attitude has shown me just how "spicy" she can be too. To think that there may be a medical reason for her attitude just strikes me as funny. I know she will not be too happy with us once the probe is down her throat so I am expecting some pretty "spicy" attitude to be displayed. In addition to this test, we have decided to increase her feeds to 25 today and see what she will do. I am praying she will adjust to the new volume without any signs of discomfort.

At this point in our morning Ashley has finally decided that all of her playing though the night has caused her to be sleepy. She is now napping and I should probably join her. She definitely has her days and nights mixed up and when the lights go out her vocals go UP. If she wasn't so cute we might get irritated with her, but she has a way of keeping us all entertained while she is misbehaving. I really do hope to catch a little nap today so I will be able to "hang" with her tonight.

We will also be going to CT scan early next week to look at the mold spores in her lungs. I am praying that they will be gone and that we can put the idea of this infection behind us. She has responded so well to the treatment that it is hard to imagine that she is actually growing this mold inside of her lungs. She has been without fever for several days now, and she acts like she is feeling better and better each day. I am so thankful to be at the place we are right now. I pray for more and more progress to come our way. God has blessed us so very much and I know that He has big things in store for our Ashley. I am going to go take a little nap along with my daughter and I will post again later this afternoon. Thanks for being here with us as we travel the long road back home. God bless. Trish

Ash is tucked into her crib and finally sleeping after a long day of "growling" and grinning. To hear those sounds coming from such a beautiful little mouth is shocking, but the grin that follows is so sweet. She is very proud of her new vocabulary. It no longer includes the sweet sounding, "My mama", but now it contains the word, "Maaaa!" She keeps everyone well entertained across the hall at the nurses station.

This morning our friend Ginny was feeling better than she has in several days and she asked to see Ashley in one of her bows. Of course Ash can't come out of her room, but we were able to stand at our door way and Ginny could see Ashley(and hear Ashley) from across the hall. I was so happy that Ashley wanted to cooperate and she waved over and over again to Ginny. My heart smiled when I saw Ginny's fingers waving back to us from under the covers. I am so happy that both of these precious girls had a good day. God is really working in the lives of the children up here in Omaha. How thankful I am to know that He loves them, that He feels their hurts, that He listens to the prayers that are sent up on their behalfs, and that He is taking care of them.

Now that Nan has gone back home to help run my household (thank you so very much for all you do!), it is just us girls left here on our own. I love it when the family comes to visit us, but when they all leave it makes our room seem so very empty and lonely. Ashley and I are adjusting to just hanging out with each other once again. I was able to rock that precious baby girl for a very long time this afternoon. I love looking into her face. She truly is a miracle, and I am so blessed to be able to see His power in the life of my daughter. Ash seems to be uncomfortable with her feeds and I am praying that as we slowly increase them she will be able to adjust. If she doesn't then I don't know what options we will be left with. I try not to fear what may happen. I am just believing that this time it is going to work. I would love to take her out of this hospital to our little apartment and start looking towards the day of our homecoming. What a celebration that will be in our family.

Tomorrow begins another weekend and although the slower pace is sometimes appreciated around here it makes me miss being at home with Blake and Allie. How I long to be back at the ballpark with Blake or at a competition with Allie. To be able to attend church again with all of our friends would be such a blessing to me. I know that this time in our lives is here for a purpose, but I am still looking forward to taking our sweet Ashley Kate back home where she belongs. In our house, in her nursery, with our family. It all seems like a dream and sometimes I wonder if it will come true, then I remind myself that the Father is working in the lives of my family and He will take us home when His plan for us here in Omaha is complete. There was a day in my life when I only dreamed of holding this precious baby and now here I am actually doing it. He knows the desire of my heart and in His time it will happen. I just know it.

I wish Ash and I could be at tomorrow's concert in person to say thank you to everyone for all they do for us. Since we can't be there I would just like to let all of the volunteers, performers, planners, and ticket buyers know that your love and concern for our daughter has touched my heart. You are appreciated, and I am praying His blessings on all of you. Thank you for caring about our tiny "pickle". We look forward to the day that we bring her home and you all have a chance to see what a difference you made. Good night from "just us girls" and God Bless. Trish

One of the biggest things I have learned through my Ashley's story is that no matter where they come from people are just people. We are all the same when it comes down to it regardless of our backgrounds. We were all created with a heart that hurts, a heart that hopes, a heart that loves, and a soul that is eternal.

