Well the count down is on for us here in Omaha, NE. The kids has so much fun sledding today that their "dad" aka "the biggest kid I have" has made a promise to let them SLED into the new year. Is he crazy? The answer to that question is YES!!! Blake is so excited he can't stand it. Only 1 hour and 45 minutes to go. At exactly 12:01 a.m. we will be freezing our tails off, flying down the snowy hill on a piece of plastic, giggling and squeeling uncontrollably, and making a memory in the hearts of our 2 oldest children that I pray will last a lifetime. I really love our life!

When I think back over the past year my heart floods with memories that bring me to my knees and fill my eyes with tears. God has really been working in our lives. The year started for us with great hopes that we would soon bring our tiny Ashley Kate home for the very first time. What an amazing feeling it was to buckle that sweet baby into her car seat on January 20, 2006. As I pulled into our drive way I cried tears of joy knowing that she was finally home where she belonged. The next few months were full of hope as we started working with a new team of doctors to try and get our little one to grow. As we approached the month of April it was finally time to realize that our Ashley's liver disease was advancing to the point that we were facing the idea of transplant. On May 1, 2006 I turned 32 and was told by a team of doctors in Houston that in their opinion my daughter had 3 to 6 months to live. I will never forget the flood of emotions I experienced that day. My heart ached like never before and my eyes burned with tears. I don't know if there is a word that can describe what it feels like to know that your child is going to die. On Memorial Day weekend we took our Ashley before our church family for the first time in her life. As we held her in front of the body of Christ our Pastor dedicated our child and her life to the Lord. We came honestly and boldly before the throne of God and willingly gave her back to Him. That morning as I sat and wrote the first page of Ashley's story for Pastor Tom to read to our congregation I realized that I would not walk this road alone. For the first time in my life the sacrifice that God the Father made for me as He too watched His child die became real. I knew that I had a Father in Heaven who knew exactly what it felt like to lose a child. I also realized on that day that my church family would not allow David and I to go through this with Ashley on our own. They were standing with us, loving us, supporting us, and praying for us. On June 7, 2006 we stood before the judge and celebrated "Gotcha Day". Ashley Kathrine Adams was officially ours not only in our hearts but now in the eyes of the law. There are no words appropriate to describe how good it felt to know that she would never be without us. We were her family. We were her parents. We were blessed. On August 4, 2006 my sweet Ashley celebrated her 1st birthday. It was such a sweet moment in our family. We had been given 365 days to love this little girl and our hearts were full of thanksgiving. On August 20, we boarded a plane with our youngest daughter and left our Blake and Allison back home in Texas alone without us for the first time in their lives. David, Ashley and I came to Omaha for her transplant evalutation. After 3 weeks of being apart from Blake and Allie, I finally came home with Ash. She was listed on the National Transplant Registry and now all we could do was wait. Over the next 20 days we watched her laugh, we watched her grow, we watched her play, we watched her grow tired, we watched her begin to slip away. Each night my heart and my burden for my Ashley grew heavier and heavier. Doubt and fear began to slip into my mind. Each night I dreaded for sleep to come because of the nightmares that were sure to follow. I would walk from room to room watching my 3 children sleep and beg God for the chance to have them all live. On Sept. 26, 2006 we got "the" call. UNBELIEVABLE! It had only been 20 days since her listing and God had provided. I can't tell you what I felt that morning as I ran from room to room trying to pack the 5 of us as quickly as I could. I thanked God for His provision and I begged Him to please, please not let this be my last day as her Mommy. I loved her. I needed her. I couldn't let go of her. That night we handed our daughter, our precious gift from the Father, the child we prayed for, to the surgeon and watched her be carried away from us. We had no idea if we would ever hold her again. At that moment I learned to trust the God of the universe. The next 3 months I have spent sharing her story(our story) with the world through Ashley's Journal. There have been hard days. There have been scary moments. There have been sleepless nights. There have been celebrations. There have been heartaches. There have been moments of praise. There have been realizations of just how BIG our God is. There have been memories made.

As I sit here tonight and watch this year end all I can say to you is that I know that God is real. I know that He loves me. I know that He loves my Ashley. I know that He loves you. I know that He will be with us tomorrow as we allow her to go back to the OR. I know that He has a plan for her life. I choose to approach tomorrow with the hope that He has given me. We will walk into this new year as a family of 5. We will walk into this new year with all of you. We will walk into this new year ready to see what He will do in her life and in ours. Thank you for sharing your time with us. Thank you for walking along side of us. Thank you for crying with us. Thank you for celebrating with us. Thank you for loving us. May God bless you and Happy New Year. Trish

Well it is almost 5:00 and I have not seen Dave or the kids yet. They have been at Memorial Park sledding all day. I just talked to them and they are so thrilled! This was the best blessing ever. I am so thankful they were able to see the snow before leaving for home. Allie brought me a snow measuring stick when she arrived here two weeks ago. She proudly with the faith of a child stuck it in the ground outside our patio at the apartment. She wanted to know exactly how much snow would be falling while she was here visiting. I was so afraid she would have to leave disappointed, but God knew the surprise he had in store for her. This morning as she went outside she asked, "Daddy, how do you make a snowball?" We really do have to take them to see snow a little more often. I am afraid that we may be the only people in Omaha who are actually celebrating the snow. All of the people we have talked to about it are not as happy as we are to see it arrive. It seems to have made several people grumpy, but not us. We are just feeling blessed!

Ashley looks really good today. She has spent most of the day sleeping, but we have been fever free for over 24 hours now. She has a tight grip on her Tic Tacs and she won't let go of them even in her sleep. She makes me laugh. I can tell when she is really relaxed and sleeping good by the sound of the Tic Tacs shifting in the box.

The halls of the PICU are full once again. Most of the patients are very, very sick. My heart is broken as I learn of all their stories. Next door to us there is a seven year old little boy fighting cancer. He is such a beautiful child. Oh how I hurt for his parents and grandparents. Down the hall from us is a transplant patient who is 3 years post. 13 days ago he went into rejection and he is trying to battle back. He is only 4 years old and he is an only child. His parents are also from Texas and they have the same team of doctors we use in Dallas. They are precious people. Kiley and Skyler are still here. Both are about the same. Ginny is still across the hall from us and she has such an amazing spirit. Along with these that I have mentioned there are several others who are struggling also. The halls of this unit can be so lonely on the hard days and a smile from another parent can mean so very much. I pray that they all know how very much they are loved, even if it is from a distance.

Dave and the kids are on their way here. We are going to spend the evening playing board games in the family room and snacking. After spending a day outside in the bitter cold air I am sure they will welcome the warmth of this place. I hope to breathe in every minute of our evening together and make memories that will carry me through until the next time they come to visit. I will miss them terribly. We all spent New Years Eve together at the hospital in Dallas last year and this year it will be a repeat event except our location has changed to Omaha. No matter where we are as we bring in the New Year the important thing to David and I is that all 5 of us will be together. For this we are truly thankful.

I woke up this morning to find snow on the ground. How blessed I am as I watch the snow fall. I know it sounds ridiculous, but I feel as though God Himself gave this snow specifically to my children and my husband. How wonderfully excited they are. The last day of the year, the last day of our visit together could not be ending more beautifully than this. Thank you Father for loveing us so much that you care enough to make it snow just so I can see the smiles on their faces and in their eyes. My heart is feeling so blessed!

Dave has gone back to the apartment to pick up the kids and take them to Target to get gloves and hats and something to sled on. Since we live in Texas where it never snows we have only packed T-shirts and Crocks. I wish you could have seen the smile on the face of the "big kid" I married when I walked into Ash's room this morning to wake him up and tell him of the snow. I probably won't be seeing them back here at the hospital for hours.

I would like to say a huge THANK YOU to two of our nurses (Jaka and Emily) for ordering this snow for us. I love you both for "getting" it here just in time before the kids left. You guys along with a few others have made our stay here so much better and Ash and I love you for it.

Ash looks really good this morning. She is having to be stuck for all lab draws today and this makes me crazy. I know that replacing the line is what is best for her, but it is so hard to watch her be stuck again and again. Transplant life is not fun, but it is LIFE! For that we will forever be grateful to the Father, to our donor family, and to the staff here at UNMC. Tomorrow she will go down to the OR around 7:30a.m. so Dave and the kids will still be here with us. I am so thankful for that. One of the hardest things I have to do is sit in that surgery waiting room alone. God is so interested in the very details of our lives, and He knows how much I needed Dave to here with me.

I am thinking that starting the new year with a new line and a new hope of feeding our Ashley is a step in the right direction. I pray that this year holds precious memories, progress for Ashley, and a move for us back home to Texas. Even in the midst of difficult trials this year, God has blessed my heart and my family immensly. Our Blake and our Allison are beautiful, happy and healthy. Our sweet Ashley Kate is beautiful, happy, and alive. Our marraige is beautiful, happy, and stronger (even though we live miles and miles apart) then it has ever been. Our faith is beautiful, it makes us happy, and it is healthier and stronger then it could have ever been without the struggles we have had. To think that the very Creator of all the universe loves my family enough to be intimately involved with all that we do is a humbling realization.

May God bless you and your loved ones today and every day of this new year. May you seek Him with more of yourselves than you ever have, and may you wake each and every day knowing how very much He loves you. Thank you for caring about a tiny, baby pickle and her family. We love you. Its time to go watch the snow! Trish

The day is gone and all is quite now. Ashley is sleeping like a good little Gherkin. All in all I think she had a good day (aside from all the sticks). She looked really good today, had lots of energy and even started to show us some of her smiles. She got her central line taken out today and Monday they will put a new one in on the right side of her neck. Trish the kids and Nan have gone to sleep at the apartment and I am staying here with Ash tonight. I am starting to realize that my time here is fading and I want to hang out with her a little while longer. Sometimes I like to just sit and watch her and praise God for all He has done in her life and ours. I also thank Him for each of you who continues to pray for Ashley and our family.

Goodnight,

Dave

After 6 sticks anesthesia finally accomplished placing one IV in Ashley's tiny hands. They were requesting two IVs, but her mommy has had it. So if you consider 1 of the 2 successful then we have accomplished something. We are now praying that it will not blow in the next 36 hours. If it does they will have to physically take me out before I allow them to go after her again. I am afraid that after holding my tongue and my frustrations in for over 3 months I have finally become successful at earning the red X on our door. After today it may be difficult to find someone willing to take care of my Ashley. I really tried to be respectful, and I did not say anything ugly. I just REFUSED to allow them to attempt a line in her head or her tummy. I refused to allow them to continue poking and poking in unsuccessful attempts. The nurses are amazing around here and if they can't get it then I know that no one will be able too. I pray they will forgive my behavior today and that they will be able to understand what it is like to watch your child lay there and scream as they try to poke needles into her tiny, tiny veins. Until you have been in that position I am not sure you can understand how protective you automatically feel towards your baby. Today has been ugly and I do not wish to repeat it. Why does it have to hurt so bad?

If they do lose this IV then I will request that they take her into surgery early. Dave and I are having a small disagreement about that. I hope that it does not come down to this. He is much tougher than I am, and he tells me that if we lose this one he thinks they should be allowed to try and place another one. I say NO. Enough is enough. I do not want Ash to have to go through anymore than she already has. Please pray that this site will hold. I can't imagine putting her through this again. We are now waiting for the liver team to come and pull out her central line. They are wanting to have a 24 hour period without a central line in place in order to kill the staff that is in Ashley's blood stream. Please God, let this IV site hold until Monday morning.

In typical Ashley style we are not ending 2006 in a good way. I am praying that as we go out with a bang that we will usher in the new year with lots and lots of good news and progress. I am excited to see what God will do in our lives in 2007. Thank you for praying for us today. It means more to us than you will ever know. Trish

3 sticks, 3 pokes, 3 nurses and no luck.

How hard is it to get a little pickle juice.

We are praying for the next attempt.

Unfortunately we will have to have Ashley's central line removed. It was our hope that this would not be necessary, but it must be done. Ashley's blood cultures have returned positive again this morning. She is currently battling 3 different strains of staph infection. The good news is that it has not attatched itself to the valves in her heart. So we will give thanks for that. They will be attempting to place 2 different peripheral IVs in her and then they will pull the line and schedule her for surgery Monday morning. Ashley is so very tiny that it makes it very difficult to stick her. Her veins are small and they do not hold IVs well. My prayer is that they will be able to get them in quickly and as painlessly as possible for her. Then I pray that she will not have either of them "blow" before her time in the OR on Monday. They have agreed to give her a little sedation before beginning the attempts at placing them. I am so thankful for this. I hope she will not be aware of what they are doing to her. They tell me that this current line has been in for a long time. It was placed during her transplant 3 months ago. It seems like such a short time compared to the 14 months we kept her original line. How unreal it is to us that she is still requiring a central line. Our hope had been that she would be off of TPN quickly post transplant and that our days of line care would have ended. 3 months post transplant and her only source of nutrition continues to be TPN the very thing that caused our need for transplant in the first place. The good news is that we know her new organs work when we use them. If only we could get her to a place where she is infection free so that we might begin to work on her feeds once again. Today is a tough one, and Monday will be very stressful for me. Not only will Dave and the kids be leaving, but Ashley will also go into surgery. I dread sitting in the waiting room alone. As I sit and type I am reminded of the verse that tells me (paraphrased in my own understanding, " That He who begins a good work in Ashley will see it through until the day He completes it." I know this too must be in His plan for my sweet Ashley Kate.

Please pray for her as she must endure several sticks and pokes today. I thank you in advance for your prayers on my daughter's behalf. Much love, Trish

Well she is finally sleeping after a very eventful night. Ash perked up a little tonight. No fever so far (since around 4:00) color in her cheeks and awnryness in her eyes. She was looking so good I thought she might like for me to pick her up and let her perch herself on my right arm. This has always been Ashley's favorite spot. So silly me, I thought this precious bundle of baby girl all dressed in pink would be content to just sit there while I sang her a little lullabye. My song lasted a whole 1 minute before Ashley unleashed a waterfall of TPN. Honestly, it caught me so off gaurd that it took me several minutes to figure out just exactly what she had done. I was literally being drowned in sticky, smelly TPN. The rush of fluids was so strong it was splashing off the floor and back up to my face! What did she do? My sweet Ashley decided to pull the spike out of the bag of TPN while I was caught up in the moment of cuddling this little gift from God. I couldn't hold her and plug the hole she had opened in the bag so the fluid continued to rush out onto the floor and everything else. I began to holler for our nurse. Thankfully it was one of our very favorite who happens to love my Ashley enough to see the humor in this situation and not get frustrated at the amount of extra work we had just created for her tonight. So in she came to save the day, and after a few phone calls to the pharmacy and house keeping we began to get control of this uncontrollable situation. The good news about tonights exhibit of awnry behavior is that I was allowed to hold my "sweet" girl for a few minutes without a "thousand" tubes and wires connected to her. She was free even if it was only for a brief moment in time. The bad news is that they will happily add about $1200 to our bill! Freedom really does come at a high price. The smell in the room is so overpowering that even our lovely Hawaiin Breeze airfreshners that have made Ashley's room a popular hangout aren't strong enough to kill it. Poor Nan, she will be sleeping with the very strong and potent smell of the necessary "poison" we push into our baby everyday.

Let me just say that dinner at Romeo's will not be a repeat event for this family, and Dave has decided that after tonight he will be the one choosing our dinner selections. They definitely don't compare to our Pappacitas back home in Longview. Well, we are on our way to the apartment for the night. Praying for an uneventful night for our Ashley with no phone calls to tell us to rush back up to the hospital. What a blessing it has been to have Nan here to keep watch over Ashley at night so I can tuck my Blake and Allison into bed. I can't tell you how many times I wake during the night just so I can go look at the two of them sleeping and place those secret kisses on their foreheads. I have even been able to enjoy holding hands with my best friend as I drift off to sleep at night. How I long for the day when I have all three of the children back at home tucked safely in their own beds while I lay down next to Dave and call it a day. We have 2 more days together before they all fly home and Ash and I stay behind. I hope to make the most of the time we have left. God has been so good to us this holiday season, and we have so enjoyed being a family again. Take care and may He keep you and your families safe through the night. Goodnight and God bless. Trish

Ashley woke up this afternoon from a very long nap and we decided to sit her up and try and get her to play. She cooperated to the best of her ability. When you are running a fever off and on every couple of hours you just feel yucky, but she tried. She finally dug into her Christmas stocking and found her stash of Tic Tacs (this is one of her favorite things to play with). She sat up and shook them with all the energy her tired little body could muster. She then found a new pink (imagine that!) brush and comb set. She proceeded to drop her Tic Tacs ( I'm afraid all I could find was orange ones) and start brushing her own hair with the back side of the brush. After she made herself feel pretty, I placed a very large adorable bow on her head and she once again began to feel like her old self. All it takes is a little hair brushing and hair bow to make a gherkin feel like a girl again! There is no doubt in my mind she is destined to become a PRINCESS. In addition to fixing her hair she received a much deserved foot massage (she is so spoiled!) and a clean pair of pink p.j.s. She is now on her way to taking another nap.

Dave and the kids have been out all afternoon doing a little "Geo Cashing". I think that is what it is called. I really won him over this year with the birthday gift I chose for him. I had no idea I would make him so happy. Dave loves to go mountain climbing. Trust me, he is not a professional just a hobbiest, and I make sure he checks up on the insurance policies before he adventures out on his treks. This year I was walking through the store and came across a little device that allows you to pull up mountain trails and all kinds of other junk. I thought to myself he might actually like something like this and maybe he might manage not to get lost on his next adventure. Guess what? He loves it, and he thinks I'm a really great wife now! ( as if mothering his 3 children wasn't enough to convince him of that) Anyway, he and the kids now have a new hobby of using this little device to run around town looking for "treasures" that other men(no doubt) have hidden in towns and cities all over the place. They are having a great time together and that is what I love about it. Today they came back with a very dirty deck of cards and a bracelet. Yeah for them! They went 2 for 2 today. They left behind a pair of glasses made from a slinky and a tic tac toe board. This is great stuff if you are an 11year old or an 8 year old or a giant kid trapped in a 33year old's body.

Tonight is Allie's night to choose where we eat dinner. Since there is no Pappacita's she has chosen a place called ROMEOS. I am feeling a little nervous about this choice because their slogan is "NACHO TYPICAL RESTAURANT". This is announced on very large bill boards all over town by a giant, hairy, jalepeno wearing a sombrero! They serve a combination of mexican food and pizza. Sounds like a really classy place. Oh, well we will go anywhere just to have a Taco. It's really tough being a Texan stuck in Nebraska. There is a short supply of tacos around here!

Just let me say thanks again for coming back to Ashley's Story today. Your presence on this website is so appreciated. How I look forward to meeting all of you someday. Your prayers are precious to us and they are making a difference not only in the life of a "baby pickle", but also in the lives of her family. We love you and pray His blessings on you all. Trish

What a long morning it has been. The news received in report was not exactly what I wanted to hear. Ashley's cultures from yesterday are still showing positive growth. We had hoped that the infection would have started to clear from her blood stream by yesterday. This is not what happened. They just finished an eco cardio gram on her checking for possible staff attatched to the heart valves. We do not know the resutls until the cardiologist reads the report. We are desperately hoping to save Ashley's line. It may not be possible if the bacterium does not start to clear soon. If there is staff on her heart valves then it is likely that it is also attatched to the central line too. The new place for a line will be in her groin area. I have hoped to avoid ever placing a central line in this area of her. Ash has continually spiked a temp every couple of hours over the last 12. Her heart rate and respiration rate also climbs along with her temperature. I am praying our "new" prayer list specifically several times a day. My prayer is that God will allow her to stay off of the ventilator. All in all, my sweet Ashley just feels crummy today. She is finally resting and I hope that during this nap her body will do some really good healing.

I am fighting a heavy heart today. Along with Ashley there are some really sick children on the floor today. This battle is not mine alone. There are countless mommies sitting in ICUs all over the country praying the same prayers for their children that I am praying for mine. The one thing that I know with an unwaivering faith is that the Father is with all of us. He is listening to my prayers along with the many, many other parents who are crying out for their children as well. I know that He loves my Ashley. I know this because of what He promises me. I know this because I believe that God is holy, and righteous, and loving, and just. I know that He wants what is best for my daughter, and I am trying to tell myself that all of this is happening for a reason. When you love someone you want the very best for them. Sometimes what is best for us hurts. Sometimes it is hard. Sometimes it may take a while for us to realize that what is happening is for our own good. Today I am thinking that this difficult course my Ashley is on is for His purpose. He has a plan for her, and He is working it in her life. There is a scripture that has been on my heart since I woke up early this morning. I don't know why, but I have repeated it to myself more times than I can count today. Romans 8:38-39:

"For I am persuaded that neither death, nor life, nor angels, nor principalites, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature shall be able to separate us from the love of God, which is found through Christ Jesus."

