Another Day is Done

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

Aaaarrrrrrrrggggg....

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

A Special Gift

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.

My Inspiration

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

Tough Questions

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.

Mary Poppins

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.

Belly Laughs

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.

Lights out!

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

Needing to be in Two Places

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

Brief Explanation of BUN

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

Not mine, but His

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!

No Diaper

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

Tiny Kisses

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.

Trish needs our prayers

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 Grateful Heart

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

Sweet Moments

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

I Can't do It.

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.

She Doesn't Even Know

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

A new day

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

Losing

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!!!"

She is an amazing woman.

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

My Heart Sings!

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

Waiting for Her Smile

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

URGENT PRAYER REQUESTS

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

Mother, May I?

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

Crying

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

Making A Difference

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

Struggling to Keep her Crown

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.

Wet Diapers!

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

A Mothers Heart

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.

Finding Small Blessings

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.

How Could I Ask For More?

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

I think I'm Jealous

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