As I watch family after family say good bye to their tiniest members in the halls of this PICU, I have learned that no matter what the circumstance that brought their loss about it hurts just the same. As parents we desperately try to protect our children from harm, and we would all give our own lives to take the pain and discomfort and fear away from our little ones. How I wish it were only posssible. I would gladly trade places with my Ashley to spare her all that she has endured, and I know that I am not the only parent in this place that would make the same decision if only it were allowed. I know that God Himself gave this instinct to us. The instinct to want to protect them from anything that would cause them pain.

I will never understand why so many of our little friends here in Omaha have had to die, but I know that God is the one who awaits them as they enter into eternity. I was reading a book the week before Christmas and one of the lines inside of it said, "that God doesn't take people from us, but He receives them for us." How comforting a thought to know that the Creator of all things is there waiting to pick up these precious children as they enter into His heaven. I know it doesn't make the pain of losing these children go away, but it does comfort my heart to know that He loves them so very much and He is there to hold them for the mommies that can no longer.

So as I remember our tiny donor, our friend Jeremiah, our friend Connor, our friend Chloe, our friend Zachary, our friend Kilee, the young man who I never met but breathed his last breath next door to our room, and the precious 2 year old baby boy who will leave this place today, I am giving thanks to the One who gave them life for the impact they have each one had on my heart. I loved them from a distance. I prayed for them from a distance. I hugged the necks of some of their parents. I still pray for their families that have been left behind, and I will never be the same for knowing them in this place.

The pictures from our scope look beautiful and Ashley is now sleeping in her crib. We will find out the cellular results tomorrow. Thank you so much for remembering to pray for her today. Without your support I know this time in our lives would be much more difficult. You are making such a difference. Thank you Sue for feeding my husband! I know he appreciated the food, but more importantly the friendship. You are a treasure and Ash and I miss you. Take care and may God bless you all today. Trish

Well this morning we have come to a halt on Ashley's feeds. We have decided to take it slow and not increase her for a couple of days. She made it up to 20ccs before we started having problems. Over night Ashley's ostomy output doubled. We had only increased her feedings by 5ccs yesterday, so this is an indicator that tells us we must be cautious. They have scheduled a scope and a biopsy of her new intestine to check the cells for rejection. It will be a t 1:30 this afternoon. In the past we have always had good news return to us from her biopsy's of the new organs. Today I am praying for the same. Everyone agrees that with Ashley we must be cautious and take a look at everything. She looks better this week then she ever has, and we don't want to jeopardize her progress by overlooking something. It is better to do this today rather than waiting until Monday and risking something happening over the weekend. I would say that this is just a routine biopsy, but at 3+ months post we should not be having to have them. I guess I just get nervous and my heart beat increases anytime they even mention that dreaded word "rejection". Please join us in praying for good results to return.

Thank you for praying for Dave. I have spoken to him twice this morning and he already sounds better. He is an amazing person who trusts God with everything. He has never struggled with stress before. He has always been able to pray about things and allow God to do the rest. To hear him sound so down last night was difficult for me. He is the most optimistic, up beat, happy go lucky, take it as it comes kind of guy. I know he was tired and overwhelmed, and I appreciate the time you spent in prayer for him. It means so very much to me. I did find out that he failed to feed the children breakfast yesterday AND today, so let me apologize to their teachers if they are slow, sluggish, and not very smart today. Dave can't wait for Nan to get home. He told me he was going to hug her neck and tell her she is not allowed to leave again. Its just too much to run the buisiness, the home, and the kids schedules. He desperately needs her help!

Nan is leaving at 1:30 for the airport and Dave is driving into Dallas to pick her up tonight. I pray they will have safe travel. Ash and I will be on our own once again. We are so looking forward to the plans that the Father has for us. I know He has good things in store. Thank you for loving us today, and for following Ashley's Story. I will post about the scopes this afternoon. Take care and have a wonderful day. Trish

Tonight as I have sat and played with my Ashley I giggled to myself as I thought of all the funny little things that only I know about her. Things that wouldn't matter to anyone else but me and Ashley. When I really think about it there are things about all 3 of my children that only I hold deep in my heart. I guess its just something that God gives to moms. What a treasure!