So I know without a doubt that neither prematurity, or NEC, or short bowel syndrome, or liver disease, or strabismus, or transplant, or sepsis, or bacterium, or staff, or death, OR ANY OTHER THING shall be able to separate my Ashley from the love of God. He loves her, and because He loves her He wants to do what is best for her. I may never understand why she goes through all that she does, but I do understand that God loves her and He loves me. Today it is this understanding of what He promises me that will help get us through until tomorrow.

I just read Trish's post and realized one thing. I think Ash is going to sleep not because she likes my singing, but rather to escape it.

DAVE

I just walked into Ashley's room and saw her Daddy rocking the most beautiful baby girl in the world. He whispered to me above her large white hair bow, "I love you." He then pointed to the baby in his arms and whispered, "I love this." Next he pointed across the room and said, " I love those, too." (referring to our Blake and Allison). My heart smiled at the words he spoke, and I replied, "Its a good life we are living."

How sweet it was to watch Dave rock Ashley to sleep. She has got to be the only person I know who enjoys listening to him sing. She never complains. She just looks up at him and acts as if she likes what she hears. Eventually she drifts off to sleep. How blessed we are to be able to hold this little one in our arms. It has got to be the best feeling in the world.

After Ashley's bath she sat up in her bumbo chair and spent some time opening Christmas gifts with Blake and Allison. She played with each gift for just a brief moment, before beginning to yawn and rub her little eyes. She was tired and this was the opportunity Dave has been waiting for since he arrived last week. Before I could even think about picking her up he had scooped her into his arms and laid claim to our "favorite" blue chair. Honestly I didn't mind. I just sat back and thanked the Father that He gave Blake and Allison and Ashley this amazing guy to be their dad. They are truly blessed.

Tonight we are taking Blake and Allie out to eat at Blake's favorite restaraunt the Red Robin. He is so excited about the never ending baskets of fries. It doesn't take much to put a smile on this boy's face. My mom will be sitting with Ash while we go out with the older kids. I am looking forward to spending time having dinner out together. Tomorrow Allie has announced that she will be choosing where we go to dinner. I am not sure what she will come up with because I haven't seen a Pappacitas here in Omaha. Last night as we drove home (how odd it seems to be calling our apartment in Omaha, NE home!) David had asked Allison a question and she replied, "yes, sir." He quickly thanked her for being so polite and said to her, "You sure have come a long way." She then replied, "Yes, I have and I am so glad we flew this time. I don't like being in the car for 14 hours!" We all began to laugh at her and she couldn't figure out what we thought was so funny. She then said, "I mean it. I don't ever want to drive all the way to Omaha again!" Oh, how I love this little girl.

It really is a good life that David and I are living. We are blessed beyond our wildest dreams. We have a beautiful family, with 3 amazing children. We have friends from all over who love us enough to check in our little one daily. We have a church family full of the most amazing people who love the Lord and who have been there taking care of us throughout Ashley's story. We have a support system larger than I could ever count, and we have a Father in heaven who loves us so much that He gave His only Son so that we could know Him for all eternity. Life doesn't get any better than what we are living. Thanks for making our life so great. I hope and pray that someday we will be able to bless you all as much as you are blessing us. Trish

This morning my Ashley looks so very good. She is responding to treatment quickly this time. We are so encouraged by the progrees she is making in fighting this round of infection. They have now taken her offf of the ventilator and she is breathing well with only 1 liter of oxygen support. She has had a very busy morning. They have also removed her catheter. Late yesterday evening they removed her art line. With every removal we are inching closer and closer to being allowed to hold our little one. What a blessing it will be for Blake and Allison to hold their baby sister for the first time in MONTHS! We are more than excited. I wish you could see her reaction each time one of them come into her room. Even while on the ventilator she gets so excited she looks like she might jump off of the bed. She kicks her little legs and waves her arms. She smiles and waves "Hello" to them repeatedly. She loves to grab their faces and pull them as close to her as she can. What a blessing it is to watch our three children play together.

There are many, many things going on with Ashley at this time. One of the cultures has actually grown out a mold. They are not sure if it is really in her lungs or if the smear has become contaminated. They have done the CT scan, and radiology seems to think it is postules of mold growing. The Infectious Disease team do not really agree, because when they look at the films they feel as though the areas of concern are to circular in shape. The ID team also believes that the quick response to treatment supports their opinion. If it were a mold growing in her lungs they say it would take weeks and weeks to respond. I don't know exactly what it is, but I do know that God knows. I am trusting Him to resolve the issue. At this point we are all agreeing that a lung biopsy is too aggressive. We will just continue to treat as we are and see if she continues to respond. They would like to do another CT scan early next week to see if things are changing. We have consented to this.

Things seem to moving in a positive direction this morning. Ash is quietly resting in her hot pink boppy pillow and she looks absolutely beautiful. She will get a really good bubble bath and a shampoo after she wakes up. Her daddy plans on giving her a little manicure, and then Allie is going to choose just the right pair of pink jammies for Ash to relax in. We are counting our many blessings this morning and as we count them our list includes all of you. You are the support system that makes it possible for me to feel strong. You are playing such a huge part of our Ashley's story. I can't say thank you enough for praying for my Ashley. Thank you for checking in on her today. We love you guys. Trish

She is one of the best gifts we have ever received. She is one of the most beautiful gifts we have ever received. She is the tiniest gift we have ever received, but if you could see what is inside of this little one you would be amazed at just how big she really is.

Today Dave and I met with a team of doctors, nurses, social workers, and transplant coordinators. Our goal was to try and figure out just what they "see" when they look at Ashley and the course of her transplant and recovery. Let me tell you that walking out of that meeting my heart was lighter. Our recovery has not been an easy course and it has not been a short course, but it has been a BLESSED course. We were able to all make sure we were on the same page when we look to Ashley's future. Knowing full well that God will be the one to decide what her future holds, we tried to form a plan. In the end one of the pieces of this recovery puzzle that I had really failed to add in was Ashley's size. When I look at my Ashley I sometimes forget that she is just so tiny. She is not and has not ever been a normal sized child. She was born at 28 weeks and weighed less than 3lbs. She remained at 12lbs from January of this year until August! At transplant in Sept. we had managed to add a pound and a half to make her a whopping 13 and half pounds. There is no mistaking it, my Ashley is tiny. After our meeting I realized that some of what Ash is struggling with is a result of her tiny little self. Everyone on her "team" feels that Ashley will make it. We are battling a round of sepsis. This is our 4th episode. Our list of goals include: Getting her off the vent (and staying off!), Getting her to full feeds (55ccs per hour), getting her off of TPN (for longer than 3 hours), and getting her central line pulled out! If we could get to the point where her line can be pulled then she has a great chance of avoiding the episodes of sepsis. Once she remains on full feeds and successfully avoids infections for a period of about 1-2 months then guess where we are going? HOME!!! This is my new prayer list. It is specific. It is what we need to happen so that we can bring our tiny gift back home. I do not feel as though this is impossible. I know that with God all things are possible. I know that if it falls within His will that she has what it takes to make it. She may be tiny, but on the inside her spirit is so BIG!!!

Please join me in praying for our "new" prayer list. If you could see my Ashley today and if you could have seen where He brought her from yesterday you would be encouraged. You would be amazed. You would never doubt the hugeness of our God.

Thank you guys for loving Him so much that you opened up your hearts to accept our tiny gift. She is tiny, but she is tough. I am grateful for your encouraging words, and for your prayers. I hope to share her with you all someday. I hope to give you the opportunity to see this tiny little girl who you helped to pray through. You are loved and you are appreciated! Trish

This morning everyone is dancing in the halls because they have actually found a "bug" growing in Ashley's blood. I know it seems silly to be celebrating this, but she has been sick so many times without any known causes that this is actually good news for us. They have identified what has made her this ill, and they are now able to treat her with the right anitbiotics to kill this infection. She is actually already feeling so much better than she has over the last couple of days. She is on the ventilator, but she is awake and playing with all who pop in to visit with her. She has managed to smile a couple of times with the tube in her mouth and down her throat. Her spirit amazes me! She teaches me to be content no matter what circumstance I find myself in. I love this little girl!

We actually expect her and her x-rays to look worse by tomorrow. She still has her beautiful face with her sweet eyes and her tiny little nose, but the fluid will begin to shift soon and she will swell again. She received 4 fluid bolus' to maintain her status yesterday. Everything from a blood transfusion to albumin, and by tonight or tomorrow the sepsis will cause her vessels to become "weepy" and the extra fluids will shift into her tissues. I am more than thankful that God led us to this hospital. The doctors and nurses are incredible, and they did an amazing job for our daughter once again. I can't say thank you enough for the wisdom they used in making the right decisions for Ashley. Yesterday we watched Ash waiver between life and death. It was definitely one of the hardest days so far. Her lips had become blue at one point and the feelings of helplessness had begun to overcome me. I stood back and watched as God used the doctors and nurses to spare my Ashley. I will forever be grateful. After spending so much time here, I now have developed a "safety" net of friends who work at this hospital. They are so much more than just professionals. I see how much they care for Ashley and myself, and I am touched and honored to call them my friends. The nurses have become more than just our nurses. Several of them read Ashley's journal on the days when they do not come in so they can check in on her. I love these ladies and I thank God for their friendships.

Last night was Ashley's three month post transplant anniversary. As we watched her go through a CT scan of her head, sinus, chest, and then abdomen I was so humbled to see her amazing new organs. I am still blessed by the thought that a family would consider my family and my daughter's life during their most difficult moments. Ashley's new organs are working and functioning beautifully and without this gift she would no longer be with us. I know that if she can survive the immunosuppresion related infections that she will have a real chance at living a beautiful life. Please remember to lift up our precious donor's family when you pray for Ashley. Without this family our story would have ended.

Today we feel renewed. The Father tells me that, "His mercies are new every morning", and today I know that more than ever. I see life in Ashley's eyes. I see her awnry streak back as I watch her "tear" up Blake and Allie. I see her rosy cheeks. I see my daughter and she is still with us. She is strong. She is determined. She is happy, and she loves us. That is all I need to see. Tomorrow will be whatever it will be, but today I have seen enough. The mercy of the Father is evident in her life and mine.

I have spent most of the day doing my best to avoid this journal. I am struggling for words. Not just any words, but the right words. How careless my words must have been in the past. Perhaps the randomness of my thoughts or feelings caused some to wonder just who I am. What mother would allow her child to endure all of this? What mother would choose such a difficult situation for her family and her two healthy children? What mother would open up the heart of her family to become so vulnerable to the world? In all honesty, I must admit that I have often wondered what kind of mother would do these things. As I search for the answer to these questions I continually find myself saying, "The kind of mother that I want to be. One that will not give up. One that owes it to all of my children to do the right thing no matter how difficult it may be. One that strives to teach them that God is gracious, and kind, and merciful, and just, and loving, and faithful."

On this journey that I find Ashley and myself walking hand in hand, I have learned many things. I have learned to love more. I have learned to laugh harder. I have learned to smile bigger. I have learned to understand deeper. I have learned to value my "treasures". I have learned to forgive fully. I have learned to judge never. I have learned to offer honesty always. I have learned to respect. I have learned to take the good that people have to offer and to leave the bad behind.

I would like to say that although my heart hurt and my tears fell, I appreciate the honesty in which the words were spoken. I respect the one who was brave enough to pose the questions that I am afraid many may be asking. I am grateful for the wisdom used in signing "anonymously". This allows me not to harbor hard feelings towards you. Now I am able to look at your post without passing judgement on anyone, and just pray that you will return to our journal again. I pray that you have not been hurt by the response the comments received. I pray that you too love my Ashley enough to continue praying for God's will in her life. I pray that you will not judge me too harshly for wanting my daughter to live. I pray that you will be able to see that my heart is honest and that my "ramblings" are unrehearsed. I pray that somehow you will truly see me and know that I am doing the best that I can to be the mom that all 3 of my children deserve. I am not angry. I am searching for His will, and I am praying that if it could be His will for my daughter to grow up that He will hear my plea and grant my hearts desire. How I wish I could share with you ALL of my Ashley's story. If only you knew of ALL the wonderful things that only GOD Himself could orchestrate in her life. I think you would understand me a little more and that you would see that although I am afraid of what His perfect will might hold for my daughter it is what I must seek from Him. I choose to believe that the words posted early this morning were meant for good and not evil. I choose to believe that they came from a sincere heart who had no intention of causing me pain.

Again God has been good to my family. He has given us another day with our sweet girl, and He continues to teach me lessons through her life. I am not perfect. I am not super mom. I am not really anything other than saved by His grace. I am a believer. I am a wife. I am a mother, and I don't know how to be anything else. Thank you for your encouraging words. Thank you for wanting to protect us from hurtful words. Thank you for loving Ashley, and thank you for praying us through another tough one. I truly, truly love and appreciate each one who willingly comes to share Ashley's Story.

I almost hesitate to sit and type this morning and ask you to once again please begin to pray for our Ashley. This morning around 5:15 things began to change. Ashley has spiked a temperature of over 103 and her heart rate is climbing. Last time we looked it was 210. They have sent cultures from every place possible and they continue running tests looking for something. They will be re-wiring both of her lines at some point this morning, and this breaks my heart for the pain and distress it will cause her. I realize that many of you may be growing weary as you walk along this path with us, but please let me assure you that she is worth it. She is amazing and wonderful and beautiful, and I know in the deepest part of me that He created her to do big things in this world. So today I humbly come to you again and request prayer for my daughter. Things aren't looking too good and she is getting sick again. She is fragile and a good day can turn into a very bad day in just a matter of minutes. We will update with information as they gather it. Take care and God Bless. Trish

Well the day is now done, and we have enjoyed another Christmas with our sweet Ashley Kate. God has been so very gracious to us, and He has allowed us to see her smile a few times, watch her play for a moment or two, and place kisses on her sweet face. She spent the majority of this Christmas day resting and dreaming. We did not open her gifts today and she did not feel well enough to peek into her stocking along with Blake and Allie, but we expect her to be feeling better and better each day so we plan on doing those things with her later this week. She did not wear her Chrismas dress, instead she stayed in her diaper with her new fuzzy bunny slippers that Grandma brought to her. We took the sweetest pictures of her in them, and I promise that once I locate the right cord we will post several new photos and video.

I believe that Blake and Allie had a wonderful Christmas, and I would like to say thank you to so many of you who thought of special things to send their way. Your gifts and your thoughtfullness during this busy season were very appreciated. So many of you sent amazing things to me, and I was blessed by each of your gifts. Thank you for the time and thought that went in to each of them. We spent the day playing games, building toys, doing crafts, and peeking in on our little "gherkin" . We took turns sitting next to her bed and watching her sleep and play. My heart is so very blessed and tears fill my eyes when I think back to the days that have led us to the place that we are in tonight. God is good, and He has given us the most amazing gifts. I can't help but think of our precious donor family on this Christmas night, and I hurt for the longing they must feel in their hearts. I pray that they were given peace and comfort today and everyday. Their gift to us allowed us to spend this special day with a tiny princess who we love more than anything, and I will forever be grateful to them.

To my family who we missed so very much today I would like to say Merry Christmas. We love you and as I spoke to you today and overheard the noises in the back ground how I longed to be there with you. I so missed tip toeing through the children asleep on the floor and around the tree while stuffing their stockings with things that would make their eyes sparkle. The laughter I overheard around the table as you "whipped" each other in a round of Sequence and Dominoes made my heart smile. I look forward to bringing our sweet baby next year and allowing her to run the show. Although we were miles apart you were all so very close to our hearts. We love you all and we pray your holiday was made precious by the One who gave us all so very much to celebrate.

Good night to each family who took the time to check on our Ashley today. We love you and we treasure your friendships. We wish a Merry Christmas. May He bless you all. Trish

Tonight we have been blessed by an "angel". Ashley is one of the sweetest things I have ever seen. She spent most of the day resting, but tonight after her bath I slipped her into her Christmas p.j.'s and she looked so sweet she must be an "angel". How precious she is. She may not really be an angel, but she is definitely a miracle.

Christmas has always been such a magical time for me. I love everything about the season. This year has been difficult, but tonight I am feeling the "magic". I am so very thankful to have been given another holiday with my sweet Ashley Kate. She is amazing, and she is the most incredible gift I have ever received.

We are preparing to leave and go to our apartment with Blake and Allie. I hate leaving Ashley here, but we have decided we would rather open gifts there tonight so we can wake up early in the morning and bring our stockings to the hospital to be with Ashley. The kids are looking forward to sitting with her on her bed and seeing what surprises are tucked inside of their stockings. (Don't tell Ash but we have packed two jumbo size tic tac boxes deep inside of hers. She is going to love it!) Allison thinks it just won't feel right opening gifts at "home" tonight without Ashley, but I am hoping she will enjoy the things she finds inside of her packages. I know we will feel an emptiness without her, but I am going to do my best to make it as special and magical for them as I can.

I pray you are all enjoying precious holiday moments with your loved ones tonight and that you are making memories to last a lifetime. We love you all and we wish you the merriest of Christmas'. Enjoy the magic.

We are so happy to post that she is not on the ventilator and she is breathing on her own with only 1 liter of oxygen. Immediately after the tube was pulled she reached for the wet wash cloth I had been using to wipe her little face and began trying to get a drink from it. She is so smart! She knew I had put water on it and she was thirsty. We quickly began to wet her "pink" sticks so that she could have drink. I wish you could have seen the smile in Blake and Allison's eyes. (they were wearing masks so you couldn't see the smile on their faces) It really will be a wonderful Christmas for them. They are so happy to see her smile without the tube in her throat. All of the excitement has been very exhausting for her so she is now napping.

My heart is full of gratitude. The smile has yet to leave my face. He is good and He blesses us each day with so much more than we deserve. We have Ashley and we have Allie and we have Blake and that is all we need to celebrate the birth of the One who gave so very much. God is good and we are thanking Him for our "Christmas miracle".

Today is the day. Its Christmas Eve and we are waiting on Ashley to wake up so that the kids might actually see their "Christmas Miracle". A week ago I would have never even thought it possible to have Ashley breathing on her own by Christmas, but that is exactly what God is good at. Doing the impossible. Things that we could not do, things that only He can make happen. She looks so beautiful this morning! Her skin color is amazing and her little cheeks are rosy. Rosy enough to be Santa's little helper.

Her blood pressure is still a little high, but it is under control with the IV drip. They will be attempting to wean it back as they wean the steroid dose. They have written for an incredibly high dose of oral blood pressure med in hopes that it will help regulate the problem. I am praying that she will tolerate the changes and be able to become stronger and stronger.

Allie has been busy wrapping gifts for all the children on the floor. She and Blake will spend the morning delivering a little Christmas Cheer to the other patients. They are so excited. I really appreciate our parents for making this possible. There is nothing that quite compares to a giving heart. I would rather see the smile on their faces from giving to someone rather than a smile on their faces from receiving. We are anxiously awaiting the delivery time.

This morning I am counting my blessings for being in this place that we are. We are all together and that makes this holiday more than special. Blake and Allison are more excited about being with Ashley than they are about anything they see under the tree, and that makes a mom's heart smile. We are truly, truly blessed.

I am going to go see how close we are now to removing Ash's breathing tube. I will update you all after she is awake and breathing on her own. Thank you for your prayers and for all the amazing things you do each day for my family. We wish you all a Merry Christmas. Trish

Ashley has settled in for the night and we are now going to go to bed. After this day I feel as though I could sleep for years. She is holding her pressure in the 120's and everyone is comfortable with this for the night. They continue to wean her sedation meds in anticipation of taking her off of the ventilator tomorrow morning. It looks as though He may give Blake and Allie the "new" Christmas miracle they have been praying for. They would love for Ashley to be awake on Christmas morning. I am continuing to pray for this to happen.

