Our God is so Big...

Tonight as we were holding and playing with our little Ashley my sister began to sing a song to her that I had not thought of in years. As she sang the words to this song I was so touched by the message:

Our God is SO big, so strong and so MIGHTY
Theres nothing our God cannot Do!
The mountains are His, the rivers are His
The stars are His handiwork too.


As we sang to Ash we did the motions we used to do as children in church and she loved it. She especially loved the part of the song where we sang about the stars and then we would say ,"Plink, plink, plink" as we would hang them in the sky. She began to reach her little arms up to the ceiling to help us. I was so touched by the words of this song that I had not heard since I was a child, and my eyes filled with tears as I realized the truth that can be found in it. How humbled I was to realize that He has given me the job of teaching my Ashley how incredible He is. He really is big, and strong, and mighty. When I think that 5 weeks ago tonight He gave new organs to my tiny baby there really is NOTHING He can not do. It is amazing to me to know that He can do anything. He made the mountains. Who else can do that? He made the rivers, and made them all flow in the right direction. Is there anyone else with that kind of power? He made the stars and hung them in the sky. Not only to light up the night, but also to give us something of beauty to admire. Only He can create and hang stars in the sky! This same God created my Ashley, and He knew the struggles she would face. He also provided a way to help her through the struggles. He gave her a mommy and a daddy and a brother and a sister and aunts and uncles and cousins and grandparents and friends and neighbors and communities and thousands of others to pray for her daily. How amazing is this? I have no words to describe Him. He loves her so much it touches me in the deepest part of my soul. She has never struggled one day on her own. Even before we could get to her He was there watching over her and holding her close for me.

Tonight as I watch my daughter sleep I am also admiring all He has and is doing in her life. I am thanking Him for being who He is and for loving us the way that He does. Our God really is so Big.

Tickles and Grins

What a wonderful afternoon we have had with our sweet Ashley today. It has been such a turn around from what we experienced yesterday. As her Aunt Toni said, "She is just full of tickles and grins!" Ashley has played and grinned all day long. It has been so refreshing to watch her have a little fun with her toys today. I know that all of the prayers that go up for her everyday are being heard. I would have never guessed she would have had such a good day. She is very awnry and we love that. The more we say,"Ouch!" the bigger she grins. She loves to pull our hair! I can see my Ashley today and I am more than grateful.

The pictures from Ashley's scope are absolutely beautiful! The intestine looks so good. We will not know the cellular results until tomorrow, but it looks good so far. She loves Dr. Antonson the GI doctor who does the scopes. He is really good with Ash, and today I got him to admit that he loves her. It is hard not to love Ashley. There is just something about her that makes you fall in love with her. I so appreciate the liver and bowel team that work in this hospital. I don't think you could find a better transplant team anywhere. They are making a very difficult situation "doable" for us, and I am more than grateful for the role they play in Ashley's life.

We finally gave in and cut Ashley's hair this afternoon. I haven't told her Daddy yet so please keep it under wraps until I get a chance to talk to him about it. Ash had lost so much of her long hair, especially on the back of her head that it was necessary to trim off what was left. This goes against every mothering philospy I have when it comes to raising little girls. Allie was 6years old before I allowed hers to even be trimmed! I really had no choice. She looks much better now that the long strands have been cut off. I placed one of her new "bigger bows" around her head and took her out for a short walk in the hall to show it off. My nurses agree that this is what needed to be done. I am just praying that her beautiful hair will begin to grow back in as soon as she adjusts to the medicines. I will have David post pictures of her new look as soon as he gets here.

The PICU is looking absolutely full. A group of trauma patients came in today and I have no idea what happened. I was just told that I didn't want to know what was going on. So I have just been praying that God would touch their bodies and minister to their families. The waiting room is full of people who are definitely hurting. I know that the trauma victims were 12 and 15, but that is all I know. Please remember to pray for them tonight.

Thank you all for coming to visit Ashley's story today and for being such a big part of her life. We love you all and appreciate all of your prayers. May He bless you tonight and keep you all safe in His care.

Shame on Me!!

Please let me apologize for allowing myself to fall in to the deep, dark pit of self pity!! How ashamed I am after re-reading my post last night. I absolutely have no right to feel so sad. I am nothing but blessed in this life. How I wish I could go back and erase the ugliness that flowed out of me. I am so sorry for causing any of you to feel sorry for us. God is good to us on the sad days and on the happy days. He is good to us on the hard days and on the easy days. He is good to us no matter what circumstance we find ourselves in, and I owe Him more than what I gave yesterday. So let me please say I am sorry, please forgive me, and lets start concentrating on our blessings now that this is behind us.

This morning I found myself rocking the most beautiful baby. She was cuddled up on my chest and holding tightly to my neckalace. I was able to feel her breathing so peacefully as we rocked and I thanked God for allowing her to come of the ventilator and oxygen. As I soaked in her baby fresh smell I could not help but shed tears for my fellow parents who lost the battles for the lives of their children this past week. How blessed I am to still be in the fight. I pray that I will never take for granted the place that I am in. I know of so many amazing parents who would gladly trade places with me so that they could rock their little ones just once more. How blessed I am. I am blessed to be her mommy. I am blessed to have her to hold. I am blessed to be the recipient of another family's kindness in the midst of their grief. I am blessed to have a husband who cares so much about my broken heart to call this morning to see if there is anything he could do to make it easier. I am blessed to have so many who love my Ashley enough to check in on her daily and to pray for her constantly. I am blessed to have such wonderful friends. I am blessed to have amazing sisters and sisters-in-laws who come to my rescue. I am blessed to have such strong, centered, talented, beautiful, children to call mine. I am blessed He forgives me when I fail to see all that I am blessed with. I am blessed, blessed, blessed, and today I will concentrate on those blessings. Thanks for loving me even when I don't deserve to be listened to and loved.