Things like ...

I' m going to change my posting tonight in mid thought. Dave just called and with tears in his voice asked me to please pray for him tonight. This is unusual. It really concerns me to hear him this way. I asked him what was wrong and he just said he was tired, stressed out(which he never is), hungry(because he was so busy tonight he forgot to eat, I wonder if the kids did?), and had a lot more work to still do tonight. To be honest with you, we have taken a lot of frustration out on each other over the phone today. I don't think we have had even one conversation that ended well. This makes me sad. It really isn't like us to be on opposite sides. I think it was just easier to be grumpy to each other rather than take out our stresses on anyone else. This is not an easy journey we are on. I am not complaining, just sharing that sometimes things that should get done in our "real world" responsibilities fail to actually happen. This can cause a strain on us and instead of working it out together today, we just didn't see eye to eye. Now my heart is heavy because I know he is at home trying to figure out how to make everything work all by himself. In all actuality he does a fabulous job. When Ash became so sick 2 weeks ago Dave left the office in a hurry. This week he has to fix all the things he left undone. Its just part of what we do right now and it really is going to be o.k. He just sounds so sad tonight, and I hate it that he is there doing it all alone. My job is easy compared to his. I sit and hold Ashley, rock Ashley, play with Ashley, sing to Ashley, and pray for Ashley. His job involves so much more.

So tonight I will ask you all to please pray for my husband. He is an amazing man. He is a talented doctor who loves his patients. He is a fabulous father who would do anything for his kids. He is a terrific husband, and he is my best friend(even if I didn't act like it today). I know he needs an extra dose of strength and wisdom right now to help us get through to other side. Thank you for praying for my family. I know you came to this site to read about our Ashley, but I also know so many of you pray for all of us on a daily basis. Your support and your concern really do gives us strength. I appreciate you all so very much. Thank you for caring. Trish


P.S.

I'm sorry Dave. Just take it all one piece at a time, one moment at a time. I love you and I appreciate all you are doing for our family. Please forgive me for being so difficult and grumpy today.

I just came back from running a couple of errands (like having all of the salt washed off of the car. I guess this is the downside of our New Years Eve Snow). As I was driving back to the hospital I looked to my right down one of the neighborhoods and saw something that made my heart smile. There were 3 little girls stair stepped in height all skipping in a "straight" line down the sidewalk. How precious a sight! I could only smile in anticipation of my sweet Ashley Kate one day skipping down our sidewalk. I am looking forward to the day she learns to walk. I am looking forward to the day she learns to skip, carefree with not a worry or concern on her little heart. Oh, how I can't wait! I am looking forward to watching her grow up and seeing her become a little girl.

Ash has spent the afternoon laughing, smiling, playing, dancing, and "hopping in her boppy". She loves it when I hop around the room acting like a bunny. She does her little "hopping" at the same time. She wants to be mobile. You can see it in her eyes. She is getting stronger and stronger this week, so I don't think it will be too long until she builds enough strength to learn. When I came in the room this afternoon she was sitting up and she reached out for me and said, "Mama" for the first time in over a month. My heart was so blessed to hear her scratchy little voice. She is now napping and re-energizing herself for another round with Nan and the nurses tonight. She is too much fun.

If only you could see the difference in my Ashley from last week to this week your heart would be so encouraged. She is fighting off the infections and she looks better every day. God has brought her through another tough time and each time He does His grace brings me to my knees. I am more than humbled to be in the position that I am in. He has allowed me to watch miracle after miracle in the life of my daughter. I don't know why He chose me to love this little one, but I will forever be grateful.

We finally have negative blood cultures! Yeah, for Ash! How blessed we feel with this news. So from today we start counting the duration of her treatment to clear the infections. She looks fabulous! She is sitting up and being as awnry as ever. The transplant coordinator just walked past me and said, "Your daughter looks precocious!" I hope that means good. As soon as I walked into her room this morning she burst out into the most beautiful smile you have ever seen. I think she feels really good today.

If we could just get her feeds up to 55cc an hour then we are moving out of this place. Barring any new infections which would cause us complications. Right now we are praying she stays infection free. This morning we did increase her feeds to 20cc an hour and reduced her TPN to 23ccs an hour. We also increased the formula from 15 calories to 18. These are all positive steps in the right direction. Please join us in praying that she will not vomit. We need her to adjust to a full tummy (actually intestine) and grow and grow and grow. She is 17 months old today and she weighs 16lbs, but let me assure that all 16 pounds are full of trouble.