In the midst of all of the concern and stress, we have tried so very hard to make today a good day for Blake and Allie. We have taken turns spending time in the family waiting room with them. I am so thankful it is right across the hall from Ashley's room. We all finished stringing our popcorn garlands tonight and we are ready to finish off our tree. Allie and I busied ourselves creating the most beautiful Gingerbread House I have ever seen. One of the Sunday School classes at Mobberly Baptist Church sent it up for us today. Thank you so very much. It was a good distraction for the children and a precious memory I will treasure forever. She even made a gumdrop snowman in the yard of our house complete with a broom and a hat! I can't wait to post the pictures for you to see. We enjoyed wonderful snacks all day courtesy of the care package sent to us by the 4th-6th grade GA class from East Jena Baptist Church in Jena, Louisiana. Thank you so much for sending it!

Today has been very difficult for us, but He has still been here. I don't know where we would be if we did not have our faith. It is my belief in who He is that helps me make it to the end of each day. I know that He has a plan for my daughter and I can see that He continues to work in her life. I do not understand why this plan must include days like today, but I am confident that He will finish the work He has started in Ashley's life. There are times when I struggle to find Him through the panic and the tears, but I have never failed to eventually see Him. He is here and He is taking care of her and I am thankful to know how very much He loves her.

Thank you for loving her. Thank you for loving us. Thank you for loving Him. When we get down to it this is all that really matters. My prayer for you is that you will be able to see and feel the love that the Father has for all of us. He loved us so much that He willingly sent His only Son. He came as a baby. He came for me. He came for you. He came for Ashley. He came to die so that we might actually live. This is love and I have never known a love like this before. May you find what you seek this Christmas and may you find His love. Good night and God Bless. Trish

Thank you for your faithfullness to us during this very busy holiday weekend. How I wish I were at home with my children celebrating the wonderfullness of His birth, but that is not His plan for us this year. Even though we are in a tough place this Christmas He is still here, and He is working.

They have started a constant i.v. drip of a different type of blood pressure medicine. I was sitting in my chair next to her bed, head in my hands, praying that He would please intervene if it were in His will. I was asking Him to please take His hands, the very hands that created my Ashley, and push her blood pressure down. I wanted Him to please make the numbers go down and cause this medicine to begin to work. After a while I noticed that the alarms had gotten quiet and when I looked up her systolic pressure had dropped from 165 to 130. He is working! He is hearing our prayers. The doctor came in to tell me he too had noticed the drop and that we were still not in a "safe" place, but it is certainly a better place. My heart is feeling so much lighter just knowing that it is capable of dropping. The concern with this medicine is that it must be monitored so that we do not cause her to "bottom out". That would place in a more dangerous place. The ups and downs are hard to understand and hard to keep up with, but I wanted you all to know that He is listening. He is working in her life. He is hearing our crys, your crys, and I love you all so much for loving my Ashley enough to take time away from your families to pray for mine. I am thankful for all of you and I am wishing each of you a Merry Christmas.

Ashley's blood pressures are now 160's over 90's. It is dangerously high. We are now beginning our 5th med of the day. She has responded to nothing. They are going to start a drip of something I can't even pronounce. I have lost track of what she has and hasn't had. PLEASE PRAY for her tonight that she might stablize.

There are days when I definitely feel as though my entire life is one big "balancing act". Today is one of those days! We are trying to find a balance between showing enough Christmas spirit and joy for the older kids and the concern that they can obviously see in our eyes as we come in and out of Ashley's room. How are we supposed to pull this one off? I have no idea. I am a mess on the inside and my mind races with concerns and fears for my sweet Ashley. At the same time, I put a smile on my face when Blake and Allie approach and fake an excitement about the holiday that is to arrive regardless of the situation I find us in. In no way do I want them to miss out on all that Christmas day has to offer. We have basically explained to them that Ashley has started a new medication today and that in order for it to work we must stay out of her room, keep things very dark and very quiet, and not touch her. I sit in silence and watch the monintors for hours. The numbers are red. The numbers are flashing. The numbers are too high. The numbers alarm.

At this time we have maxed out the dose of blood pressure medicine that should be allowed for a 24 hour period. The medicine they used yesterday is not an option because it shot her heart rate over 200. The medicine they would like to try is not really an option because it is a "beta blocker" and today her heart rate is too low to risk it dropping in response. They assure me there are several more things we can try. The only problem is that with every option there are side effects and risks and we have no way of knowing how Ashley's body will respond to them. We think that the introduction of a new steroid that was used to wean Ashley off of the dopemine 2 days ago is the reason for her increase in pressure. The only problem is that her body desperately needs this steroid to try and enhance an attack on what has caused her to become so ill. The steroid can not be stopped. It must be weaned back slowly. While we wait for this weaning her blood pressures continue to rise. The doctors are trying to "balance" the risks of each drug with the possible benefit. Everyone has a theory about the cause of Ashley's repeated illness'. They have now determined that her adrenal system is "shot" because of the high doses of anti-rejection medicine that she is on to keep her from rejecting her transplanted organs. Because of the lack of adrenal response she needs to be on a dose of this hydrocortisone steroid, but it is causing her dangerous increase in blood pressures. What do you do? I don't know and I am afraid that nobody really does know. The good news is that they are still planning on removing the breathing tube and allowing Ashley to wake up in the morning. This is the joy we are finding in our situation today. She is strong enough to breathe on her own now, and for this we are more than thankful.

Trying to balance the newly gained medical knowledge( that I wish I had never needed to learn) with my faith in God and His ability to change her situation is another area that I am struggling with. Honestly Dave is much, much better at this than I am. When you look over at him you might see one or two tears fall down his cheeks. When you look at me you see the tears falling freely and uncontrollably. He is concerned, but he successfully gives it to the Lord and doesn't continue worrying about it. I am concerned to the point that my prayers are a garbled mess of pleas and requests that make no sense, and I am constantly picking it up again and again and again. Dave is a source of strength, and I am exhausted because of my weakness.

On a personal note I would like to say Happy Birthday to this amazing man I am blessed to call my husband. Thank you for you strength, your integrity, your love for God, your silly humor, your leadership, and your friendship. Thank you for giving me Blake and Allison, and thank you for choosing our Ashley. We are all blessed to have you in our lives, and I admire who you are. I love you, and I hope that despite the trials we find ourselves facing today with your sweet baby girl that you have a very happy birthday. God has blessed us, and I wouldn't want to travel this path with anyone else. Trish

We just came into Ashley's room from lunch and found "them" outside in the hall discussing her rising blood pressures and heart rate. Anytime I come around the corner and see them outside talking I know things are not good. When I saw the monitor and saw that her heart rate was above 190 mine began to immediately beat faster. Something is causing this rise, but what is it? They had just administered a new blood pressure med trying to lower it. I hope this is the cause, but they don't seem to think it is. Her fluid status is all over the place and they are desperately trying to get the fluid to shift back into her vessels. They turned off the paralytic this morning and she is now fidgeting and beginning to jerk around. Obviously I am concerned and when things like this begin to happen I get so nervous. I am having a difficult time juggling my emotions and trying to protect the kids from realizing that we are concerned. I am feeling very torn at this moment. The good news is that she is making progress on the vent and if tomorrow's x-ray looks good then they plan on weaning her off of the ventilator which means she could actually be awake and breathing on her own by Christmas. What an answer to prayer this would be for all of us. Blake and Allison are fervently praying this prayer. At every meal, at bed time, when they visit with her in her room they are asking God to please let Ashley be awake so that she will know they came to spend Christmas with her. At one point this week I would have never thought this possible, but now it is looking like He may answer their prayer with the answer they have been seeking. Please join us in praying that His will be done and that if it is safe for Ash to be awake that she will be.

Let me take a moment to say thank you from the bottom of my heart to each of you who have been so very generous to me and my family. It seems that almost daily something arrives for the children to help make this a memorable holiday season. I am humbled by your willingness to give and by your generosity. God has used His body of believers to touch my family and we will never be the same. If only I could thank you appropriately and help you to understand how very much each of your prayers, gifts, thoughtfullness, kindness, and support means to David and I. There are no words to describe the debt of gratitude I feel towards all of you. Please accept my sincerest THANK YOU and know how very much I love you for loving Him enough to love my Ashley, my Allie, and my Blake. You are helping to make this a very Merry Christmas for us all. The gift I appreciate the most is knowing how very much you all care.

Allie and I stayed up until 1:30 this morning stringing popcorn and cranberry garlands. We so enjoyed sitting together and laughing and talking late into the night. She is beautiful and precious and so very grown up. Blake was too tired and decided to go to bed early. This morning when he woke and realized there was still more to be done tonight I could see the smile in his eyes. David and I have been trying to get the children to give us some idea of what they might like to have for Christmas. After trying for such a long time, I finally said "it is o.k. to want something and we are asking you what you would like to have for yourselves." Blake finally ansered me and said, "Mom, what can I say? We are not greedy. You have raised us right!" Dave and I were so tickled by this statement and touched at the same time. Unfortunately we find ourselves in the same dilemma hoping we have chosen things they will like.

I am looking forward to the "grandmas" arriving this evening. I find myself feeling very torn if I leave Ashley in her room to spend time with the kids, or if I leave the kids in the waiting room and spend time with Ashley. I think I will be more comfortable when I know that we will have someone here to sit with Ash while we sneek away to a movie, or to dinner or something. Thank you all for loving us and for visiting Ashley's story today. We will be posting new pictures and video of our sweet girl just as soon as I can find where I have placed the appropriate cords during my last move. Thank for your patience. Take care and God Bless.

We have just been told that the results of Ashley's Cystic Fibrosis tests are negative! Even though we were given the same result before coming to Omaha, just the idea that they thought she might have it made me so nervous. I am thanking God for allowing us to not have this disease.

Today has been a tough one in Ashley's room. They still have not managed to get her blood pressure down to the desired levels. We are having to be extremely quiet when we are in with her. We don't talk, or turn on the T.V, or make any noise. She is responding to the sounds of our voices by showing an elevated heart rate and blood pressure. It has been very difficult for me not to talk to her all day. I usually spend my days kissing her head and her fingers, singing her songs, and telling her how much she is loved. Today just the sounds of our voices are causing her to become more stressed. She is still paralyzed and not able to move or open her eyes. It makes me so sad to know that she is trapped inside of her own body and she is not able to communicate to us what she needs. Hopefully they will be able to remove the paralytic in just a couple more days. She has developed a fairly large air leak in her breathing tube. They are keeping a close eye on it and we are praying it does not have to be removed and replaced. The trauma caused to her throat when she has to be intubated makes me nervous. The blade usually causes her to bleed for a couple of days when they suction her.

Our Ashley is so beautiful. I know it is hard to see past all of the trauma that the swelling has caused, but when I look at her I still see beauty. She is still my sweet Ashley even though you can't recognize her. She is snuggled into her bed with her gray kitty cat holding the ventilator tubing off of her chest, and she is covered up with some of her favorite pink blankets. Her pink CD player is softly playing Silent Night in the background. When I sit next to her I see the magnificent work of the Creator, and I am so humbled to be allowed to love this little one.

Thank you all for praying for our Ashley today. I know this is a very busy season for everyone and to know that you pause during your day to pray for our family blesses me so very much. Although we are so far away from everyone, we are excited to know that the joy of His birth, and the excitement of His season will keep us close to you all in our hearts. Take care and Merry Christmas! Trish

You guys been watching the weather reports. 2-3 feet of snow in CO and western NE.

Back in the summer we trying to decide on which transplant center we should take Ashley to. Our choices where Miami and Omaha. For a variety of reasons we ultimately chose to list Ashley for organs in Omaha. I think God truly lead us to this decision. The average wait time for organs in Miami was 3 months and in Omaha about 15 months. Ashley did not have 15 months left with her old liver. But despite this small problem OK, this HUGE problem we were led to choose to list her in Omaha. God worked a miracle and the call to come for transplant came just 3 weeks after we came home from Ash's transplant evaluation. Even as I type this today I still am amazed at how fast God provided organs for Ash.

One thing I remember about our time this summer at the transplant evaluation here in Omaha was them telling us that if we were in Omaha this winter we would get to see lots of snow. Now we are here and snow is all over CO and NE and there is not a lick of snow here. It's not even cold. Almost 50 today. I was griping about the lack of snow this morning. I was telling the nurses that I came to Omaha and it is winter and I am ready for some snow. Remember the "WHERE'S THE BEEF" lady? Well I ask "WHERE'S THE SNOW?"

I was telling Ash's nurses and doctors that if we had chosen Miami I could be wearing my flip flops and headed to the beach right now. I know they would have delivered.

I left the hospital to go get some lunch a while ago and since I have been so grumpy at the lack of snow I decided to lift my spirits by singing Christmas songs in the car. Now I know and all of you know I can't sing, but I was getting in the mood. I altered some of the words to fit our situation so here goes.

Pretend you are singing along to (Let is Snow)

(Chorus)
Now the weather outside is warm,

They told us it would snow,

But they told us a bunch of fibs,

Where's the Snow? Where's the Snow? Where's the Snow?



OH- We finally came to Omaha,

And its winter time,

So since we came all this way,

Let it snow all day, all day, all day!!

Repeat Chorus 2X


Sing this one to (Santa Clause is coming to town)

You better watch out, you better not pout,
I'm gonna cry and I'm telling you why,
ther'er is no SNOW. :(

They told us to come, they told us it would snow,
so we came to Omaha, and wher'ers the white glow? :(

Oh they better watch out, the better look back,
I might just jump em' and attack,
Oh, where'er is our snow?

OK, now you know, not only can I not sing, but I also can't write or compose music. God gave me some talents I know, but music is most certainly not one of them.

Have a wonderful day,

DAVE

It feels so good "just being together" again! We love to hang out and just be us. Last night at the apartment we really enjoyed decorating the mantel and hanging our stockings. It looks really great. Dave drove us to the apartment and before he left he and I were sitting on the couch for a brief moment together. I could see in his eyes that he was feeling the same sense of loss that I was. As wonderful as it was watching Blake and Al hang the stockings, our hearts still felt an emptiness inside. Ash was not with us, and she was supposed to be. I tried to shake off the saddness and concentrate on the joy of the holiday. I realize that Ashley is still with us even though she is not at the apartment celebrating. Unfortunately, I know too many mommies who will not have the opportunity to hold their precious babies this holiday season and I know they would give anything to trade places with me, so I am still blessed.

Today we will be picking up a Christmas tree that one of Ashley's nurses is letting us borrow this season. The kids and I will spend the evening decorating it together. They are so excited. After it is decorated and they have fallen asleep I will begin to slip a few of their packages under it. One of the saddest things for me has been knowing that our tree at home is empty of packages. Usually I place a few new packages under our tree each evening as the kids are sleeping. Then in the morning they race to the tree and sit there with each other admiring the new gifts that have arrived. I know they will be excited tomorrow morning when they see gifts selected for them sitting under our newly decorated tree. I can hardly wait to eavesdrop on their conversation!

In the overall picture of things we feel as though Ashley is improving. If you could see the way she looks this morning you may not agree. "Cosmetically", as the surgeon put it to us, she does not look good. The encouraging thing is that on paper all of her labs do look better. Her chest x-rays are still looking yucky showing the middle and lower lobes collapsed on her right lung, but the pnuemonia looks to be making a slight improvement. The intesivest doctor feels as though her films are actually lagging behind the progress he thinks she is making. She has now gone from the low extreme of her blood pressures to the HIGH extreme. Today they will be battling it trying to get it to come back down into range. I know things seem so confusing, but there are so many factors to be looked at and considered in managing her health. She is making good progress on the ventilator and they have been able to wean her oxygen support from 100% down to 30%. This is definitely something to give praise about! Her stool output is high. The cellular result of her bowel biopsy tells us that she is not in rejection. Thank you Father! It did however show an enormous amount of bacterial overgrowth in the distal portion of her bowel and this may be causing the high level of output. Unfortunately this is a side effect of the extreme amount of anti-biotics she has been on. We have alot of things on the schedule for Ash today. She will be busy trying to recover.

I am so thankful that all 5 of us are here today and that we have the opportunity to "just be together". It is a wonderful feeling to scan the room and see the faces of my three children. Each one of them are so amazing. It gives Blake and Allison great peace to be here with Ashley and to know that they are involved. I realize that He has been more than good to me and to my family. I am so undeserving of all that I have been blessed with. I pray that today you will be able to go home and spend precious moments with your families "just being together". There is no greater feeling in the world then to know that you are loved. May He give you peace today as you hussle and bussle, and may you pause to reflect and realize just how very much He loves you. Trish

I don't know why Trish speaks so favorably of her "favorite" blue chair. It is this time of night when I should be sleeping that I wonder how Trish has spent so many days and nights in this chair so long. It may be her favorite chair, but I just think it stinks.

I am going to go give it another try.

Goodnight,

DAVE

I don't think I will ever be able to understand why children have to die. There are no words that can describe the feelings I have as I watch child after child slip away. My heart is broken over the loss of the precious children who we have come to know and love during our stay here in the PICU. Ashley and I have now been witness to the loss of 5 beautiful children.

Chloe's parents have made the decision to let her go. I pray that God gives them peace in their hearts and that they will seek Him during this time. I only know the depth of the pain that I feel in my heart when I think of this beautiful little girl, and I know that it can't compare to what they must be experiencing. Each time a new child moves in to the room that used to "belong" to our transplant friends I almost feel as though we have betrayed them. It is so difficult for me to watch a new patient take over that place. I am asking God to help me as I try and understand why Chloe had to go. I know that He will take care of her, and that He loves her so much more than I can even imagine.

My sweet Ashley Kate has remained stable all day. She did well recovering from the bronch procedure. The secretions that were found and removed raised concerns and questions in the mind of the doctor. She would like to test Ashley for Cystic Fibrosis. We had Ashley tested in Dallas before we came and the results were negative. Even though I know the result of the last test that was done, I still find myself shaking on the inside when I think about it. Please God, let this be nothing! Let the test return negative for a second time and put it behind us and out of our vocabulary. I am nervous for her. I just want tomorrow to come and for the test be over with with a NEGATIVE result.

Allie so badly wanted to just touch Ashley tonight. Just a little bit for just a minute. After she scrubbed, she went over and un-covered Ashley's hand. She held on to her "puffy" little fingers and softly rubbed them with her own hand. How sweet it was to watch my two girls holding hands again. Tears rolled down my cheeks as I watched the tenderness that Allison feels towards her sister show itself. After a brief moment of "holding" her sister, she began to whisper questions to me. I did my best to answer her as honestly as I could without causing her to become frightened. She wants for Ash to wake up before Christmas more than anything. Blake spent the afternoon sleeping in our "favorite" recliner next to Ashley's bed. I think it just gave him the peace he has been needing to be close to her for a while. It makes us so proud to watch how well they take care of their baby sister.

Tonight we are going to go to the apartment and decorate our mantel. I am looking forward to watching the kids hang their stockings. I love it that we now have 5 stockings in our family! We are going to play Christmas songs and string popcorn. I am so excited to have this time to spend with Blake and Allie. The only thing that would make it better is if Dave and Ash could be there to help us. Maybe by next Christmas all 5 of us will be in our home hanging our stockings "by the chimney with care" together. I love the thought of that!

We have been given another day with our children, and for that David and I are more than grateful. God has blessed us beyond what we deserve. He continues to take care of us and allow us to be a family. He is holding Ashley for us during this time and although it is difficult that I can not, it gives me great peace to know that He is willing to. Thank you for your love, prayers, encouragement, and kindness you all have shown to our family. Your faithfullness to continue praying for my Ashley truly humbles my heart. We love you all and we wish you all peace during this holiday season. Take care and may He bless you and your families tonight.

Ashley is still consider to be very ill, but she is in stable condition this morning. Her vitals have remained stable throughout last night and into today. The only thing that they have found to be wrong with her is the pnuemonia. The infection from the pnuemonia has caused sepsis which is affecting the amount of her ostomy output. Since the output from the bowel is so much they did the scope yesterday and have not found her to be in rejection. We are so thankful for that. They are now in her room doing a bronch procedure in her lungs. They will take some of the secretions and culture them so that they might find a more specific "bug" to treat. At this point we are using some very powerful, wide ranging anti-biotics on her and they seem to be working. Ashley has not spiked a temperature at all. She is very, very swollen and we are hoping that they will be able to "dry" her out a little. The extra fluid in her body has seeped out of the vessels where it belongs and is collecting in the tissues. This causes her to look very scary. Her face is so large and her little eyes are bulging out of their sockets. This is one of the hardest parts for me.

How wonderful it has been to have my family here with us. Dave and the kids finally arrived around 12:00a.m. They spent some time with Ash and then I took the kids to our apartment. The kids love the apartment and it felt really good to have some type of a "home" to bring them too. We watched the Polar Express together all cuddled up on the couch. We finally decided to all go to bed. My heart was overcome with emotion as I listened to the children pray for their baby sister. Blake was on my left and Allison was on my right. I snuggled down under the covers between them and we poured our hearts out to the Father asking for miracles. When it was my turn to pray the tears flowed freely and by the end we were all crying for our Ashley Kate. I allowed them to ask as many questions as they felt they needed to and then our tears turned to laughter as we just enjoyed the time we had together. Eventually they both fell asleep and I laid between these amazing little people and thanked God for making them mine. I needed them and they needed me. My life is good and I am so blessed.

I am really proud of them both for being so loving and brave. They love Ashley so very much and they like to walk into her room and peek over at her. They do not touch her because of her suppressed immune system, but you can see the love and the joy in their eyes. They are both so very good at scrubbing their hands and wearing masks around her. They do not complain. They are just happy to be near her after being so far away.

God has blessed us this morning. We are together. We are a family. We are here with our Ashley. We will help her get through this. They now pray that she will wake up before it is time for them to go home. This would be our new Christmas miracle. Please join us as we pray for their wish to come true. I know He is big enough to make this happen in her life.

Ashley's vitals are now stabilizing. It has taken all day and a lot of hard work, but it is happening. Her blood pressure is stable. Her heart rate is stable. Her oxygen saturations are stable. Along with her vitals, I feel as though my faith is stabilizing once again.

How disappointed He must be in me each time I begin to panic and plead for her life. Knowing all along that it is His will that must be accomplished in Ashley's life as well as mine. I have spent the better part of today clinging to my faith in Him, but still wanting Him to do with Ashley what I would like to be done. I still pick up this struggle for her life over and over again. I take it to Him, lay it at His feet, and then decide to run back and pick it up to carry this burden all by myself. Why am I not able to say to Him, " Your will be done in her life." I am so frightened that His will may not allow my Ashley to grow up in our home, with our family, as our daughter. I don't want Ashley to die. I want her to live. Is this wrong that I can't say it would be "well with my soul" if He chose to take her back? I have wondered today how He must of felt for His only son to die. Was it "well with His soul?" Did He want to spare Jesus from the death He endured. How was He able to stand by and watch? My heart aches and bleeds for the pain that Ashley goes through. As a parent I want more than anything to keep her from all of this. Death is not something I welcome. I have often heard people talk about looking forward to dying so that they would be in Heaven for all of eternity. I too want to spend my eternity with the Father in the heaven He has prepared, but I don't want to die. I don't want to leave my children. I don't want my children to leave me. Am I wrong for feeling this way? Something inside of me, the "mom" in me, wants to fight to the end. I can't sit back and say that this o.k. with me. It is killing me. I am just so grateful for His forgiveness. I am just so grateful He loves me enough to allow me to be honest with Him. I am just so grateful He is God.

Ashley has pnuemonia in both of her lungs. She has two lobes that have collapsed. They used a very powerful steroid along with many other things like albumin, bi-carbonate, fluids, etc. to bring her back to a more stable condition. The steroid has resulted in high blood sugars so they are now treating her with insulin. She is on four very strong anti-biotics, and they have determined that she does have sepsis. She is swollen beyond recognition, and her tiny face has once again disappeared. I miss her awnry little grin. Her blood gases are slowly improving, and we are making small amounts of progress on her vent settings. I am amazed at how fragile she is, but at the same time I sit back and admire her strength. I can feel God working in her life once again. He is pulling her back, and I am waiting on Him to restore her. Boy, is this a tough road. What a chapter this will be in her story. Just another opportunity to give Him the glory for the miracles He is doing in her life.

I apologize for leaving my last post so abruptly. When they come and get me I go running. I never know if it will be good news or bad. The pictures from her scope look amazing! The bowel is beautiful! Each time I see it I am humbled by the "huge ness" and magnitude of the gift she was given. Father, please give peace and comfort to our precious donor family this season.

This is a tough spot that we find ourselves in today, but even in the toughest of times He brings me strength. Sometimes it comes from His word. Sometimes it comes through prayer. Sometimes it comes because I can just feel Him there with my Ashley. Many times it comes through this journal and our guestbook. Yesterday and today it came from friends. Friends who I feel connected to because they too have a beautiful daughters. They too have watched their beautiful little girls walk this transplant path. They too have learned of the strength that comes from their faith in the one true God. When they hug me I can feel that God has allowed our paths to cross. I am thankful for their prayers, their support, and their friendship that showed up at just the time I needed it. I love that He knows exactly what I need.

Let me say thank you for praying me through another day. I owe you so much more than my gratitude. To those of you who I have not yet met or who I may never meet on this earth, I look forward to our introduction in heaven. You have touched my heart and I love you for loving my little Ashley. I am going to go and rest a while next to this gift He has allowed me to love. She is sleeping on the pink blanket we brought to her the night we first met. How I love this blanket and all it represents to me. It was the first gift we ever gave to our new baby. I love the memory of that first meeting. It warms my heart.

Things have really been moving in our room today. After rounds this morning I spent a while trying to make my head stop spinning. I looked at my sweet Ashley and admired the work He has and is doing in this miracle child of mine. She amazes me with the strength she shows even on the toughest of days. I laid my head on her pillow and whispered my prayers to the Father so that she might hear me praying for her. I hope she can hear me.

We have successfully placed an art line in her femoral artery and we are now able to monitor her blood pressure and blood gases more closely. We are beginning to see improvements in her blood pressure and have been able to wean the dopemine down from 12 to 8. How thankful I am to know that He is always listening to the prayers of His children. Only God is capable of making such changes in Ashley's current state. As I type they are in her room scoping her new bowel. We are praying for a good, healthy biopsy that will show us no signs of rejection. I can't wait to get those "beautiful" pictures. I am counting on that.

Dave and I have decided to fly Blake and Allison out with him tonight. I pray we are making the right decision. We think they need to be with us as we share with them the place that Ash is in at this point. I want to be the one to reassure them that God in complete control of Ashley's life and that He loves her. They are better when we can tackle these things together as a family unit. We need a couple of days to spend together praying for our Ashley and for our family. Please pray that He will give us the right words to explain what is happening. I do not want them to be frightened, and I feel as though this is the best way to keep them from wondering where and why dad disappeared again. I pray He gives them strength.

I have to go. I will post in a moment.

Things have taken a turn for the worse. Dave will be flying in as soon as possible. Ashley is now back in critical condition and every moment is a struggle. Pnuemonia, sepsis, rejection, scopes, bronchs, unstable blood pressures, high heart rates, bad blood gases, these are all of the words being spoken in rounds this morning. She doesn't look good.

I'm desperate. Fighting for another day. I feel as though I have spent a lifetime begging and fighthing for another and another and another. Please God, not now. Not this week. Not when Blake and Allie are coming. Not at Christmas time. Not now, not ever! We need her. We love her. We won't be the same without her. I am praying for Him to turn her back around. We waited so long for her to arrive, and I am not ready for her to leave. My heart is broken. There is no joy to be found at this time.

I hold her hand. I kiss her head. I rub her tiny feet. I beg her to fight as hard as she can. I tell her how much she is loved and valued. I love this little girl. She makes me a better person. She brings us closer to the Lord. She wants to live. She wants to laugh and play. She wants to be here with us. Please God let her stay.

We need your prayers today. Ashley needs your prayers. I am begging for His healing, His mercy, His grace.

Getting warmed up to do the going to Omaha dance.

It's Scary!!

DAVE

Before falling asleep next to Ashley's bed sometime ing the early morning hours we were having a difficult time keeping her blood pressure on the desired mark. Our nurse continued to call the doctor looking for direction as to what she should do. The last call I heard the doctor gave instructions to go as high as 8 on her dopemine drip. Before drifting off I saw her monitor set at the number 6. I prayed and thought to myself I am going to give this one to Him. I eventually fell asleep and only briefly woke through the night when someone would need me to move my chair over so they could come and do whatever. I just woke to find that Ashley's heartrate has climbed to over 170 and her dopemine level is at an 11! I am not sure what is happening. I am confused as to why she requires this much to control her blood pressure. I am not sure but something is changing. Yesterday her dopemine level was down to 3, but for some reason everything is climbing except for her blood pressure. Her extremeties are still warm so I know that she is circulating her blood throughout her body, but I don't understand why she is struggling to maintain an adequate pressure. Please pray for Ash this morning. I am scared and confused. I hope they can come up with some way to control things. Ashley is paralyzed so she can not communicate to us in any way if she is stuggling with pain. This is frightening to me. She is trapped inside of her body and she has no way to tell me if something is wrong. I have to rely on her monitors and so far this morning they aren't looking too good.

Even though there are days when it is hard for me to find understanding I am still aware of how blessed I am in this life. As I kiss my little "gherkin" on her head my heart still leaps with joy every single time. She is amazing and I love every single thing about her. I know that this is a difficult road to be traveling, but without it I would have missed out on so much. Don't misunderstand me, I wish with everything in me that my Ashley was healthy. All I am saying is that as I watch her lay on the bed today I realize that it is because of this road that I have become aware of how blessed I am in this life.

The doctors decided late this afternoon to place Ash on the paralytic drug for her safety. She was way too active and they were afraid she would cause damage to her lungs because of her kicking and swinging. In the morning they have scheduled the ENT doctors to do an evaluation of her vocal chords, esophagus, mouth, tonsils, and laynyx. They will be sending a little camera through her nose to see if they can spot any "trouble" causing areas. This is our new plan. We are going to start at the top and see if we can find anything that may be making it more difficult for her to breathe. At one point during the rounds today they brought up the tracheotomy, but told me they don't know that she will actually need this to be done. More than anything I think they would just like for us to start thinking about the word and trying to absorb it in case it is what she would need to help her breathe. I have chosen not to panic about this. I am just going to trust that He is doing what is best for our Ashley.

This afternoon I was able to visit with Skyler's mom for a while. She and her faith are such a source of strength for me. After listening to her talk about how she just knows that God will be faithful to do what is best for her son I knew that He had brought her in to encourage me. Her friendship is a blessing in my life. Tonight I feel strong. I feel at peace with where we are. Things are not perfect, but He is still in control of Ashley's every breath. He is protecting her and holding her even when I cannot. We have no answers and no real direction, but it is my faith in the One who gave her to me that will sustain me. I am blessed even on the hard days. Ashley is here and she is wonderful and amazing. She is strong and she will come through this. Someday she will tell her story and she will do what He has created her to do. I am blessed to call her mine, and I am blessed to be her mom. I am blessed to be the one she looks to for comfort and help. To be loved by Ashley is a blessing to me. How can I not see that I am truly blessed to be me?

I know that He loves me, but I don't know why.

I know that we will get through today, but I don't yet know how.

I know that She will come back again, but I don't know when.

I know that I need to pray, but I don't know what else to say.

I know that she can't breathe, but I don't know why.

I know that I need to prepare Blake and Allie, but I don't know what to say.

I know that there is a plan, but I can't see what it is.

I know that it is Christmas time, but I don't know how to celebrate.

I know that she wants me to hold her, but I don't know when I can.

I know that my heart breaks again and again, but I don't know when it will heal.

I know that I am thankful for her life, but I don't know if I tell Him enough.

I know that I am not alone, but I don't know why I feel so lonely.

I know that this is a long road, but I don't when it will lead us home.

I know that we have been seeking His will, but I don't know if we have found it.

Again I feel as though I am trying to pick myself up off of the ground and figure out which way I am supposed to go now. This morning I have spent too much time second guessing our decisions. I thought we were seeking His will, but sometimes I wonder if we have listened close enough. I pray that if mistakes were made that His mercy will intercede. It is so very hard to know if we have done the right things. I do not question Him, but I do question myself. Have I done something wrong to cause this road to be so long and so hard. I pray that He will show me if I can change anything inside of me. My heart breaks for my Ashley.

As hard as things have been in our room this morning, it is still harder for others. I am watching my sweet friend prepare to say good-bye to her baby. I can't imagine what she is going through. I watch from a distance and pray for her wishing I could change things for them. My heart is sad that she will not be here to watch grow up with my Ashley. How I wished for them to come back year after year and reunite. How I wished they could become sweet friends. Please pray for baby Chloe and her family. Today and the upcoming holidays will be very hard on them.

Thank you so much for checking on Ashley today. You will never know how much each of you mean to us during this recovery. I know it isn't easy to hear such discouraging reports especially at this time of the season. I apologize if things seem sad all of the time. I hope you can pick through the bad and feel the joy that we experience with our Ashley. She is amazing, and she is so worth it! I love you guys. Take care.

Trish left for 15 minutes to take a shower and change clothes. As she was heading back to the room she noticed a crowd of people outside of Ashley's room. This is not what you want to see when heading back to the room. Ashley is heading in the wrong direction and nobody seems to know why. She has had a very hard morning and things seems to be going downhill. She has thrown up while on the vent this morning. Her oxygen levels and blood pressure again went way to low and nobody seems to know how to help her. The breathing tube was pulled out and put back in again for the 3rd time in 24 hours. She is bleeding in her throat from the damage of the tube going in and out. Nobody can tell us if she aspirated this time. We are so ready for Ash to catch a break. We thought things were heading in the right direction for Christmas but that does not seem to be the case. Our hearts ache for Blake and Allie. They don't know about the last two setbacks as we have elected to not tell them all the ups and downs. It is to hard on their tender hearts. Both of them told me they just want Ashley to be well for Christmas and they would give everything else up for her. Thank you to each one who continues to lift our Ashley and our family up in prayer.

DAVE

Please, please pray for Ashley. Tonight she has been struggling with very low blood pressures. They decided on a "limit" of what they would be comfortable with and she has gone below it. They have been hanging extra fluid trying to give her boluses and it is not working. They will now try hanging Dopamine to attempt to get it to come up to a more stable number. She is not exhibiting any temperature or anything that would hint as to why she is in the state that she is. Once again everyone is confused and doesn't know why she is sick. Thank you for praying.

Let me just say how very much I love to come to our journal and see my sweet Ashley holding on to her daddy's hand. This is one of my favorite photos and I am so grateful to those who made it possible for our journal to be changed into something that just seems so "Ashley". This photograph was taken the morning after Ashley underwent her transplant surgery. There have been many, many days since this picture was taken that the only part of her we have been able to hold was her tiny little hand.

I have always loved David's hands. His hands are the ones that reached out to hold mine on our very first date (please don't share this with Allison). His hands are the ones who held and rocked our three precious babies late into the night. His hands are the ones that have clipped countless numbers of tiny fingernails because I have always been to scared I would hurt the children if I did it. His hands are the ones that applaud our children for all of their efforts in all of their endeavors. His hands are the ones who have brought strength to our family. His hands are the ones who have learned to blow dry our daughter's hair and put it up in pony tails. His hands are the ones who have spent countless hours throwing a baseball to our son so that his dreams might one day come true. His hands are the ones that can make me feel safe in uncertain times. His hands are the ones God has blessed with a talent to be used to support our family. His hands are the ones that I love.

Once again we are in the place where all we can hold are Ashley's hands. She so sweetly grips on to my finger as she lays there sleeping on the ventilator. They have decided not to paralyze her this time, but she is sedated. She has been awake a little this evening and has been reaching out for her picture of Blake and Allison. She grabbed a hold of it with both hands stretched out over the vent. You can see the love and recognition in her eyes as she studies the photogaph. How I pray she will come off of the vent before Christmas. They just want to hold her and I know she wants to hold them back. Only the Father knows where we will be a week from today. Sometimes I wish I could see what He sees, and then there are times where I am content to just sit back and allow Him to do what He will do. I am disappointed by the events of today, but I am trying to remain strong. I did cry while they were placing the tube in Ashley's throat and again when I tried to talk about how Blake and Allie would handle the disappointment of not seeing Ashley off of the vent. I decided to remind myself that His word tells me that the events of today are enough and that I should not worry about what tomorrow will bring. I think I will rest in this tonight because I am so very tired.

I appreciate those of you who continue to journey with us through Ashley's story. Your support and your prayers are what I draw strength from all throughout the day and night. How blessed I am that you have taken the time to love our sweet Ashley. As you pray for Ashley tonight will you please say a prayer for our friend Chloe. She is very sick tonight and my heart breaks over her struggle. Thank you for coming back for more and more and more. Your endurance is inspiring to me. I hope to be sharing a happier piece of Ashley's story with you very soon. He is still God, and He is still bigger than this struggle. I am "expecting a miracle" to take place in her life. Good night and may He bless you.

Ashley has continued her struggle for breath all throughout the night and into the morning. We have now arrived back into the PICU and they are telling me to prepare for Ashley to be back on the ventilator by evening. I could see it coming last night so I am not surprised. I am sad, but not shocked. For some reason Ash can't breathe when she is on the pediatric floor. I know they all think I am crazy, but I know what is happening to her while we are up there. The air is so thick and hot and dry. She went up there on a 1/2 liter of oxygen and within 48 hours she was on 5 liters in her cannula, a mask over her mouth, and blow by! I tried and tried to tell them she could not breathe and now we will be starting over again. I have lost count as to the number of times she has been intubated. On Friday they made the decision to move us up to the floor in a matter of minutes(literally). She was not ready. They were trying to make room for other patients, and I can't help but wish they had just allowed her to stay until she could breathe on her own without the use of oxygen.

All that I had been secretly hoping for is now gone. Ash will not be concious for Christmas. She will not be opening gifts with Blake and Allie. She will not be smiling and giggling as they play with her. She will not wear her Christmas dress and there will not be a family Christmas picture. At this point I am struggling with the thought of them walking into her room and seeing her paralyzed on the ventilator. This is how she was when they left her. Since transplant Blake has not seen her breathing on her own and hasn't even held her. Allie did see her and hold her once when she was not on the tube. They will be sad and they will be disappointed. This is breaking my heart.

I feel as though we are on a "slippery slope". There have not been any easy steps along the way, but there has been a time or two when we made some progress up the slope. Then just when you think you have mastered the slope and are about to make it to the top, you find yourself and all that is with you sliding down and things quickly become out of your control. I am thankful that so far each time we have found ourselves sliding back down the slope that we have felt His hand going before us steering us around the dangerous spots. I am thankful that each time we begin sliding He gives us the strength and determination to dig in and keep climbing. Today we have slipped back down, but tomorrow I am looking forward to picking ourselves up and attempting to climb the slope again. I am just praying it isn't so slippery this time.

Tonight as I lay in my recliner next to my sweet Ashley Kate all is not well. How I long for quiet nights to become a part of her future. Before we came to Omaha our nights were filled with the sounds of feeding pumps and tpn pumps running till morning. Some nights the pumps would alarm continuously for various things and Dave and I would take turns trying to nudge the other out of the bed to correct whatever the matter was. We eventually learned to sleep with hum of the motors acting almost like a lullabye helping us drift off. Through it all you could hear the quiet sounds of our little one breathing.

We had hoped for the noises of our "lullabyes" to become quieter and quieter after her transplant, but unfortunately the sounds of our night time songs are just getting louder. As I sit and type, the alarms are sounding on Ashley's monitors and she is struggling for breath. Each breath is followed by a grunting noise that tells us she is bearing down trying to force air into her lungs. Ashley no longer has the ability to breathe easily. Since her transplant she has struggled to maintain her respiratory status and I am realizing that the quiet sounds of our daughter resting peacefully have become a thing of our past. Ashley is now receiving more than 3 liters of oxygen through the nasal cannula that she wears under her nose. I am not sure what will happen as the night continues. She seems to be struggling more and more. In the back of my mind I fear that we may be heading towards the use of the ventilator once again. I pray that this does not happen to her. Each time we place her on the ventilator her lungs receive more and more damage.

I sit here helpless, not able to ease her distress. I continue to ask that the Father, the one who created her, to just breathe for her. He is the one who breathed life into her tiny body, and I know that with just a single word He is capable of resolving this. I believe this could happen. He is God. The One who gives life. The One who gives second chances. The One who holds my daughter in His Hands. This is not too big for Him.

I am realizing how much I have taken for granted in our life. The ability to breathe peacefully. Ashley can no longer do this. The ability to learn to sit up, or crawl, or walk. These things came so naturally to my Blake and my Allison. Ashley may never learn these things. The opportunity to be part of our large family as it gathers for a holiday. Ashley has never had the chance, and she may never be strong enough to be exposed to so many at the same time.