Today is the last day that Nan will be here helping us. It has been such a blessing to have her here. I have been able to do laundry, go to the store, pick up dinner(outside of the cafeteria), and sleep in a real bed. Tomorrow I will go back to living in the family room, showering in the public shower, and sleeping in our chair. Hopefully it won't be too much longer until we are on our way to our apartment.

I have a very difficult prayer request. The family of the 2 year old trauma patient is saying their good byes today. It is such a difficult time for these precious people. Please keep them in your prayers today and in the days to come. They have other small children and I can't imagine how difficult it is to take your children in one by one and have them say good-bye to their baby brother. My heart is broken for the pain they are going through. I would really appreciate any time you could spend in prayer for them. They desperately need comfort at this difficult time in their lives.

Thank you checking in on Ash this morning. Your presence here touches my heart. I pray you all have a wonderful day, and that you feel His presence in your lives. Trish

Another day is winding down for us here in the PICU, but is it really? Not if you were to ask my Ashley. She has just gotten up from her 3 hour nap and she is winding up NOT down for the night. This little one has her days and nights a little confused. She is dressed all snuggly in her jammies and her vitals have been taken, her meds have been given, she has been lotioned up and loved on, and she should be ready to lay back and enjoy a good episode of her favorite Blues Clues video. Instead she has decided to once again act like a pirate! She is growling for everyone's entertainment this evening. The more people who show up at our door, the more she growls and giggles and growls and giggles. I tried to tell them not to encourage this unlady like behavior, but they all think it is great. Poor nan will be "forced" to play with this baby all night long. Again! It has been so wonderful to be able to go to the apartment at night and sleep in a bed. Only 2 more nights until I take residence back up in my "favorite" blue chair next to my Ashley's bed. Night before last Ashley earned her crib again, and guess who showed up to play with her? Her favorite friend, the baby in the mirror. You should have heard the conversation (that consisted of growling) they had. At least she is friendly, I'm going to be thankful for that.

At home the kids and Dave are trying to prepare everything for the start of school in the morning. Poor Dave is so very tired after trying to pick up the pieces at the office today. When I talked to him he still had to give Blake a hair cut, make sure the backpacks were ready, prepare a snack, get Allie's hair dried after her shower, iron uniforms, tuck them into bed, and then try to get himself ready to go back into the office. If you looked through the window at our house tonight you might mistake him for me! One of the things we have learned through this journey is to truly appreciate the role the other one plays within our family. I can't be him and do all that he does, and he can't really figure out how to be me and do all that I do. Without nan at home helping I am afraid he might be a little overwhelmed.

Today has been a good day in our little piece of the PICU. Ash is looking better than she has in a very long time. We have turned off her oxygen support, but we have left the nasal cannula taped to her face just in case. She seems to think she needs it taped there in order to keep breathing. Silly girl, her pictures would be much cuter without it! Tomorrow I am going to be brave and take it off her face while she is napping. Hopefully she won't even notice it is gone. We are still battling the staph infections and the mold that is growing in her lungs. I am not sure how long we will be treating it. There seemed to be a question as to how long she would require treatment for that one. I am praying that as these current infections clear we will stay free from any more. I have a peace about us getting out this time. I don't know why I feel this way. I am just feeling hopeful tonight.

Again God has been good to us. He continues to bless us with more and more time with our Ashley Kate. We are so thankful that He allowed us to be her parents. Although I would wish that my daughter could live a long and healthy life, there is not one minute of this time I have spent with her that I would change. I love her tiny little self. She may never grow up to be a "big" kid, but she has already changed the hearts of so many. Mine included. The people I have met along the way, the children I have grown to love, the time that I have spent with the Father, all of these things have been gifts to me because of who she was born to be. For all of this I am truly thankful. Good night, because I myself am winding down, and may God bless you tonight as you rest. Take care. Trish

This has been such a tough week here in the PICU. I am asking you all to please pray for a family who is losing their 2 year old. They are struggling with some very tough decisions and our hearts are hurting for them. They came in on Sunday evening as a trauma and things don't look very good. I spoke with the dad a few minutes ago and told him we would all be praying for their family. He told me he feels like he should be praying for the other children here not just his. I let him know that we all understand that this is a tough place to be in and I just wanted them to know that they are loved and prayed for. I don't think they will be going home with their little one. From all indications he is already gone and they will have to decide when to let him go. Their hearts are broken and they are hurting. Please, please pray for peace for this young family.