He has a plan. It is not always easy to watch how it unfolds. He holds her in His hands tonight, and He never sleeps. I know she is safe in his care. I pray that at some point He will ease her struggle and give her peace. Good night and may you rest well. Trish

Ash has been the sleepiest baby today. She took her morning nap at 11:00 and didn't wake up until 6:00. We continued taking her vitals to check and see if something was going on, but nothing seemed out of the ordinary except for how sleepy she was. We took a chest x-ray and have run some more labs and now guess what Ashley is doing, she is sleeping again. I have a feeling we might be up playing all night.

She continues to struggle with her oxygen levels. While she sleeps she sats around 98%, but when she wakes she drops into the 80's. She is still on 2 liters of oxygen and this is keeping us here on the pediatric floor. I am praying that she will be able to breathe room air and get to full feeds by Christmas Eve. She has not had any vomitting today with the increase in her feeds and I am so thankful for that. She is now up to 20ccs and it will take until next Friday to get to 55ccs. As long as she doesn't struggle with the nausea we could possibly make it out of here in time for Christmas.


Tonight while she sleeps I have found myself in a dilemma. Which Christmas movie should I watch? Each channel is showing a different one. Should I choose a classic like "Its a wonderful Life", or something like "Elf", "Home Alone", or "Prancer"? I could just sit back and enjoy "Finding Nemo", but if I choose any of these then I would have to miss out on the 2 hour episode of "Little People, Big World". What am I supposed to do?" I would much rather be in my home listening to carols playing, baking cookies with the kids, wrapping gifts, and snuggling on the couch with my best friend while the candles flicker on the mantle. Instead of watching T.V., I think I will just sneek over to the crib and pick up my sweet Ashley Kate so I can snuggle up with her in our favorite recliner. Maybe I'll read her the Christmas story. I find myself becoming absorbed in the details of His birth more this year than ever before.

Two of our sweet friends have left the hospital and they will be spending a special Christmas with their families. Caroline and Davian have made it out in time Christmas and my heart smiles for them. I feel a sense of emptiness and I find myself a little lonely now that we have left the PICU. I know that sounds silly, but the nurses had become my friends as well as the other families down there. A couple of them stopped by to visit and it sure made me smile!

I am counting the days until the kids arrive. It is now less than a week away! I know that it really won't matter where we are for the holiday. As long Jesus shows up to our celebration then it will be blessed. Traditional or not we will all be together, and that will be my favorite gift of all!

Wow!! We love the new blog look. Thank You so much Susie.

Not a whole lot changed today in rounds. Ashley is still on oxygen and this is what is keeping them from moving into the Co-op. We are continuing to pray that she may be off oxygen and out of the room in time for Christmas. Please be with us in prayer as this truly is the desire of our hearts. Ashley seems to be slowly progressing and we pray that she will progress right out of the hospital soon.

Allie has a little daily calender featuring a picture of a cat for each day of the year. She has been pulling the cats off each day and taping them around her room. She wants a cat room. We had a cat named Oreo who died a while back and Allie would love another one. Well, in December she came across a page in the calender that told her she could submit a picture of her cat for next years calender. She has decided that she needs a cat for Christmas. Trish had told her that maybe for her birthday in February she could get a cat and Allie then explained that she needed one sooner because the deadline for the next calender was in February so she needs a cat for Christmas. We have been putting her off because we don't really think it will be a good idea to have a cat around when Ash first gets home. I think Allie has been praying really hard because a cute little cat has started showing up at our house each day. Allie has been feeding her and talking to her and has named her Mrs. Prissy. The cat has a flea collar on so we know she belongs to someone else and I tried to explain this to Allie. Well next thing I know Allie informs me that she has made a bed for the cat and now Mrs. Prissy is hanging around a lot more. I told Allie the bed would not work, this is not our cat. Well, last night when I got home from work Mrs. Prissy was asleep in the little bed on my front porch. I think God must have provided a cat for Allie to love. I hope there is not another little girl in our neighborhood praying for her cat to come home.

To my neighbors: If any of you are missing a cat please don't blame me. I am not trying to steal your cat.

DAVE

I love gifts! I love to give gifts, I love to get gifts, everyone already knows how much I love to wrap gifts. I hope this doesn't make me sound like a shallow person. I just know that a well planned gift, one that speaks to someones heart can really make an impact on a life. The key to giving a good gift is listening. It didn't take long for us to figure out what my love language was. You guessed it, "gift giving". Some of my favorite Bible verses talk all about gifts. "Every good GIFT and every perfect GIFT comes from above", "Thanks be to God for His indescribable GIFTS!" "..it is the GIFT of God, not of works lest any man should boast." I really believe there is nothing wrong with giving and receiving gifts. The Father Himself is a giver of gifts to those He loves.

Today as I went over to check the mail I received a package that was sent from J.A.C. What does that stand for you may be asking yourself? Trust me when I tell you I knew exactly who it was from. James Avery Craftsmen. My favorite jeweler! When I opened the little box found inside of the envelope my heart began to smile. He listened! (Trust me when I tell you that he hasn't always heard me when I tell him what I would like to have. One year for my birthday I received a pair of wind shield wipers from him. Can you believe that?) Dave did it! Inside of the box was the most beautiful silver bracelet I have ever seen. Attached to the bracelet were two charms. The first charm was a cross, and the second charm was a baby angel. On the back of the angel charm was engraved 9-26-06. Each charm represents a gift that has been given to my family. The first charm represents the most important gift in our lives. The gift of Jesus. His sacrifice on the cross gave us the gift of eternal life and a relationship with the Father for all eternity. The second charm represents the gift of life that was given to our Ashley. Both gifts give life. Both gifts came from the Father. Both gifts were undeserved, but given from a heart filled with love and mercy. Both gifts gave a us a second chance. If I never receive another gift in my life I would not complain. God has given to me more than I could have ever hoped for.

The gifts that I cherish the most are the ones that come from the heart. The ones who make it into my heart. Jesus. Salvation. Forgiveness. My husband. My son. My daughter Allison. My daughter Ashley. My family. My friends. Our donor family. My sisters. My church. My list could go on and on. This journal has become a gift I would have never expected. The outpouring of love and concern from all over the world has touched me and made it into my heart. Each one of you who come to Ashley's story has made it into my heart. The prayers and encouragement from each of you has become a treasured gift. I know this gift comes from your heart. Thank you for giving to me and to my family. Your "gifts" mean so very much to us.

Ashley and I have now settled in to our room on the pediatric floor. I wish we could have skipped this floor again but I guess that was not in the plan. I am so thankful to be out of the open bay and in a private room. I was praying that God had something different in store for us, and He did! Ashley has been asleep since we arrived up here this morning and she just now woke up to play for a while. Last night it was difficult to sleep because of the lights and the noise out in the hall. Tonight will be much better. Unfortunately there is not a thermostat in our room or on the floor to control the temperatures. We are baking! If Ash and I had some cookie dough we could start decorating early! It is so very hot up here that it has Ashley and I dreaming of a white Christmas. We are hoping for snow.

Living in Texas we don't get to see snow that often. Blake and Allison have only seen real snow 2 or 3 times in their lives. One of those times it was actually Christmas and it was the most beautiful snow I had ever seen. We had gone to spend the holiday with my dad and the day after we arrived it began to snow, and snow, and snow. The kids were so happy. The snow was the most beautiful shade of white and it blanketed everything around us. I don't remember how much it actually snowed that holiday, but I do remember that it was so deep that it came all the way up to Blake's knees. We spent days playing, sledding, building snowmen, and making snow angels. On Christmas Eve it was so very cold outside. The snow continued to fall and it was getting deeper and deeper. Blake was begging to go outside. I was not a fan of this idea because it was late and so very cold. The next thing I know Dave came into the room carrying their coats, hats, scarves, and gloves. I couldn't believe he was actually going to take our son out into the cold night air. Now as I think back over what I witnessed that night I am so very thankful that he did. Dave was ready to make a memory with Blake that we would treasure forever. The smile on Blake's face as he bundled himself up as warmly as he could was priceless! I have never seen him so excited. I sat at the sliding glass doors and watched as the two of them had the time of their lives. They made their way to the back corner of the yard and I watched them begin to play. It was dark and it was cold and it was snowing, but they didn't care. Blake would take off "running" as fast as he could in the knee deep snow across the yard and Dave would wait until he made it about half way before he would come running after him. Once he caught up with Blake he would tackle him to the ground and they would fall and begin to roll laughing and giggling as hard as they could. When they got up I would watch as Dave took off across the yard and then Blake would chase him until he could "tackle" his dad into the snow. This went on for a very long time. As I sat inside the warm house my heart was overflowing with happiness. How much I loved those two"kids". Blake was having the time of his life and his Dad was making it possible. I made up my mind to remember this night forever. This is a memory that I never want to forget. It tops my list of my favorite Christmas memories.

This Christmas we find ourselves hoping for snow. Spending it here in Nebraska we actually might have a chance. Even if we don't get the snow we are still hoping to make memories that will last a lifetime. Being all together would really make this one to be remembered. I find myself secretly hoping that the Father might have a plan that would allow our Ashley to be "home" with us for Christmas. Even if she is not, this one will always be remembered as special because He has allowed her to still be here.

The girls just moved up to the Pediatric floor. They were put on "overflow" status because there are more critically ill kids needing the ICU. Trish has requested that the get to go to the CO-OP (the nice little apts) but they won't let her just yet. Ashley's output has doubled in the last 24 hours and they want to keep an eye on that. Because of the output they are not going to increase her feeds yet. She is getting 15cc/hour and our goal is 55cc/hour. Ash is still on a small amount of oxygen and that is another thing holding her back. One bit of good news is that they have moved back into a private room with 4 walls and a door. This one even has a bathroom with a door. Thanks for checking on Ash.

DAVE

Tonight Dave took Allie to her tumbling class. On the way home she struck up a very difficult conversation with him. It went something like this.

"Daddy"

"Yes, Allie"

"What happened to Ashley?"

"What do you mean what happened to Ashley?"

"You know. What happened to her when she was born."

"Oh, she was born too early and because of that the blood vessels to her intestine didn't develop all the way. So when they tried to feed her some of her intestine died because it didn't have enough blood going to it, and then they had to take it out."

"Is that why she needed to get a transplant?"

"Yes."

"Daddy, what happened to the person who gave Ashley the transplant?" Did they die?"

"Yes, Allie they did."

"Daddy"

"Yes, Allie"

"Is Ashley going to die too?"

"I don't know Allie, but I hope she doesn't. I think she has made it through the hard part, and that she is starting to get better."

"Daddy"

"Yes, Allie"

"What does B..U..F..F..E..T.. spell?"

"That spells buffet."

"Daddy"

"Yes, Allie"

"Then why does it have a T.. in it?"

He didn't know how to answer the last question. The toughest thing about listening to David recite this conversation to me tonight was the realization that even though Blake and Allie seem to be doing so well with what has happened, they still are thinking that their baby sister could die. Even tougher still is the fact that we can't assure them that Ashley will not. Their hearts are so tiny and so tender, but yet they must carry such a heavy burden every day of their lives. How I wish I could promise them that their sweet Ashley Kate will not die. That she will come home some day. That she will grow up with them. If only I knew the answer to that question, and if only Dave could explain why there is a silent T.. on the end of the word "buffet". I guess there are some things we will never know.

I am compelled to come and type another plea for prayers for 2 of Ashleys friends. Their names are Chloe and Kiley. These precious baby girls are struggling to get on top of their recoveries post transplant. Chloe was actually transplanted the week before my Ashley, and Kiley was just over a month ago. They are beautiful and sweet and they have very sweet mommies who love them so much. Both of the moms are so much younger than I am and these little girls are their first children. There are days when I feel as though I can't keep doing this and there are days when I feel strong and confident. I know how difficult this journey is as I watch my Ashley fight to live. I have often wondered if I would be strong enough to go through this with grace and determination if it happened at any other time in my life. I don't know how these young moms have the abilities they do and the strength that it takes to continue at their ages. I am proud of them and I am proud to call them my friends.

I know in my heart that God Himself places our children in our families. These mommies were handpicked by the Father to parent these two little girls. They can do this. He will give them strength. Please remember to pray not only for the girls but also for their moms. I would be more than grateful.

Ash has had a wonderful day. She has played with her box of "Tic Tacs"(they make a great rattle, her Nan taught her this) for hours today. She loves the shaking sound they make. We have enjoyed time together as we rocked and sang. This little one has definitely stolen my heart and there isn't a day go by that I don't find something absolutely amazing about my daughter. I love her so very much. Unfortunately she will be receiving 3 very painful shots in just a few minutes. This breaks my heart for her. I look forward to the day when we will live "needle free". What a celebration that will be.

Only 1 more week until I get to spend priceless time with my Blake and Allison. I am more than excited about spending the Christmas holiday all together. This will be the first time all 5 of us have been together since Sept. 29th. We are looking forward to celebrating His birth. Thank you for praying. I know that you will. You have proven time and time again that you are faithful to go to the Father on our behalf, and I know that you will approach Him for Chloe and Kiley as well. You are loved and you are appreciated. God Bless.

Well it is moving day around the PICU and Ash and I have had to give up our room for another little patient who needs to be in isolation. It doesn't bother me to have to make way for a sicker patient, but this new open bay room will be very difficult for Ash and I to live in. It has no door only a cutain to separate us from the hall way and it is directly across from a very busy nursing station. This is going to cause problems for Ashley when it becomes time to rest. There is absolutely no privacy and I am not sure how this is going to work for us over the Christmas holiday. Once Dave and the kids come there will not be any room to enjoy visiting with each other. I am just trying to believe that maybe God has something better in store for us. Maybe He has another plan and this is only temporary.

This morning Ashley is showing small signs of being uncomfortable with her feeds. They have only made it up to 15ccs per hour and she is already fussing and becoming nauseated. This is making me nervous. If Ash can't eat, then we can't leave this place. I pray that all will be resolved and that she will not require further surgical intervention. There is an endoscope procedure scheduled on Monday afternoon which will require Ashley to be on the ventilator once again. I am praying that she will become more comfortable with the increases over the weekend and we will be able to cancel this procedure. I hope!

As Christmas day approaches I am trying to fight off the saddness of realizing that we will actually be spending it here in the hospital. I had to take Ashley's winter wonderland down because of the move, so I hung her new PINK stocking (that was sent to her today from a family in Alabama! Thanks we loved the package) and some of her icicles on the end of her crib. I am still determined to celebrate this holiday with Ash.

Please join us in praying for Ashley to be able to tolerate her feedings as they increase the volumes. She has got to eat and at this point it has to be done through a tube. My prayer is for progress without anymore bumps in the road. Thank you to all of you who continually come to visit Ashley's story. Your time and your prayers are appreciated. May He bless you today as you continue to anticipate the celebration of His birth!

Last night Blake, Allie and I were invited to go Christmas caroling with a group of kids from our church. We went to sing to a couple of older "shut ins." For those of you who are worried that my singing would hurt the old ladies ears you can rest assured that I stood in the back and just barely sang. At the conclusion of the last song at the last house this sweet little old lady told the kids to let their parents know that they had caroled to a 90 year old lady and then with a tear in her eye she turned to shut the door. What a blessing it was for me and everyone else there to see how God had used these children to really make some one's day. One thing I have learned from Ashley's Story is that God can take a little caring and go a very long way. I think Ash's story has taught me to look harder for the good in others and to try to find more opportunities to be a blessing to others. Just as each of you are to us when you post comments or tell us you are praying for Ash. Thank you for allowing God to use you to minister to us. I encourage you to try and look for ways to be a blessing to others and you will receive so much more in return.

DAVE

So many times in my life I have been guilty of telling someone that I would pray for them and then allowing them to slip my mind or disappear off of my prayer list. My intent was sincere, and my heart was pure when I told them I would, but life gets busy and things get in the way.

Since Ashley's birth, David and I both have learned just how valuable it is to pray for someone. It has literally transformed our lives. The prayers of the people who learn of Ashley's story have made such a difference in the way it has played out. Prayer is a gift. It is an honor to be asked to pray for someone. It is rewarding to be allowed to go to the One who created it all and talk to Him as a friend.

Tonight I am comforted by the progress I see in Ashley this week. My heart is resting well when I lay down to sleep and I feel at peace. I am not naive in thinking that all trouble is behind us. Ashley has NO immune system, therefore she is at great risk of catching anything that comes across our path, but I still feel encouraged. He is working in her life.

I would like to ask you all to pray for some very precious children. They are our transplant friends, and they are struggling at this point in their recoveries. I love these little girls not because I know them well or because I am close friends of their families, but because we are forever connected because of the time spent here together in the ICU. Kiley and Chloe are just as beautiful as my Ashley. They are loved by mommies just as Ashley is loved by hers. The road to recovery is very long and sometimes it is scary and painful. I don't know all of the details to their stories and I won't share the ones I do know out of respect for their families, but they need our prayers. They too were created by the same loving Father who created our Ashley Kate. They too have a plan and a purpose that He has laid out for them. He loves them, so I love them. Please add their names to your prayer lists this week. You will be making a difference in the life of not one little girl but three.

Thank you for loving Him enough to love others. It means more to us than you will ever know. Your prayers that you lift up to our Father are being heard and He is faithfully answering each one of them. Your time is not in vain. You will become stronger in your faith, and He will begin to "show you great and mighty things thou knowest not." We love you and are thanking Him for sending you to Ashley's Story. Good night and God Bless.

Today we are making teeny, tiny baby steps out of the PICU. Ashley has started her feeds once again and she has made it up to 10ccs per hour without showing any signs of vomitting. We are feeling cautiously optimistic tonight that she might be able to tolerate it this time. This morning there was talk of moving us out of the PICU but that did not happen. The surgeon would like to give Ash a couple more days down here so they can keep a good eye on her. I am in full agreement with this decision. I do not want to move too quickly at this point.

Ashley has had a wonderful day and she has been happily playing all day. She had a very good session with her physical therapist this evening. It was her best since we arrived 11 weeks ago. I was very encouraged by her participation and sweet attitude. This is something we have not seen exhibited towards her therapist in some time now. I think Ash is starting to feel like her old self once again and I am so very thankful to see it.

I will have to go because Santa has just entered Ashley's room and he is ringing his jingle bells. She was sleeping, but I am afraid that her nap has just ended. I will come back once I have successfully chased the scary man in the red suit out of her room. Take care, Trish

"Its all in the presentation!" Thats my motto. I love to wrap packages. It doesn't matter what occasion I just love to prepare the package. At Christmas time all of our packages are color coordinated under the tree. I usually choose 3 different rolls of wrap and make sure they all "fit" within our themed country Christmas style. All of the gifts match the decor in the house and on the tree. I love to make personal name tags as well. The store bought ones just don't present the package with the right effect under our tree. I will be the first to admit that I am a little obsessive when it comes to wrapping the gifts. To be perfectly honest with you the year that Christmas took place at my house my sisters brought their gifts unwrapped because they knew I would want all of the packages to match and they didn't want me to have to re-wrap theirs. (I told you my motto is that "its all in the presentation." I know this is shameful!) In my defense it sure makes for beautiful pictures, but is that any excuse for my behavior?

One of the things I know that God has taught me through Ashley's Story is that it truly "is not all in the presentation." Take me for example. If I were a package to be placed under His tree this Christmas here is what you might see in the presentation. The package seems to be bulging a little on the sides, the paper is a little worn and now wrinkled, and the tag that was handmade by the Father Himself is barely hanging on most days. The recipient of this gift may not be too excited to receive such a tattered package, but thankfully this is not just any body's package. This package is going to be presented to the King, and it is a very special day. I know that when He takes this package into His hands that it will be valued. It will be treasured. It will be loved, and it will be accepted no matter how it was presented to Him. He will love what He finds on the inside of this package. Jesus will look past the presentation and He will see what is deep inside. He will find a heart that has received Him. He will find a heart that has been forgiven. He will find a heart that although it is not perfect, He will look on it with compassion because it loves Him.

How wonderful for me to have learned this season that it is not all about the way things are presented. So many missed out on His birth and His life because they could not see past the presentation. How this breaks my heart. I can now look past the outside and search for the inside of a package (or person). I now try to see a person through the eyes of the One who created them. I look for the heart that is found deep inside of them. I find myself searching for the goodness in them, no matter what they may have presented to me. I have learned to value people, because He does. It only takes a smile or a kind word or gesture to reach most people. The hardest of hearts I have watched soften when they have come in contact with Ashley's story. It is amazing that He is using this tiny little girl (who many could not see past the way she was presented) to change my heart. He is using my Ashley to teach me that it is not "all about the presentation". There is so much more. It is about what you find inside of the package. It is about the soul that He valued enough to be born as a baby in a stable of all places. It is about the soul that He was willing to endure so much for. It is about learning to love the inside of the "package"(or person), the way that He does.

I still love a perfectly presented package under the Christmas tree, but I am learning that even if it doesn't coordinate with my theme it could still be something very special. I am learning to be eager in searching for those not so perfectly presented packages and touch them with His love. What a gift!

Well after staying up with Ash for more than 24 hours after she came off of the ventilator, last night they gave her a little "sleepy night time cocktail". It worked beautifully! Ashley was fast asleep by 10:00p.m. and did not stir even one time through the night. She and I both slept until 6:00 this morning. We then made the exciting move back into a crib. How wonderful it is to look over at her and see her happily playing and peacefully resting in a bed made for a baby. She played for a couple of hours and then decided to drift back to sleep. She slept for another 8 hours! She was completely exhausted and needed to catch up on her beauty sleep. Our nurse today was a little sad because Ash slept through her entire shift and this was the first time she had been given the opportunity to take care of her.

Once Ash finally decided to wake up, she was greeted with a wonderful surprise. If you know Ashley then you could probably guess what her favorite thing to play with is. Thats right, a Balloon! Not just any balloon, but a balloon bigger than she is. It is so cute and she was so happy. She began grunting and reaching and making the "B,B,B" sound. She played with it for over an hour. What a smile it brought to my heart to see her feeling so good and having so much fun. After playing with her balloon she layed back on her pillow and began to play peek-a-boo with me between the bars of her crib. We giggled at each other as she would poke her fingers through the bars and I would snatch them up with my kisses. I could play with this girl forever and never grow tired. What a memory we made together.

Once again my Blake has touched my heart so deeply. Tonight as I tried to get him to tell me something, anything that he would like to have for Christmas he finally said he guessed he might like an Ipod or something like that. Then he quickly changed his mind and said to me, "Mom, what I would really like more than anything else is for Ashley to say, "Bubba" and remember me when I walk into her room next week." I love this kid! Only 9 more days until they arrive to spend Christmas with us.

Allie is so happy because her week is filled with wonderful and exciting things to do. She will be very busy attending cheerleading practices, tumbling, carolling with her class at church, Christmas parties, and so much more. I would like to announce that after cheering competitively for 3 years, her squad finally took 1st place at competition this weekend. You could actually here her smiling over the phone! When she called me she said, "Mom, this is what we have been waiting for my whole life!" I am more than proud and a little sad that I missed it. She has grown up so much while I have been away. I can't wait to catch up with her next week.

Today we have been given another day with our Ashley Kate and I know what a gift each day with her is. How blessed we are to have been chosen to be her parents. I thank the Father all throughout the day for smiling down on me. Thanks for checking on us today. We appreciate all of your prayers for our family during this time we must spend apart. I look forward to the day when I can share with you all that we are moving back home to Texas. I have no idea when that day will come, I just have learned to "Expect a Miracle" and I believe it is going to happen. Good night and may God Bless you guys.

Yesterday I shared with you how I had successfully built Ashley a "Winter Wonderland" to hang above her bed. The thing I did not share with you is how long it took me to figure out how to make our snowflakes. You would think that this is a simple task, but each one I made came out looking like a square with triangles cut out of it. I was becoming frustrated as I searched my pile of papers for the perfect snowflake. Eventually I resigned myself to the fact that at 30 something years old I must have forgotten how to make them so I just hung up my "squares". Later in the afternoon the "squareness" of my snowflakes began to really bother me. So I decided to cut my paper into circles before notching out the triangle shapes. This resulted in a slight improvement, and I became somewhat satisfied that now I at least had two different types of snowflakes falling over Ash's bed. This morning as Ashley struggled to reach the snow falling overhead I decided to give her a piece of her own paper. Guess what? After a few minutes I looked over at her and saw a lovely snowflake created with absolutely no purpose in mind. Ashley's snowflake looked so much nicer than the ones I had spent so much time trying to design. It was crumply and uneven. It was torn and tattered. It was wet(from her chewing on the paper). It was PERFECT! I have proudly displayed her lovely creation in the center of our wonderland and when she looks up to see HER snowflake she now ooohs and aaahs at how wonderful it is. She is a snowflake "Picasso"! I am so proud of her.

As I recall this story I just shake my head at myself and realize that once again the Father has used my little Ashley to show me a truth and teach me a lesson. I continue to try and plan, shape, and control this journey that we are on with Ashley. Just as I struggled to make the perfect snowflake yesterday, I find myself struggling to accept the bumps in our road. What I need to do is just wake up every day with no expectation in mind except for the one that allows Him to do His will in my life and in the life of my Ashley. Ashley did not expect to create a lovely snowflake when I handed her the piece of paper. She just accepted what she was given and was thankful to have been given it. She enjoyed every inch of that sheet of paper until it seemed as though there was no joy left to be found from her crumply mess of paper, until Mommy picked it up and hung it above her head. Now she had a different perspective as she looked at her paper. She began to enjoy it all over again. The ooohs and aaaahs were priceless, as was her creation.

I am looking back over the last 11 weeks with a different perspective. I can see the blessings that have been hidden on the other side of each bump along the way. I can now oooh and aaah at what He has done in our lives through each day of this journey. Today I am not going to "expect" anything. I am just going to see what He hands me and I am going to embrace it for all that is in it. Then once I think I am finished with it, I hope to pick it up once more and find something else that maybe I had missed. Isn't it amazing what my little 2lb12oz "pickle" can teach me. My prayer for all of you today is that you too will find your own "winter wonderland" and be able to embrace it with all that you have. Enjoy your family and your kiddos. It really doesn't matter if any of what you expect turns out the way you have perfectly planned it. Just love every moment, every smile, every giggle, every soggy snowflake that He gives to you this holday season and stand back for just a moment so you can all oooh and aaah over them. I love you guys. Thanks for praying us along. God bless. Trish

I just got off the phone with my Blake and my Allison. They were both already tucked into bed. How tired and sleepy they sounded as we talked. Allie was sad, but refused to tell my why because she said she didn't want to make me sad. She misses us, and her little heart is hurting because of it. I told her it would only be 10 more days until she came to visit and she replied, "That is way too long to wait." I am looking forward to spending some wonderful time together with that little lady. I hope to bake cookies, build gingerbread houses, make some jewelry, decorate our Christmas tree, take her shopping, and so much more. My list is growing and growing. I am counting the days until I can brush her hair and lay next to her in the bed drawing pictures on her back with my fingers. I miss her so very much.

Blake told me how hard he is trying to do things with Allie so that she will not think about missing me and Ashley. He is very grown up and carries this burden so well. I look forward to hanging out with them. As we talked I began to smile as I realized the responsibility he feels towards protecting the girls. He knows that God has placed him in a very important place in our family. Not only is he the oldest child, but God gave him 2 sisters to take care of. We have talked many, many times about how much God must trust him to allow him to watch over Allie and Ashley. Tonight Dave shared with me a precious conversation he had with Blake before going to bed. They were washing their hands at the sink and they were using one of the bottles of soap that I bought from Bath and Body Works before I left home. As Blake rubbed the soap on his hands he asked his dad if he could just go to bed without rinsing it off. Dave said, "Why would you want to do that?" and Blake replied, "It just smells like my mom, and I don't want to wash it off yet." My eyes filled with tears when he told me. My son misses me and wants to feel close to me. My heart broke for the lonliness he must feel at this time in his life, but it also smiled that he would want to "smell" me as he drifted off to sleep. This is a memory that I will treasure for my lifetime!

I am blessed. Blessed beyond anything I could have ever asked for or imagined. I have a son who loves me and misses me. I have a daughter who is so concerned about my feelings that she holds on to hers and fights back her tears. I have a baby who depends on me to help her make it home to be reunited with her big brother and big sister. I have a husband who although he is tired manages to hold us all together, and I have a Father in Heaven who is with me every step of the way. He is loving us, protecting us, taking care of us, providing for us, and forgiving us. Tonight as I lay on the bed singing songs about snowflakes to my Ashley and watching them turn above our heads I am reminded that this life I have been given is a good one. It is one that I would never want to trade. I love to call home and have night time conversations with my family. It makes me thankful and it makes me count the blessings He has bestowed on me.

Our sweet Ashley has not been able to sleep for about 24 hours now. She is struggling from withdraws. She is very content and happy, not like the last time. She is just not able to rest. Her tiny hands and arms are jittery and shaky. She is so "glassy eyed" from a lack of sleep. I feel so bad for her. She just stares at the ceiling, so I have tried to make it more enjoyable for her to look at. First, I took the flashlight and turned off all of the lights. Then I climbed onto the bed with her and we played the flash light game. She really enjoyed trying to reach out and catch the light, but her arms just weren't long enough to reach it. Next, I decided to make shadow puppets for her. Now you can't make puppies on the ceiling if they don't bark, so after a few minutes of "barking" to entertain my Ashley the nurses started poking their heads in to see what was going on. After our puppet session I had a brilliant idea. We were promised snow when we got to Nebraska and they have yet to really deliver it so I made Ashley her very own winter wonderland. It is lovely! I took paper and scissors and cut out different sized snowflakes to hang. Then I stole the silver icicles off of her tree and hung them on the ceiling as well. You would be amazed at the things you can do with hospital tape! They are all hung at different levels and it looks great. Ashley loves it! The only problem I can find with my new winter wonderland is that when I lean over to change diapers my hair gets caught on the tape. ( I hope the hairs I am losing are the gray ones) Other than that we are really enjoying it.

Guess who came to visit today? Santa! Ashley had no idea what to think of this chubbly little man all dressed in red. She just stared. No waving hello to him. He came in with a gift for her and posed next to her bed for a picture. (I never would have thought that her first and second visit with Santa would take place in a hospital bed!

All in all we have had a very enjoyable afternoon. We are playing Christmas carols and reading stories about Jesus. Even though she won't remember today because of the meds they are giving to her, we have tried to make it special. I'll be remembering it forever. I hope to take a little video of our winter wonderland to share with you all when Dave and the kids come next week. Can you believe it is only 10 days away? I am so excited!

Ash looks good. We are not going to feed her for a few more days. The doctors want to make sure her lungs recover well after this last bought with pnuemonia. No one really knows what is going to happen when we try feeding her again. We are just praying that the vomitting and asperating won't return. I am feeling optimistic about where we are right now. Thank you all for visiting Ashley's story today. I love knowing that so many of you love our Ashley and are praying for her everyday. You mean so very much to us.

This morning I have been given the sweetest moments spent with my tiny Ashley Kate. She is so very beautiful all tucked snugly into a pink and white pair of jammies. All of her tiny features have returned and I have enjoyed studying them this morning. I love her fingers! All ten of them! They are so petite and beautifully designed. There is nothing about Ash that I do not love. From every wonderful eyelash to all of her "battle"scars they each tell their own piece of her story. As I sit and rock this precious bundle of baby girl, I think of how wonderfully blessed I am to be a mommy. Blake and Allie are now to grown up to refer to me as anything other than "Mom", but I remember a time when they too called me that wonderful word. Of all the things in the world I could have grown up to be if I could choose again I would still choose to be Blake, Allie, and Ashley's mom. There is no greater joy! I love my children and even if they weren't mine I would still want to know them. God has been so abundantly good to me.


Last night as I listened to the events unfold that surrounded me my heart ached to hold my son. I was forced to hear the crys of a broken hearted family as they lost in a most violent way their precious son. How my heart cried for them and I found myself begging God to please comfort them during those moments. I so badly wanted to be at home with all 3 of my children tucked safely into their beds. Today I know they must feel as though it can't be real. She continually wailed, "Not my son, not my son". How I wish it had not been her son. How grateful I was that it was not mine. How badly I wished that it would never, ever be any mother's son who would lose his life. My heart is heavy with grief that I feel for a family who I do not know, and who I will never meet. My life will forever be changed as a result of last nights events. I will pray for this family and for peace in their home and in their hearts from now on. I will treasure even more each and every moment I am given to spend with my children, because I realize we are not promised a life time with them. Is this one of the reasons Ash and I are still here? What did He intend for me to learn from this witnessing this? Can I change the world around me for Him?

Today I am left searching for what I need to be doing. I am praising Him for creating my son and my daughters. I am thanking Him for allowing me to be their mom. I am looking for what I am to do with this life He has given to me. How His heart must have broken as He looked on at the events of last night. He loved that child as much as He loves mine. In the middle of my sweet moments I am still searching for ways that He can use me here in this place, and I am thanking Him for allowing me to be here with my Ashley.

Last Sunday it was the quietness of the night that I dreaded. It was one thing to watch Ashley be absent from us and to wonder if she would ever return to us during the daylight, but night was approaching and I had no desire for it to arrive. During the day there were distractions, phone calls, noises, visits with Dave and so many other things going on. At night I would retreat to our room alone and lay down alone and attempt to rest. As soon as I would turn off the lights and close my eyes my prayers would begin. Not just any prayer, but a prayer of desperation and pleading. The fears that I held inside of my heart during the daylight would come tumbling out of my mouth as I talked to the Lord. How I hated being in the room alone without Dave. How I hated not having Ashley there with me to tuck into that crib. How I hated being 700 miles away from Blake and Allie. How I hated not knowing the answers to so many of my question. The nights were long last weekend, but as I look back I can see that I was not alone. In the room during the night He was there. While I prayed and pleaded He was listening. While I wondered if she would live or die He was there sustaining her tiny life. In that bed as I struggled to close my eyes He was giving me rest.

Tonight it has been a very quiet night. After such a busy day for my Ashley, I have welcomed the night to come. How different it feels to me to see her laying there in the bed tonight. She does not struggle for breath. She is not absent from me. Ashley is peaceful and not fighting to live through another night. He holds her tonight just as He did last Sunday, but something is different. I don't know why we had to live through such a tough week. I don't know why she had to become so sick. I don't know a lot of things, but one thing I do know is that we are stronger because of it. Dave and I have made it through another tough time together, and we are closer friends because of it. Ashley has proven and shown us all once again that she desires to live this life that He has given to her. I spent more time in prayer last weekend and I know it strengthened my walk with the Father. We are still growing and learning every day and I know He is using my daughter to teach us the lessons (although many of them are hard and painful) that He wants us to know.

It is a quiet night in our room at the PICU. My precious Ashley lays sleeping and breathing so peacefully in her bed. Outside the door of our room it is chaos. It reminds me that we are not the only parents who hurt for their children. It shows me that although I am tucked away inside the walls of this hospital that the world still goes on. Tonight I am thanking God for the quietness of the night He has granted to me and to my Ashley, and I am praying for those whose journeys are just beginning. I pray they have faith in the One who will help them through their walk here in the PICU. I pray that they know Him. I pray for their children and I pray for mine.

Ashley passed her tests today and she was able to be taken off of the ventilator at 4:40p.m. She has been resting ever since. I think she was worn out after proving herself to everyone throughout the day. I am thanking God for allowing her to breathe on her own once again! She is on 2 liters of oxygen just to help her coast a little tonight, but she looks wonderful. She is still receiving her blood transfusion. I haven't held her yet because I wanted to make sure she would stay calm enough to show everyone how strong she is. It has been 10 days since I have held her, and I am anxiously waiting for her to wake up so I can. She will actually get a good bath tonight and a pair of her pink jammies to wear. I am so excited!

I am so very thankful that she is with us and that she is making progress. I am so blessed to be in this place with her. I love Ash with all my heart and I am looking forward to the day when she will be stable enough to move back home. We are blessed by this little girl every single day. I am growing and changing and learning what He wants to teach me though my youngest child. There have been days when I have felt absolute fear and desperation, and then there are days when I felt hopeful and full of joy. Through each of these days one thing that has been a constant is the love and the strength that I feel from the Father. He has not left us alone as we travel through her story. He loves us and I am sure of that. I don't deserve it, but I am grateful for it!

Tonight there are stories I would love to share with you of several precious children who share this floor with my Ashley. I will not go into their private details, but I will ask you to add their names to your prayer lists. They are hurting and struggling and I have grown to love them from across the hall as I watch and listen to their daily battles. Please pray for Kiley, Chloe, Skyler, and Jenny. They are each in their own fight to live this life and their parents love them as deeply as I love my children and you love yours. I will never understand the purpose in the struggles they must endure, but I know how much He loves them all. Thank you for caring enough to pray for Ashley and her friends.

Ashley had a wonderful night of play and rest. She finally gave up on fighting the ventilator and began to just play around with it. She managed to disconnect it a couple of times last night. She likes to pull on the "pretty" blue tubes and shake the part that they suction her with.(I can't remember what it is called). I think she looks beautiful this morning and she is full of personality. She started reaching up to anyone who approaches her bed trying to entice them with her chubby hands and rosy cheeks to pick her up. She is waving and clapping over the top of the tube. She really is adorable and I think she has managed to steal a few more hearts over the weekend. She has convinced the nurses that when they approach her bed with supplies they need to bring extras so she may have a set to play with while they work. They are happy to supply her with extra pink sponges, syringes, tubing, alcohol wipes, etc. to keep her busy. She is such a good little helper. This morning she reached up and stole the nurses glasses off of her face. It made me giggle inside to see her being so awnry. If you get too close to her she will "claw" off your face and pull your hair. I will be thankful when her daddy arrives so he can give her a manicure. He loves to do the girls nails for them. (Allie even convinced him to let her paint his toenails pink over the summer. He had no idea I was out of remover and actually ended up wearing his flip flops and pink toenails to one of Blake's baseball games by accident! It takes a real man to go through that for his girls. Please don't let him know I told you all.)

In order to come off of the ventilator Ashley must first pass a couple of tests. They will be turning off her drips. One of the doctors this morning commented that he thinks they must have made a mistake and placed water in her drips instead of medications. She is awake and alert and ready to play when she should be "snowed" with the amount of medication she is on. Once they turn off the sedation she must stay calm enough to keep her sats in the 90s proving that she can and will breath on her own. Test number two will consist of placing her prone while she is on the vent with no sedation and allowing the RT to work some therapy on her lower left lobe. Ash must lay there and allow this to take place without dropping her sats. This one seems tough to me because I am afraid she will begin to panic because of the tube in her mouth. If she has successfully passed these tests then they plan on giving her a blood transfusion to top off her tank giving her the best possible amount of energy to breathe on her own again. Sometime by late afternoon Ash will hopefully be off of the vent. These are big goals for the day, but I know that if it is inside of His will for her to be independant of the ventilator then it will be possible.

As I look at my Ashley today I feel confident that she is back and continues to get stronger every day. Last weekend was the hardest thing I think we have ever faced with Ash, but He was so very faithful and brought her through. My heart is overwhelmed when I think of the goodness of the Lord. He continues to take care of her and continues to give us the strength we need to keep going. I don't know why He loves us so much, but I am so glad that He does. Thank you for praying for my Ashley today. Your prayers are making such a difference in the life of our little "pickle". I will post this afternoon to let you know if she passed. Have a wonderful day. Trish

DAVE

Its only 12 more days until Dave and the kids fly out to spend Christmas with me and Ash. I am so excited that we are under the 2 week mark. Christmas this year won't be what we are used to, but we will all be together. I am trying not be sad about all of the traditional things we won't be able to do . Instead of having the whole month to spend preparing for the holiday and making memories we are going to pack as much as we can into our 12 days together. I am looking forward to making it a holiday to remember for Blake, Allie, and Ashley. Who knows? we might actually see snow here in Nebraska. That would be wonderful!

Ashley started her day out with a bang. During the night she managed to pull out the last stitch that was holding her central line into place. So when we turned the lights on early this morning (before 7:00a.m.) we found her laying in a puddle of blood. Not only had she pulled the stitch while trying to remove her breathing tube last night, but she also had almost pulled the whole line out of her neck. So after rounds this morning they worked on re-threading her line back into her neck. Ouch! She now has a shiny, new set of stitches holding it into place. The rest of her day was fairly lazy until we spotted another puddle of blood under her shoulder. This time she had managed to get one of the ports disconnected from her line and her blood had begun to back up and leak all over her bed. You might be interested to know that she has managed to cause all of this trouble while her hands and arms have been in restraints. She is so frustrated about being on the ventilator that she constantly rocks her head back and forth in an attempt to get the tube out of her little throat. I am so used to watching her fight the vent that by now it is just something I accept. Even in restraints and with a tube down her throat she manages to show us just how much trouble she can cause. I think this is her own little way of making everyone pay for keeping her in this condition. She is such a mess and she is also very good at making them. We have been able to wean her vent settings all through out the day and I feel very confident that she will be off of it tomorrow or the next day. I know she will feel much better once it is gone.