Across the hall from our room is Ginny. I have asked you all to pray for her on several occasions before. Today she is hurting and in pain and my heart aches to go in and hold her hand. I met her aunt yesterday and shared with her how I would be willing to do anything for Ginny that could make her days better. I would love to read to her, talk to her, listen to music with her. Anything during the hours that her family is at work and she is here alone. Her aunt gave me the biggest hug and told me she would let the family know. I pray that God will use me and allow me to love this beautiful young girl. Please remember to pray for her too.

Ash is starting to show signs of being uncomfortable with her tube feedings. I am trying to shake off the fears that we are going to start repeating the past. I want so badly for her to be able to eat so we can move on to our apartment. She is starting to scream and act nauseated. She actually had audible hiccups this morning. I can tell she is beginning to struggle. She has not vomitted any of them yet and I am so thankful for that. Maybe it will just take a few days of adjusting before she becomes comfortable. Please remember to pray for her feeding issues.

Thank you all for your faithfullness to pray for our Ashley and her friends. You will never know the impact it has had on us. We value your friendships and your willingness to care for children who you have never even met.

P.S.

I think the T.V. station is channel 7 that is airing the interview tonight. Thanks for wanting to watch. I really appreciate it.

Sorry for the late posting this morning. Time has really slipped by. I usually like to type my morning posts after rounds are made so when they are running late then I am running late.

This morning I spent my time rocking a bundle of baby girl. As I rocked my sweet baby, Ashley rocked her sweet baby too (minus the hair bow! she just doen't get it yet). I am trying to teach her how to quietly say,"ohhh" as she rocks, but she just likes to say, "AAAAAAAHHHHHH". I told her the baby will never go to sleep like that but she just shakes her head at me and says , "AAAAAAHHHHHH". She sounds more like a pirate then she does a "Mommy". With all of her growling this morning she has attracted quite an audience. Everyone is stopping by to see what she is growling about. The funny thing is that when you hear the noise she is making you would never guess it could come out of this tiny little person. She sounds absolutely awful, but she doesn't care about acting like a little lady(although I am determined to make one out of her). She likes sounding like a pirate. Boy, do I have my work cut out for me. I am just going to be thankful that she is feeling good enough to play, and laugh, and GROWL at her babies while acting like a pirate.

Last night I began praying that God would please bless the upcoming concert in the way He thought best. This morning I included this request in my prayers also. A couple of hours ago I received a phone call telling me that the television crew would be at our house (about now) conducting an interview and getting some shots of photographs of Ashley. What? I said. I haven't been home in 13 weeks. Is someone crazy for agreeing to this? My house is surely a disaster. The children are surely filthy. The lawn isn't done and the walk probably has not been swept since I left the morning of Ashley's transplant. There is no way I would ever let anyone stop by with it looking like it must and especially not a T.V. crew. As I began to go into a complete panic, something struck me as funny. Can you believe this is still happening to me? Here I go again trying to act like I am in control of this life I am living. When in all actuality God has just answered the very prayer I found myself praying last night and this morning. He just caught me off gaurd because He acted so fast. This is actually a good thing. Even though things will not look the way I would like them to on the news tonight, the concert is going to receive some really great coverage. This is great! More people will know it is coming up this weekend and maybe they will go and recieve a blessing from attending it. God is working in my life all of the time, even when I fail to "see the answer" to my prayers. So in advance, let me just ask you all to please forgive me for my "UNTIDY" home and please don't judge me too harshly if it all looks like a disaster. Just know that I am trying to learn how to live this life without trying to control it. I have figured out that there is NO way I can clean my house while living 700 miles away from it. At least our nurses are getting a good laugh out of all of this at my expense.