Even with all of the excitement she has caused it has turned out to be a pretty lazy day here in Omaha. The weekends are so slow and so long when Dave and the kids aren't here with us. I wish they could spend every weekend here, but that is just not affordable. We are busy getting the final flight plan and all the details worked out for their Christmas visit. I am still praying that Ash will be feeling good and be on her way out of here by the time the kids arrive. I know they are looking forward to playing with her. God has been good to us and has given us another day with our Ashley. He continues to bless us and show us "great and mighty things". I am looking forward to tomorrow to see what blessings it will hold. Thanks for visiting Ashley's Story today. We appreciate the time you spend here and in prayer for our sweet girl. May He bless you.

Dave is one of the people in my life that makes it so great. What a lucky girl I am to be married to this guy. Last night at our house was "Date Night". Blake had gone home with a friend after school to spend the weekend, so that left Dave and Allie a whole evening to spend alone together. Several years ago Dave began "dating" our daughter Allie. He came up with the idea that he wanted to be the one to teach her how special she was and how much she should always be valued. One of the ways he decided to do this was with "Date Night".

On date night the excitement in our home is hard to contain. Allison loves it! We usually begin preparing for her evening out by choosing just the right outfit. She likes to lay it out early in the morning and then she begins counting the hours until she hears the knock on our door. We always do her hair and make up (a little lip gloss and finger nail polish), and she and I spend precious time talking about all the things that Daddy must do. First things first he must come to the door. She does not allow him to honk for her to come out. Sometimes he surprises her with a boquet of flowers. She loves this! She always runs in and places them into a vase before leaving. Next he must open the car door for her. One time he forgot and I was watching from the window as she patiently just stood outside the car waiting for him to get back out and open her door. Nothing gets by her. They usually have dinner and conversation together at Allies favorite restaraunt Pappacitas. Where I have been told that he pulls out her chair for her and places her napkin in her lap. She thought this was really dorky! (One time I think she chose Burger King instead) Then off to the putt putt place they go. She loves to do Pappacitas and putt putt almost every time.

Last night they switched things up a little because the putt putt place was closed. They went shopping instead. He is the best dad in the whole world. Dave hates to shop, but Allison loves it. They went to Claires in the mall(her favorite store) and then to Old Navy where he bought her a new pair of p.j.s. Next they went and rented the Polly Pocket movie so they could go home and eat popcorn and be all cozy in their pajamas. I love this guy!

The best thing about "Date Night" is that Dave and Allie get to make special memories together. I know there will come a day when he finally agrees to let her go out on a "real" date, and my prayer is that a smile will always come to her face when she remembers how special her daddy treated her. Allie knows that the only guy in the world who is allowed to hold her hand is her dad. (He taught her how to punch somebody just in case someone else ever tries to. This made me laugh and laugh when she came home and told me.)

I wish I could have been there last night to help her get ready, but I was busy here taking care of our Ashley so that she too might have special "Date Nights" with the best guy in the world. I love that he loves our girls so much! He's the best.

I received good news after the ultrasound of Ashley's lungs this afternoon. The pocket of fluid in the left lung is showing to be smaller than they expected it to be yesterday. Yeah! I feel more confident that the medicine will be able to move this amount of fluid out and allow her to breathe on her own in the coming days. This evening we do not feel that they will need to place a chest tube in Ash. I am so relieved! We have not made any progress on her vent settings today, but we are hopeful to go down on the rate after the 6:00 blood gas. The plan is to go slow and steady and allow for her to rest and adjust between each change. I am praying that this will be a successful plan and that she may be breathing on her own by Monday. Ash has been sedated and has slept most of today. Our nurse this afternoon has done a fabulous job taking care of Ash. I love the nursing staff here in Omaha. Most of them are warm and wonderful people. I so appreciate the friendship of these women.

This evening while I have sat next to Ashley's bed I began to sing her a Christmas song I learned years ago called "Big things come in Little Packages". The words to this song seemed to sum up Ashley's life. I giggled to myself as I got to the part in the song where it talks about being "easy to wrap, it just takes a snap! Some ribbon and a teeny, tiny bow". I am afraid her nurses would have to disagree with me on this part because as we struggle to change Ash's diaper, her ostomy bag, and her line dressings, she is anything BUT easy to wrap. ( Although she would still fit in a little package. ) The point being is that on the outside of a small package you may not think there could be much inside, but just wait until you see. My Ashley definitely arrived in my heart tucked inside of a small package, but once we opened her up I would have never imagined just how BIG she was going to be. The impact she has made in my life and in our family's life is HUGE! God sent us a little package weighing only 2lbs and 12 ozs, but her spirit and her will to live was so much bigger than that. Tonight I am so grateful to have learned that "Big things do indeed come in Little Packages."

After one of our longest nights so far, Ash is finally asleep and resting. She and I were not able to sleep at all last night. Ashley fought against the ventilator for hour after hour. This morning they eventually came up with a combination of medicines that have "knocked" her out for a while.

This morning during rounds the surgeon was able to reassure me a little that this is only a small setback. He does not plan on "poking" around on Ashley any more at this time. He has ordered an ultrasound to be done this afternoon to give them a better idea of how much fluid has accumulated in the lung. He would like to try and resolve the fluid using medicines first, before he allows another attempt at placing a chest tube. The area where the fluid is located makes it difficult to navigate a tube into without risking a puncture to her spleen or to her heart. I like his approach much better than the approach that was taken last night. Sometimes I am afraid that some doctors like to tell you more than they should. I am not sure why they feel it is necessary to go into all of the "what ifs" that you really are not even close to facing at the time. Last night I had no words. It was difficult to find the right thing to say to Dave over the phone. My heart was so desperately hurting for Ash that I could not think straight. I felt as though what I was being told we could be facing was more than I really could handle. Even though I know in my heart that God promised not to do that to me, it was still feeling like we couldn't tackle one more thing. This morning He has given me a peace and a reassurance that this WILL be "do able" for us. This is just one more day that will eventually bring us closer to home.


So many times I think of the passage of scripture where we are told how He knew us before we were born, and how we were "knit" together in our mother's womb. Ashley was not formed in my womb, but that does not make me feel any less of her mother. In all actuality, she was "knit" together in my heart and I feel as though I am more of her mother because of that fact. Ashley was formed in my heart years before her actual conception and I loved her without even knowing if she would ever be born. I loved Ashley without even knowing if she would ever be mine. I loved my Ashley without ever knowing if she would be able to call me "mommy". The bond and the love that I have with my daughter Ashley was given to me by the Father who allowed her to be mine. I chose to walk this journey through her story with her, and I have never been more sure of any choice I have ever made. Whether He allows me to be her mommy for a short time or a long time, today I feel the reassurance of knowing that she and I are where we are supposed to be.

Thank your for your prayers and concern. Last night I am guilty of doing a little venting. I pray today I will hold it together a little better. Thank you for lifting us up when we fall.

DAVE

DAVE

One thing I have been learning through Ashley's life is that all things happen for a reason. Many times it takes a while for me to figure out what the reason is, but today it has happened in a short amount of time. Even when I don't understand why things are happening to her, I know that the Father is busy protecting my sweet Ashley.

This morning I was looking forward to seeing Ash come off of the ventilator. When that was unable to happen I was disappointed, but I along with the doctor wanted to make sure that she was ready. As the day progressed we were able to accomplish a few things so I was still feeling encouraged. We made a couple of vent changes in anticipation of trying again tomorrow. After making the changes we tried to suction Ash to make her more comfortable and instead of pulling back mucus we pulled back blood. Not once but A FEW TIMES. We began to take a closer look at the breathing tube and saw that it had been inserted to a depth of 14 instead of a 12.5. We repositioned the tube and decided to take an x-ray to make sure it was in the right position. After the x-ray was taken the nurses were busy removing the I.V. from her groin and pulling the catheter from her bladder. I stepped into the hall to speak with Dave and when I came back in they told me the results of the x-ray. It showed that Ashley had something they call plural effusion at the base of her lungs. They explained to me that this was a pocket of fluid that had collected and the left lung was worse than the right. The fluid would have to be drained. Now the inablility to take Ashley off of the vent this morning began to make sense to everyone. She was not able to breathe on her own because of the fluid pockets. Even though things were not happening the way I had wanted them to, I can now see His protection on my sweet Ashley. Had we pushed her and tried to take the ventilator away she would have surely failed and we would be faced with a very ugly situation tonight. I am just so grateful for His protection! He knows things and sees things that I don 't, and this is why I must trust Him with Ashley . I may not always understand His ways, but I know that I can trust them. They are now preparing to place a chest tube into Ashley's left lung and allow the fluid to drain out. My heart is breaking once again for the discomfort she will endure and my stomach is feeling sick. At the same time, I am in awe of His protection in her daily life. Please pray for Ash as she must once again endure another uncomfortable procedure.

There are days when I wonder just how much more she can take. There are times when I don't find the answers I am looking for. There are moments when I would like to scream for her. There are days and events and situation in her recovery that I may never understand, but today I am trying to focus on His protective and loving hands that He has wrapped around my daughter. As I lay my head on her pillow and kiss her soft cheek I cry for the pain she will go through tonight, but in the end He is still protecting her. I am still trusting.

This is the phrase of the day around here. They have already tried and failed to wean Ash off of the ventilator this morning. The plan was to have her breathing on her own by 1:00 this afternoon, but Ashley has decided to stop all the plans. As they were weaning her down in preparation of removing the tube she began to struggle and began to breathe too quickly. She was not holding her sats and her lungs began to sound "weezy". So in came the doctor and he made the decision to "abort the mission", and try again tomorrow. Perhaps Ash just needs another day to rest and build her strength.


The good thing about trying to take her off of the vent today is that while her sedation was stopped she began to wake up and respond to me. I asked her several questions and each time she understood and nodded with the proper response. She waved to me when I said good morning and hello. She is still in there and that has taken such a burden off of me. We were not sure if Ashley had suffered any damage while her sats had dropped into the single digits last week. This is something we have been too afraid to really discuss with anyone, but Dave and I have been struggling with the thought of having lost part of her. This morning I am so grateful to have seen a small window of her personality showing. God gave me just enough time with her to answer the questions that have been haunting me for a week now. I am so relieved! Obviously we are disappointed that she is not able to breathe on her own today, but I would rather take it slow and wait until she is definitely ready. She is now sedated again and I will not see any of her until we attempt this all again tomorrow. One thing we have all learned about Ash is that she likes to write the pages of her own story. She likes to decide when and how she will do things.

Thank you all for your time spent here on Ashley's Story. Your prayers and encouragements keep me going all throughout the days and nights. I am going to go try and get a call through to David and let him know the change in our "mission". Have a wonderful day and may God bless you and your families. Trish

Its not quite 10:30 and I am so ready for bed. I have aged so very much since coming to Omaha. I have always been the type of person who could stay up all night long. I never need to sleep when I am at home, but something inside of me has definitely changed. I am now OLD. Not only in appearance but also in spirit. While Dave was here with us over the weekend one of the women who clean the floor was visiting with me. She is originally from Vietnam and she speaks in very broken english. I can only understand every third or fourth word that she says to me, but she has become one of my friends and I enjoy listening to her talk. She told me that she saw my husband and that "he is a very young boy. He too young to be you. He too young to be going through to this with you. He too young to be married you." I just smiled and nodded, now feeling older than I ever had before. When I told Dave what she said he of course laughed and began to dance a little jig around the room. He was feeling quite proud of himself. I told you all the wrinkles and the gray hairs were taking over! Yesterday when I spoke with Blake on the phone his dad was in the background insisting he tell me what happened in the carpool at school. Blake said that the teacher who was working the carpool mistakingly thought that David was Blake's older brother not his dad. Thank you so much! This only added to the joy my "young" husband was feeling. Sometimes life is just not fair! I could hear the glee in David's voice as he added his comments to the story Blake was telling me. So tonight as I type this message I find myself yawning and feeling as though I have been awake for days. I so badly need to go to sleep.

Today has brought me to my knees once again as I realize how truly blessed I am. I have met several other families the last couple of days, and as I learn their stories my heart breaks for their children. I know I have been placed in this PICU to teach me lesson upon lesson. I believe we are still here for a reason, and today that reason was so that I could begin to pray for these children. They are very, very sick. I am not the only parent clinging to the life of my child. They are all around me. How sad it is to me that it is Christmas time and the halls of this unit are full. Tonight I am reminded of how my faith in Christ sustains me. I have hope. I have a place to run to. I have a Savior who I know loves my Ashley more than anything. Those who do not believe, have no hope. They are wondering through the halls asking why me? why my child? why? why? why? I don't ask why. I know there is a plan. I know there is a purpose. I know there is a God in heaven who loves me and my children. Tonight I pray that while I am in this place, He will use me in some way to touch the lives of these families. Please remember to pray for our fellow patients; Skyler, Chloe, Kiley, Davy, Jenny, Preston, Caroline, Davian, Timothy, Mariah, Gavin and the many others who I have not met, but love just the same. They are all precious in His sight.

Take care and God bless you tonight. I must now go lay my OLD body down in my "favorite" recliner. Love, Trish

I am still waiting for Ashley to wake up. The paralytic has been turned off since early yesterday morning and she is still sleeping. I have seen her move her arms and legs. She has also been shaking her head back and forth telling us that she does not want the tube in her mouth. At one point she actually squeezed my finger with her right hand. There have been so many days when this was the only way she could communicate to let me know that she was still in there and that she loved me. I am now waiting for her to open her eyes. I am talking to her and I can see her heart rate increase so I know she can hear my voice.

There have been moments the last few days when I just couldn't put into words the thoughts and fears that were inside of me. I am just now able to acknowledge what He knew was in my heart all along. I had lunch in the cafeteria with another mom who has become such a precious friend to me during the last couple of weeks. As I sat down and caught her up on all of what we had been through over the weekend the tears poured from my eyes. I have felt an absolute desperation as I watched my beautiful Ashley slip away from me and into this last setback. I would pray and ask God to heal her, and to bring her back, and to hold her, and to allow her to wake up again, and to get us through one more time. The one thing I could not say to Him is that whatever His will would be for my Ashley that I would accept it and be o.k. There is a part of me that even though I know how much He loves her that just won't allow myself to say if He needs her more than I do than His will be done. As I visited with my friend, once again I realized that He more than anyone else knows and understands what it feels like to watch your child suffer. He has been where I am, and He knows the pain in my heart. How long will it take for me to reach where He wants me to be? When will I get it?

So tonight I am not the only one waiting. As I sit and wait for my Ashley to open her eyes, I have figured out that He too waits for me to open mine. I am so thankful He loves me enough to see past the times that I fail Him and still chooses to forgive me. I am so thankful to know that He is still willing to wait for me in the times when my faith is weak.

This morning during rounds we made a tentative plan for how to proceed from here. Ashley is making beautiful progress on the conventional ventilator and they would really like to see her come off of it by tomorrow afternoon. Ultimately she will be the one to decide if they can take her off, but all of her vent settings are coming down nicely. She has been able to hold her sats at a constant 92-95. They have already begun to give her doses of steroids to reduce the inflamation in her airway in anticipation of removing the tube tomorrow. I can't tell you how relieved I am to hear this news. God has answered our prayers and Ash is coming back around. He continues to bless us daily in the midst of all of this. I am more than grateful for the progress she is making. Last Friday we were so unsure of the future, and I would have never been able to forsee her coming so far so fast. My prayer has been that she might be up and breathing on her own before Blake and Allie arrive for Christmas. This morning it looks like more of a possibility.

There are never any solid answers for why things happen the way they do, and this episode has not been any different. We honestly have no idea why Ash became so ill this quickly. It literally happened in just a matter of hours. Was it the bacteria? Was it pnuemonia due to aspiration? There is really no evidence to support either of the two. In the end, none of this even matters to me. What matters to me is that the Father is bringing her through once again. She has started sluffing off a very thick protein substance from her new bowel, so we will be doing another biopsy this afternoon to check on the cells. This has happened before and everything came back fine.

Since there is no evidence of aspiration causing the pnuemonia, we are not going to intervene surgically right now. We would like to avoid another major surgery if at all possible. We are all in agreement that this is not in her best interest at this point. We will begin feeds again in the next few days and see what happens. We will be praying for no vomitting episodes. I know that God understands the importance of feeding Ashley. He created her and every part of her. So even though I am nervous at the thought of beginning feeds and starting this process again, I am confident that I can trust Him with Ashley.

I am blessed beyond what my words can express. I am blessed to here with my daughter. I am blessed to have the knowledge of the doctors in this place. I am blessed to have the friendship He has provided me from so many of the nurses. I am blessed to be able to see past this PICU and see that one day this will all be just a memory. I am blessed to know that Ash is now stable enough to make a plan. I am blessed to be the one that she will see once she opens her eyes. Thank you again for walking this with us. I am blessed to know you.

In the last hour or so Ash has begun to move her right arm just a little bit. I am so very thankful to see even the slightest movement from her. I have been waiting all day, so I feel as though I have just received a gift. Each and every day that I have been given with Ashley has been a gift. I did nothing to earn or deserve such a wonderful present, but how blessed I feel to be the recipient of this tiny, special package. If you ask me, the most wonderful gifts are those that catch us by surprise. When I am not expecting to receive anything but it just shows up. How my heart smiles when this happens.(Especially when Dave shows up with a cherry limeade from Sonic!) The day that we were called and told that Ashley had been born was one of the best gifts I have ever been given. I was caught completely by surprise! I remember calling Dave at his office and telling him she was finally here. "Who?" he replied. "Our baby!" I said.

Although we had been praying for this child for many years I never really knew for sure if God would give us another one. I could have never imagined what a gift He had prepared for us to receive. She is more wonderful than I had ever dreamed. How was I to know that the gifts would not end? Throughout her life I have watched as the Father has given us gift, after gift, after gift. Each breath that she takes is a gift. Each smile that she shares has been a gift. Each time He brings her through is a gift. The joy she gives to us is a gift. Her ability to keep fighting time and time again is a gift. Her transplant was a gift. They are never ending.

Tonight I am thankful for each and every gift I have been given by the Father. Ashley's life and her struggles have made me so aware of how blessed by His gifts we truly are. As we approach the holiday season I sit and think about the incredible love of God. Jesus was a gift! His willingness to give His life for me was a gift! His love for me is a gift!

Wow! I feel like I have been asleep for at least 100 years. You can just call me "Rumplestelskin", but definitely not "Sleeping Beauty". I woke up with imprints and wrinkles all over my face. I think I must have felt such a relief once she was taken off of that "ugly" vent that when I sat down in my "favorite" chair I was out! The day has disappeared from me. Dave has already been gone for more than 12 hours.

Ashley has not moved a muscle. We are still waiting for the first sign of movement from her. The nurse checked her eyes with the flashlight and got not nothing. Sometimes it just takes a while. Thats o.k. though, just to know that she has the ability to still move once she wakes up is enough for me right now.

I have so much to be happy about. Ashley has had stable "numbers" all day long. Her Sats, her temp, her blood pressure, her heart rate, they have all been beautiful! This is the first day I have felt confident in her recovery. We have such a long way to go, but we are going to get there and that thought warms my heart. They have ordered some CPT for her to try and work on her lungs a little. This is not knew to us. Ash has been on it for all but the 3 and half days we were up in co-op. Before we left last week she had begun to grab a hold of the machine with both hands and lay her little chin on top of it. This was so funny because the vibration of the machine would shake her little cheeks so fast. None of us could believe she had become so comfortable with it that she decided she could just do it herself. Ashley's lungs are looking a little better and better every day. She still has a collapse in the upper right lobe and the lower left is still a little junky so hopefully this treatment will help her make some progress.

Tomorrow is the day Ashley and I were supposed to be moving into our new apartment together. Instead of moving there we have moved all of our things into the bathroom in Ashley's room. There is a cutain that separates it from the rest of the room, so I have named it our "magic" curtain and I am just pretending that there is not a toilet in there. This "magic" curtain is hiding all of our suitcases and it is also hiding all of Blake and Allie's Christmas presents. Please don't tell them that their gifts are sitting next to a toilet! Al would just die! Honestly they are packed neatly in a box and completely protected, and the toilet isn't even allowed to be in use. Sometimes my life just makes me laugh!

I want to thank you all for your wonderful, encouraging words that have been left in Ashley's guestbook. I appreciate each and every posting. You have all blessed my heart during this very difficult time. I am anxious to see what God has in store to write on the pages of Ashley's story. Somehow I just know the ending to this chapter is going to be great! The beginning wasn't quite what I had imagined, so I am praying for a happy ending. Take care and God bless. Trish

She is making progress. They have taken Ash off of the "ugly" vent and she is now doing very well on the conventional ventilator. My heart is so thankful. I find myself smiling this morning as I see His hand on my daughter. He is once again bringing her through this tough spot. They are turning off the paralytic and she should begin to move a little in a few hours. On Friday I wasn't sure if I would ever see her move her little fingers or toes again. She is coming back to us! I have never tried to pretend that I know what the plan is, but this morning I am taking great comfort in knowing that the Bible says to me, "I know the plans I have for you saith the Lord." He has plans to prosper us and not to harm us and today more than ever I can feel this.

Ashley still has a very long way to go, but I know He is strengthening her everyday. Her temperature, blood pressure, and heart rate are all 3 stable this morning. She is still extremely swollen and not really recognizable yet, but I know she is in there and God willing she will start to wake up today. My heart is full of gratitude and thanksgiving this morning. God has been good to us even during the hardest of times. I have no idea if I have failed the test during the last 5 or 6 days. There have been times when I could pray or say absolutely nothing. There have been long hours of silence as I have searched my heart wondering how would she ever come back from this. In the end He has been there, and He has been faithful.

Thank you for praying. Thank you for loving my tiny gift from the Father. Thank you for being faithful to Him in your prayers for my Ashley. My debt to you all continues to grow and one day I hope to be able to give back to you all what you have given to me. I am going to go and watch for any sign of movement from my sweet girl. She is making progress and I am so excited! Take care, Love Trish

As I sit to type my thoughts and the days events, Dave is in the room with Ash preparing to go. He is trying to arrange an early morning flight to leave Omaha around 5:00a.m. and arrive in Longview by 10:00. I can't even imagine how hard it will be for him to leave this time knowing how sick his little gherkin is. We feel it is necessary for him to be back home before Blake and Al come home from school. They are beginning to feel the stress of us all being so far away and my heart broke today as I could here it in their voices. He is planning on spending the evening playing with them, and making up for missing out on their "Monday Night Wrestling Match". This is the new tradition that takes place in our living room each week now that mom doesn't live there to get on to anyone. I try not to envision all of the things that have probably been broken over the past 10 weeks.

We have decided to let our room here at the hospital go for now and I will be moving mine and Ashley's things into her room here in the PICU. Now that we will be paying for our apartment there is just no way to afford both. The only thing I used the room for was to take a shower in, so it really isn't that big of a deal. There is a public shower here in the family waiting room that I will start to use. Ash and I will not even be living in the apartment until she is able to be discharged from the hospital again. The apartment complex worked very hard to have ours ready by the 6th because we were supposed to be moving into it this week. I try not to think of that too much because it just makes me sad when I realize how close we actually were to having a more normal life. At lunch today Dave and I were able to talk about a lot of things. Actually he did most of the talking while I sat there and cried. In the end we have decided that God must not be finished with us here in the PICU just yet. Perhaps we are meant to stay around here for a little while longer. At one point during our conversation I wondered out loud why we hadn't been made rich if the Lord knew we would be living the life of transplant. I was just wondering why we didn't have a billion dollars like Oprah does? Then Dave brought it all into perspective for me. If we had a billion dollars and did not have any financial burdens during this time then we would have missed out on the blessings that come from relying on God. How true! I am blessed daily as I watch the Lord provide for my family during this time. We would have missed out on so much! When I sit and think about all He has done and is doing I can honestly say that we wouldn't have it any other way. God does provide above and beyond our needs on a daily basis. He is so generous to us and has blessed us so very much over the last couple of months through His body of believers. He is good, and we are so grateful.

My heart aches and I feel sick when I think about being here alone with Ash again. Dave makes me smile even during the toughest of times. He just has a way of being exactly what I need when I need it. My prayer is that Ashley will improve more and more as the holidays approach. I am praying that she will be off of the ventilators and sitting up and playing by the time Blake and Allison arrive. I know we will be here for Christmas and that is o.k. because we will all be together. That is what is most important to us. I am counting the days until the kids arrive. Only 18 more to go! I can't wait. Thank you for loving my Ashley today and for following along with her story. I realize how hard it has been over the last 5 days. Just know that I appreciate each of you for continuing to show up on this website. You strengthen me with your words, your prayers, and your presence.

If you haven't seen the guestbook lately you have to check it out. I was looking to make a Christmas guestbook. I think it is perfect for Ashley.

She is doing about the same so far today. Baby steps on the vent. Hopefully in the next day or two she can be back on the conventional vent.

Trish and I did leave for lunch and when we came back her heart rate was down in the 150-160s and her blood pressure was closer to normal.

DAVE

The feelings I got during rounds this morning are very hard to explain. There were a couple of things discussed that make me feel as though we are going to beat this and be able to move on. Those things encourage me. Then there are parts of the discussion that make me very aware of just what a long walk back it is going to be. So I will do my best to explain what I think is going to take place.

First of all we are continuing to make progress on the "ugly" ventilator. That is a blessing. The progress has been slow, but it is still there. The goal for the week is to attempt to have Ash on the conventional vent by Wednesday. At this point I have stepped out of the room while they have decided to hand bag Ashley's breathing to get a feel for how tight her lungs are. This will give them a better understanding of when and if she will be ready to move off of this vent. It makes me nervous anytime I see them breathing for her with a bag.

The doctor in rounds this morning does not feel as though the bacteria that was identified in her blood stream is really the reason she has become so sick. It doesn't seem to make sense as to why she went down hill so quickly. It may be a combination of this bacteria and the fact thay it seems Ash may have aspirated into her lungs again during one of her vomitting episodes. I was told this morning that he believes we will be able to bring her back from this and treat her for this infection. That is good news. I am more than thankful to hear that. This morning has been the first time someone has told us they believe she will recover. I know that ultimately God is in control of Ashley's recovery, but I am thankful He has placed here with such an amazing team of doctors and nurses.

The results of the ultrasound are not critical. The fluid should resolve itself as Ashley's body begins to transfer it back into the correct spaces. We are using some more diuretics this morning to try and remove some of it. Ashley's ostomy output has more than doubled in the last 24 hours and we are suspecting she has picked up another virus since returning to the PICU. They will be sending samples and trying to identify it today. It may also be caused from the strong and aggressive use of antibiotics she is on.

Some of the more difficult parts of this mornings conversations were the realization that we will be here for a very long time. At this point, outside of a direct miracle from God, we will be spending Christmas here in the PICU. My heart breaks for my children, but we will do the very best we can to make it special for all 3 of them. After Ash recovers from this setback we will not leave the hospital again until the vomitting issues have been resolved. There is no way to know how long this will take. Ashley and I will probably be living in Omaha much longer than we had hoped. My fear in this is the length of time spent away from my Blake and my Allison. Tears fall from my eyes as I wonder who they will become at the end of this journey. I pray with all that is in me that my relationship and my friendship with my children will not be altered. This is absolutely the most difficult part for me. I love them both so very much and I hope they will one day realize that although I was absent my heart was always present. Father, please restore my family someday and allow us to be together again.

More than ever I am learning to trust in God. My heart may break and the tears may fall, but He is with us every step of the way as we travel this path. I don't question. I just try to accept. I may never understand why she has to struggle and why this has to be so hard, but I do understand that He wants what is best for Ashley and for all of us. The days are long and the nights are even longer, but I know that He can see the end. The end that will result in all of us living at home in our little house again. Happy just to be together and to be loved by the One who put us together as a family.

Today has been so very difficult for Dave and I. There is nothing about our Ashley that looks the same. We have now lost every feature of her face and her body is so fluid overloaded. They have estimated that she has an extra liter of fluid on board. She is so swollen and it looks so painful. Her eyes are so swollen that they can't even get them open to place the drops in them to keep them from being scratched. Her tiny lips have been stretched so tight because of the fluid that the corners of her mouth are now bleeding. My heart is heavy and broken as I sit by her bed searching for any sign of who she is. We are in a tough spot right now.

No changes have been made on the ventilator today. We have not made any progress. She is just sitting in the same spot as the night when she was first placed on it. We are praying for her respiratory issues to stabilize so that she might start to improve. The days are long as we wait next to her bed. So many things run across our minds, but they are difficult to talk about. Dave and I just sit in silence and listen to the machines hum.

As I was visiting with Skyler's mom this evening she reminded me of when the Lord asked Abraham, "Is there anything to hard for God?" Oh, how I needed to hear those words. This set back has been the toughest so far, but it is still not too hard for the God that I believe in to handle. With just a single word He could turn this situation around. He is in total control of every breath that Ashley takes. Faith, Hope, and Trust are what we have to believe in. I have Faith that there is a God who loves my Ashley, I have hope that He will heal her and restore her, and I place my Trust in Him to hold her during this time. Beyond these things I have nothing else. I am at His mercy to bring back to me the child who I feel as though I am losing. I miss her with everything inside of me tonight. I miss her face. I miss her little eyes that sparkle with her spirit. I miss her smile. I miss her voice. I miss her cry. I miss holding her. I miss smelling her sweet hair. I miss placing kisses on her forehead. I miss seeing her reach out for me. I miss Ashley. She is here, but yet she is gone. I look forward to the day when she wakes up and starts to come back to us.

Once again I will ask for your prayers for our Ashley. As you go to church tomorrow I will ask that you please place her on the prayer lists. If you do not attend church tomorrow I will ask when she comes to your mind if you would please just whisper her name to the Father. It doesn't take a lot of fancy words. I know He can see our hearts and I know He sees the intent behind each and every prayer. Thank you for checking on her tonight. I appreciate your time, your thoughtfullness, your love, and your prayers. Trish

Today has been very slow and very quite. The only sounds in Ashley's room is the constant hum and pumping of the ventilator. She is still paralyzed and still carrying much to much fluid. The blood gases are not changing much and all the monitors are realativly quite. As somone had put in a comment we have to come to learn that no news is sometines good news. We are trying to figure out our living situation. Because of Ashley's progress last week we had put pressure on the apartaments we are moving into to try and get us in sooner. Now we know we will not need it sooner and I need to let them know we would like to go back to our original date of 12-22. I hate to do this and start off this way with them, but it is the only decesion that makes economic sense. Because of the progress we are now paying twice as much for the room here at the hospital where we are staying and I really don't want to add an apartment expeses on top of the hospital expenses. This is a difficult balancing act without knowing if or when she will be relased from the hospital. I just pray for wisdom is making decesions and pray that God will continue to make a way for us. Thank you for all your prayers.

DAVE

This morning we learn just how fragile our little one truly is. Ashley has always been so very tiny, and petite. Each day as I study her face I am in awe of how He created my daughter. Although she is little her spirit is so very big, even though she is weak and fragile at this moment in her life I admire her strength. Last night her nurse tried to reposition her. When she began to move one of Ashley's blankets the monitors began to alarm and her saturations started dropping. Just the movement of a blanket against her skin can cause her to be in distress. This is why we are not allowed to touch her at this point. She is just too fragile, and any touch or movement can cause her to struggle more. As a parent your instinct is to pick up your children to try and comfort them when they are sick or hurting, but we can not act on that instinct. Instead we just sit next to her bed and empty our hearts before the Lord asking for Him to heal our sweet Ashley. I have found myself begging once again for just one more day. Please don't let today be the day. Ash has so much to give to this world that I can't accept the thought of her not being around to do all she was created to do. She will come back, and what a story she will tell!

There are many things happening this morning. We have been told that a bacteria has grown back in one of the cultures. It is in her blood steam and this is thought to be the cause of her sepsis. Where or how it originated is unknown. Sometimes the body reacts by making toxins in response to something else. We also know that she has pnuemonia in both lungs causing her to be in respiratory distress. We will know Ash is starting to recover when they are able to make changes in her ventilator settings. We are taking blood gases frequently to see what the levels of oxygen and carbon dioxide are. These levels help in determing when and if changes can be made. We will begin using a diaretic in an attempt to help Ashley urinate. She has only had 11ccs out so far today. They are talking about beginning dialysis to help her through this time. There are other things creeping into our minds about how long Ash's sats were low and how low they dropped. We are trying not to allow ourselves to think about the results of these things. That is another battle for another day.

If there are blessing to be found and I know that there are, it would be that today we have some direction as to why she is so sick. We know what bacteria we are fighting and we can be more specific in the attack. Another blessing I am counting is that many of the nurses have become so much more than just nurses. They are now my friends and they love my Ashley. They too are praying for her to recover and they are working hard to take care of her. God has provided me with a support system here in the halls of this hospital and that brings me great comfort. I am also thankful that Dave was able to come. I did not want him to fly in because I worry so much about the "real" life issues we are facing back home. The financial responsibilities that he has and the responsibility he has to stay and take care of his patients are both very important. We are truly blessed by the patients God has brought to our office. They continue to bring stength to him as they come in each day and share their hearts with him. I am thankful God has brought these precious people into our lives through our office. Although I would like for Dave to stay with me, real life requires him to work. I know that God will provide for our needs just as He always has. It is also improtant for David to be the constant in Blake and Allison's life. They need to feel the safety and stability that he provides for our family. I am worried about the burdens they carry on their tiny hearts.

Even at this time in Ashley's story I still know that God is with us. He is taking care of my sweet girl and holding her for me because I can not. I prayed by her bedside this morning and asked Him to please slide His hands around her ever so gently so that she would feel the presence of someone who loves her holding her. I know that He is there. Thank you for loving our Ashley. Thank you for telling His story by telling hers. Thank you for praying on your knees daily for my baby. You are carrying a heavy load when we feel as though we can no longer. Each of your prayers are more valualbe than silver or gold. We owe you each so very much and we love you for walking through Ashley's story with us. May He bless you for your kindness to a little one so many of you have never met. Love , Trish

I finally got Trish to go to the room to get some sleep. I pray that tonight she will sleep well and sleep hard. The only update that I have is that the respiratory therapist came in and said her blood gases looked a little better. We are back to taking it one baby step at a time and we are thankful for every little bit of good news available.

Goodnight,

DAVE

First off I want to thank Dawn from American Airlines. Dawn works the ticket counter at the Gregg county airport. If it wasn't for Dawn there is no way I would have made it to Omaha this afternoon. Without her I would be sitting in Dallas right now waiting for the 9:05 flight and I would not arrive here until 11:30 tonight. So Dawn if you read this thank you so much for helping me out when I know you were having a horrible day at work. I really appreciate you.

I left the room a while ago to go to Trish's room to change clothes. Before I left I told her I could not be held responsible for what may or may not be in my bag. Have you ever packed for a trip in 90 seconds? Well I did today so I may not look good, but I know I have some comfortable clothes to sleep in.

SHOW ME THE SNOW! When we came to Omaha for the first time this summer they told us that if we were here in the winter we would definately see snow. Well I left Texas today and looked out my window and I saw snow in TX, then I saw that Oklahoma was covered in snow and then I saw Kansas covered in snow. I get to Omaha where I was promised snow and ............ where is my snow man? I guess it must be waiting for the kids to get here so we can have a white Christmas. I sure hope so.

No news on Ash. No changes have taken place since I arrived. The only thing I can say about Ash is that when I went to Trish's room to change clothes I saw and empty crib. A crib where my little Gherkin should be tonight being awnry and giving her "Mama" trouble. I pray she will be back there soon.

DAVE

Things are not going well at this point. Ashley is not stable but now critical. They are running everything they can think of into her little body trying to catch up . They have now determined she has a sepsis. This means that she has an infection running throughout her entire body. The surgeon is in the room attempting to place an art line. He is having trouble finding a palpable pulse on her. It is not certain but suspected that she has aspirated into her lungs once again. She is showing pnuemonia in both lungs at this point. The plan for now is to try and stabilize her again. Once she is stable and well from this infection, then we will begin talking about going into surgery to try and find a way to make it possible for her to eat. Right now that is a long way away from where we are today.

I wish now that I had spent Wednesday taking pictures and videoing my little Ashely. She was absolutely precious and we enjoyed many, many hours of playtime, naptime, rocking chair time, and just Mommy time. I wish I could rewind time and go back to that day. I would have never put her down. Not for one moment of that day. Today I find myself in a very scary place. I asked if we could get her back from this and the answer was if they catch up in time. My heart aches like I never knew was possible. I have a pain deep inside of me that is unimagineable. I just want to see her happy. The crys and screams of last nights events will haunt me forever. She eventually began to growl in the saddest, scariest sound of desperation I have ever heard. Then she just gave up and allowed them to do what needed to be done. I miss her smile and the awnry look in her eyes. I miss holding her and touching her. I miss her just being her.

Please pray for my very sick baby. She is fighting the good fight. She is tough and strong and stubborn. I know she will come back from this. Today is just a bad day. I am praying for a better tomorrow.

I think I may be suffering from a mild heart attack. My chest and my head are killing me. It is now 5:oo a.m. and just 12 hours ago we had been discharged from the hospital. Now things have continually gone from bad to worse. I can't even describe the series of events that has happened to Ash tonight. All I can say is that she is now on the oscillating (high frequency) ventilator.

Sometimes the things that happen here seem so unreal. Surely I must be having a nightmare. One thing I have learned is that transplant is a very dangerous game to play. There are no simple answers. It is literally a moment by moment gamble with your childs life. I have no idea how to tell Blake and Al that Ash is back on the vent. They are going to be so disappointed this morning. I promised Allie that I would call her at 7:30. What am I going to say? She wants to tell everyone how Ashley's first night out of the hospital went.

If you come to this website today I would really appreciate it if you would please pray for my Ashley. I don't know where you are with your spiritual life, but I know that He listens and that He hears. I am asking everyone who knows Ashley's story to please pray for God's will to be done in my little one's life. To be honest with you I can't even form the words. They just won't come out of my mouth. I am tired and I am exhausted and I can't even pray, but I know this is what will bring her out of this tough time. Please tell everyone you know about my Ashley. Use her story to become bold enough to ask them all to pray. She needs you today. Thank you in advance for praying and for loving this little girl. I will never be able to repay you so please just know that I love you for loving her enough to care.

This should have been one of the happiest days. This was supposed to be what we had been working for. Once again my heart aches with disappointment. My heart longs for answers and understanding. It seems my heart just breaks over and over again. Maybe this time I will learn that nothing on this journey is what it seems to be.

Tonight Ashley's skin turned a bluish gray and her little limbs were lifeless. She was very "clamy" and sweaty. Her temperature would not come over 96 degrees. Her sats were down into the 30 and 40s at times. Her blood pressures were also lower than they have ever been. She worked and worked at breathing on her own, but in the end she just gave up. They are now placing her on the ventilator and she is leaving me once again. They have sedated her and will keep her down for the rest of the night. There will be no smiles, no giggles, and no tiny little voice calling "Mama". I don't understand. I don't have words. All I do is cry and I can't seem to stop. I want to scream but I don't know what to scream about. I want to pick her up and run away, but there is no where to run to. I am so lost and so hurt! Tomorrow we will start over. Maybe at the beginning. No one has any answers about where we will go from here.

I am regretting the fact that we told Blake and Allison that we had been discharged out of the hospital. They don't deserve the hurt they will feel. I sometimes wonder if they will ever understand why I am absent from their lives. Will they ever be able to forgive me. They love Ashley so much and Dave and I were so touched by their reaction to our good news. We should have used more wisdom and not have told them anything. Now they will suffer because of our choice. They were so excited about going to school tomorrow and telling everyone how good Ash was doing. What do we do now?

I don't know what to think about this day so it is very difficult for me write about it. I never had the chance to call and tell my family the good news. I guess this is why. My head is pounding and my stomach is feeling very sick. I wish I could re-write this page in her story. I guess we all know by now that the next chapter did not begin the way I had hoped it would. The words "We made it out" will have to be changed to "We have gone back in". Something tells me I am not going to like the way this one starts.

I can't say that I am excited about what lessons will come from this. I just can't allow my faith in all that I know to be true to waiver. I know He loves my daughter and I know He wants the best for her. I don't have to understand the reasons why, I just have to keep looking up and keep going forward. I just pray and pray that my Ashley's story will have a happy ending.