So today God is still teaching me life lessons through my Ashley's Story. Maybe next time when I get called and told there are going to be people from all over viewing the scattered contents inside of my home I will pause and whisper, "Thank you Father for hearing my prayer and answering in this amazing way." Honestly, I am just a work in progress and I have such a long way to go. Thanks for loving us today. I hope(?) you get the chance to catch the evening news tonight and see just how much God is working in our lives. Have a great day and God Bless. Trish

Tonight my heart is heavy as I remember the image of Zachary's parents walking to their car early this morning. It reminds me of the other families I have watched leave this place walking on that very path. Not only does my heart break for their loss and for their empty arms, but my heart is scared. Scared that some day that could be us. Walking out of these halls without my sweet Ashley in my arms. With each passing day I am learning the value of life. Each moment I am given with my children is precious. Transplant is not a promise of life, it is merely a chance at a life. Without it my daughter would not have one at all. The gift of life that was given to her by our donor family and ultimately by the Father is not a gaurantee. I would be lying to you and to myself if I told you that I believed my sweet Ashley is going to live a long life. What I can tell you is that I hope to make the life she is given as wonderful and precious and memorable as I possibly can.

There are so many things I hope for my Ashley and things that I dream of doing with her. More than anything I hope for Ash to have joy. The kind of joy that does not fade. The joy that comes from loving God and from knowing how much He loves her. I hope for Ashley to feel the ocean at her feet one day. I hope for Ashley to lay in the grass next to me and pick out pictures in the cloudy sky above. I hope for Ashley to feel the warm summer breeze against her cheeks. I hope for Ashley to watch the leaves dance across the lawn in the autumn air. I hope for Ashley to catch snowflakes on her tongue. I hope for Ashley to one day learn to walk and run and "jumpa, jumpa, jumpa" with her precious friend Daisy. I hope for Ashley to climb upon her Daddy's lap and smell his cologne as she drifts off to sleep. I hope for Ashley to watch her brother play baseball at the ballpark again. I hope for Ashley to lay in her bed at night and tell secrets with her sister in the room that they share. I hope for Ashley to run down the aisle at the store and pick up crayons, and scissors, and lunch boxes, and backpacks for her first day of school. I hope for Ashley to learn her first Bible verse and proudly tell it for all to hear. I hope for Ashley to grow up and fall in love with the man of her dreams. I hope for Ashley to have a blessed life. I hope for Ashley to know Jesus. I hope for Ashley to love life itself. I hope for Ashley to know what a gift her life is. I hope for Ashley.

I want to make the most of it. I never want to take one minute of her life or Blake's or Allison's for granted. I want to soak it all in and never forget one moment of it. Talking to my sister today she told me how her oldest son (who is 21) came home yesterday and spent the afternoon watching the football game with his dad. How precious it was to have him there. For him to come home willingly and want to spend time with them. It meant the world to her and it meant the world to me for her to have those few moments with this young man that she raised. Oh, how she loves him, and what good friends they once were. I realized that just as my nephew did, my children will and are growing up. Our time with them in our homes is fleeting. They will not always be little. The day will come when they will not be down the hall from us. I want to hold them as much as I can while I still can.

I guess what I am trying to say is that I have learned through my precious daughter's life that taking the time to "make the most of it" is worth it. I don't know how long I will be a mommy, but I do know that I love this job. I want to do it well. I want them (my 3 children) to someday look back on their childhood and smile knowing that their mom loved them more than anything. I want to "make the most of it." Trish

Oh my goodness I have just wrestled a princess for the last hour and a half. She may be tiny, but boy is she strong. I am worn out! She finally realized that she was going to lose this battle and went to sleep. Now let me just remind you that I have an 8 year old daughter at home, and because of this I am an expert at making little girls look, smell, and act like little girls whether they like it or not. If you were to walk into Ashley's room tonight, I would beg you not to wake the sleeping "giant", but you would see the most beautiful little princess all tucked in on her princess pillow. Her nurse (his name is Jeff) just came in and said it even smells "pink" in there! I loved that statement.

Ash has had 2 line dressing changes (the new and the old), 2 ostomy changes (the first one didn't want to stick), a bath, a shampoo, a massage (with girly smelling lotions), and she is now sleeping in her new pink ballerina dress while wearing fuzzy bunny slippers. All she lacks is the bow, but we have already fought that battle this morning and I felt sorry for her and let her think she won.

Now that she has growled and grumbled at me the whole time while wearing the sweetest little grin you have ever seen, I too need a nap. Instead I am off to run a couple of errands while Nan sits with the "giant" and watches her sleep. I am leaving strict instructions to stand gaurd at the door of the castle with sword in hand so that no one dares to enter and risks waking up our princess.

All in all we have had a wonderful day. She looks better and I think she feels better than she has in a very long time. How thankful I am that she has the energy to fight against her necessary beauty rituals. If I left it up to her she would stay stinky and dirty and not even be recognizable as the princess that we all know she is destined to be. Its tough being a girl and when you add the title of "Princess" to that it gets even tougher. I am so glad I get to be her mommy!

This morning on my way into the hospital I ran into a very precious family whose son had been battling rejection the last couple of weeks. Just the fact that I saw them walking to their car told me that precious Zack had lost his battle. My heart is broken for them. He was a beautiful child. As I left the hospital last night to go to the apartment I spent the drive praying for him and a couple of other children here. He was only four years old and we have spent the holiday getting to know his family. They were wonderful, loving parents who only wanted the best for their son. I can't imagine the grief they must be experiencing. They too live in Texas and they will have a very difficult journey home. Please, please pray for them. I will never forget their son and how brave he was. Zach had his transplant for 3 years and his dad shared with us that they were wonderful years.

It seems so unfair that on Ashley's good days there others who are having bad ones. I almost feel guilty when she is feeling good because so many of our friends here are not. Let me just share with you how good God has been to us this morning. Ash is feeling awnry and she is showing off her stuff. During rounds this morning she was waving and dancing with her doctors. She loves music of any kind, and to see her dance in some scary way looks alot like her dads, but I am thankful that they have a song in their hearts and a desire to express it. After playing for several hours she began to get grumpy and started "growling" at me. Silly girl, all it does is make me smile to see her feeling so awnry. How thankful I am to be at the place where we are today. Life is so fragile and I am determined to enjoy every minute of my sweet Ashley. As I laid her down for her nap she "ripped" off her bow and started reaching and grunting for her new baby she got for Christmas. I handed it to her and she then proceeded to rip the bow off her baby's head too and then in literally 2 minutes they were both fast asleep. Oh, how I love this little girl.

We are on our way to CT scan to look once again at her chest. We are still trying to determine if she has a mold infection as well as the staph. She seems to be responding very well to the antibiotics and we have increased her tube feeds to 10ccs. Please join us in praying that she will tolerate them. We are hoping to make progress and to move out to our apartment before she picks up anymore infections or viruses.

Thank you so much for praying for my family. It means the world to me to know that we have such a tremendous support system. Thank you to all of our volunteers who are working hard on Ashley's behalf. I so appreciate all you do for her. We are looking forward to the upcoming concert and praying God will bless it. We love you all. Trish

I just talked to Dave and the kids. They have finally made the long journey home and they are preparing for bed. Dave is exhausted because unlike the children(who had long, long naps throughout the day) he is running on the 3 hours of sleep he got last night. Traveling all day is even harder on you when you haven't slept. He is anxiously waiting on them to finish brushing their teeth so he can tuck them into their beds and then go climb into ours. How I wish Ash and I were there with them. I always feel a sense of lonliness while we are here, but it is magnified a thousand fold on the first night after our family visits come to an end. Someday soon I pray that it will be in God's plan to allow all of us to lay our heads down on our pillows in our own home together.

Our visit could not have ended any better. Last night was magical. As I sat in the car and watched my husband play with the children in the snow all I could do was say Thank you over and over and over again. My heart was so full of joy as I listened to them giggle and laugh and play in the middle of the night. It was 26 degrees and it was freezing, but no one seemed to care. A little after 1:ooa.m. the kids began to load there jackets and boots into the back of the Explorer. As they were preparing to leave, I jumped out of the car and grabbed a sled and began to run up the hill as fast as I could. Blake looked up and saw me making my way up the hill and started hollering for Allie to grab the other sled. They were so excited to see me ready to go. I was freezing, but boy was it fun. The memories we made together New Years Eve 2006 will last forever in our hearts. I wouldn't trade last night for anything in the world. It was a perfect end to a year and a perfect beginning of another. As I watched Blake and Allison lay in the snow and make snow angels I pictured a tinier version next to them. I tried to imagine how wonderful it would be to see my sweet Ashley making her very first snow angel. I can't wait for the day that she will be out there tromping up the hill hand in hand with her daddy ready to "sleigh" down (as Allie says).

Nan has agreed to stay with Ash and I until Friday. How thankful I am to have her here with us. It makes it a little easier than having everybody leave on the same day. She is going to sit with Ash tonight and I am going to go back to the apartment and do some laundry. I dread walking into an empty place without Dave, Blake, Allie and Ashley at my side. How lonely it will seem without the kids there. Ash looks so good today. God has blessed us. I think she is feeling better and better, and I can tell the infection is leaving her little body. All of the numbers on her monitor are stable and beautiful ( It has been so very long since I could say that). I feel encouraged by the progress she has made over the last 2 days. Thank you for your continued prayers for our Ashley. I think He has big things in store for us this year, and I am looking forward to living it. Good night guys and may God bless you and your families as we all start this new year together. Trish

Well Dave and the kids are finally on their way home and I FINALLY found my way back to the hospital(2 hours later). I cried and cried this time not because they were leaving, but because I was lost. I mean not just a little bit lost, but a lot LOST. I spent my afternoon crying, panicking, and praying. I saw parts of Omaha that I had no desire to ever see. Somehow I mananged to choose the wrong turn (Dave assured me there was only one) and I ended up on a highway that allowed me to drive around the outside of Omaha. I could see the city, but I had no idea how to find my way back in. Lets just say that by the grace of God, I eventually drove until I literally just ended up here. Don't ask me how it happened because I have no idea. Please explain to me how they can call me to ask where a t-shirt or a missing shoe has been hiding when I haven't been home in 3months and from 700 miles away I can find it, but I can't seem to get myself from point A to point B? When I ask Dave how he knows the way to places around Omaha or any where else his answer is the same as it always has been, "I just know things." Well lucky for him he also knows the number to the airport shuttle service because he will be using it next time!

Any way now that I am back at the hospital with Ashley and my heart beat has finally returned to a normal rhythm, I thought that I would like to take a little nap. (Our midnight sledding adventure didn't leave much time for sleep, but oh was it ever worth it! I will remember it forever.) Ashley doesn't appreciate the fact that her mommy is sleepy so she has decided to shake her Tic Tacs with more energy and more passion than I have seen in her in 3 months. I have given up on the idea of taking a nap and have instead enjoyed watching her show off her stuff. She is yelling, "MAAA" at the top of her lungs just to get me to look up at her and tell her what a wonderful job she is doing with those silly things. God has given her a wonderful day. The line placement was very smooth, and she is feeling very awnry. Her Aunt Kathy would be so proud. All of Ash's numbers look great. She looks great, and her lungs sound great. They have reduced her oxygen to 1/2 a liter. I am so thankful for the wisdom her surgeon used in deciding to pull the line. The sticks and pokes were a nightmare, but the line has grown back a positive staff culture. Her recurring infections were coming from this source. We are still going to CT scan this week to look at the possible mold that is growing in her lungs. We are praying it is nothing and that it has disappeared. She seems to be responding to her antibiotics, but we need to make sure she doesn't have this mold infection brewing also.

Blake and Allison are excited to get back to school to see all of their friends, but watching them say good bye to their baby sister was one of the most difficult things I have ever seen. They each had private moments with her this morning and they both cried tears of saddness when they realized it was time for them to go. How precious it is to watch them express the love that they have for one another. Ashley is already missing them. I gave her the picture she loves to hold of them and she began waving and growling at them. "Where are they?", I asked her and she replies by shaking her head "NO, NO." I found myself looking at the calendar wondering when they will be able to come back. I hope it won't be too long.

I am excited to "wait and see what the Lord will do" in our lives this year. Today we are starting the year with a new central line and a new hope of getting our Ashley home. We began feeding her at 5 ccs an hour today and I will be praying our "specific" prayer list for her every day. Although my heart is sad when I look around the room and realize that Dave, Blake and Allie are now gone, I can't help but be so very thankful for the last 2 weeks that God allowed us to spend together. A few of those days we were dangerously close to losing our Ashley Kate, but He showed us that He is still in control and He allowed us to keep her with us. He also sprinkled some wonderful days in between the tough ones and gave us all memories that we will never forget. Our first Christmas in Omaha was a blessed one, and we hope to be back home in Texas celebrating the season next year. Thanks for checking in our little one. We appreciate each of you. Take care and Happy New year. Trish