Ashley will have a scope of her new bowel today, and we all know how much she loves to help with the instrument. I am praying she feels good enough to give them a hard time. I think she is more comfortable than yesterday and I am so very thankful for that. Ash's blood pressure is trending up so they will begin a new med today to help with that. Her labs are the same and we are praying to feed her soon to help her liver enzymes come down. We appreciate all you do. Your love, support, encouragement, and prayers are keeping us going . Thank you for sticking with us as we walk the long road home back to Longview. God Bless you all. Love, Trish

Answered prayers.

A couple from our church brought me a gift card to take the kids out to dinner last night and it was in an envelope. This man handed me the envelope and told me there was a gift card for dinner and a "little something from us" to help Ashley. That little something was an answer to a prayer I had just sent up to the Father yesterday morning. Thank you so much for that little something. We are so humbled and honored to be a part of a church family that does so much to support us through our challenges. I am so amazed at how God uses each of us to do His work. I am amazed at the generosity of His people. Thank you Lord for letting me be a part of Your church and thank you for using us and Ashley's Story to help us have the boldness to declare our faith and trust in You. Thank you for answering my prayers through a wonderful family. I lift this family up to you today and ask for blessings for them. In Jesus name, Amen.

Barbie Drews

Barbie, we would be happy to talk with other families who may be facing a transplant. We will work in any way to try to make the decision and process easier for them. Feel free to give them my work number and/or Trish's cell phone number. Thank You.

Comments Fixed

I have fixed the problems with the comments not posting. I was trying to limited the number of illegitimate comments that were being posted and in doing so I accidentally blocked all comments. I have changed it back to the old settings so comment away.

Missing Home

Our sweet Ashley is finally asleep. The doctors came in to see her tonight and saw how much she was struggling so they ordered some morphine to help her with the pain. Today has been one of the hardest so far. Ashley has been in pain and has cried non stop since the procedure ended this morning. My heart is broken for her. How badly I wish I could trade places with her. I am grateful that they finally have given her some help with the pain and that she has drifted off to sleep. If only I could fix this for her and make it all go away. I would do anything to spare her from all of this.

My heart is not only broken for her tonight, but it is feeling homesick. As I talked with Dave and the kids tonight I realize that we are now living two different lives. His life seems worlds away from mine at this point. We report to each other every day about how all of the kids are and try to stay connected, but many times we are distracted from the pressures that we are both facing. I know that we are strong enough to endure this time in our life, but it still makes me sad and it hurts to be so far away from their world. There are so many things that I miss about home. I miss the familiarity of our house. I miss the feeling of all is well and safe that I feel when I am in it. I miss the piles of laundry and sinks full of dishes. I miss the smell of candles burning on the mantel. I miss the chaos of our busy schedules. I miss shuttling the kids from here to there. I miss the laughter that fills the rooms. I miss the smiles on their faces. I miss the conversations I have with my son about baseball and his dreams. I miss drawing pictures on Allie's back when I tuck her into her bed. I miss the two of them running to Ashley's rescue when I put her down for her naps. I miss brushing Allie's hair. I miss fixing Tacos for Dave at least 3 times a week. I miss hugging his neck in the kitchen as he comes in from the office. I miss watching Blake and Ashley cuddled up on the couch. I miss listening to Allie talk to Ashley as they sit and play Polly Pocket together. I miss the strength I get from Dave and his reassurance that it will all work out. I miss my friends. The ones that live in my house. The ones that God allowed me to call my family. I miss all of this and a million other things.

I am praying for God to keep us close and for Him to allow my sweet Ashley to heal so that we can all be together soon. I am praying for Him to fill the emptiness and the lonliness that I feel apart from them. I am praying that He continues to give Ash and I the strength to hang on until they all come back to visit. I am praying that I am doing what is right by all of the children and that one day they will all understand how very much we love them. Tonight I am praying for my family. I am praying that His will may be accomplished in our lives. Good night and God bless you all and your families.

5 weeks Tomorrow, but Whos Counting?

Today as I sit with our sweet Ashley Kate it astounds me that we will be 5weeks out from transplant tomorrow. Even after all we have been through this past month sometimes it is hard for me to realize that she really did receive the organs she so desperately was in need of. We lived life for so long waiting and wondering if she would ever get the chance to be transplanted that this is a new learning period for us. I will forever be in awe of the precious family who gave so much to us. My prayer is that someday, some way I will be able to hug them and tell them how much their gift has meant to my family.

I don't think you can ever fully prepare yourself to walk down a road like we are on. You go through life thinking that your faith is strong and that your headed in the right direction, and then one day He takes you down a path that shows you just how much you NEED Him. I am so thankful for the lessons we are learning through Ashley's life. I am not sure He would have been able to teach us all that He has and is if we were not traveling this road hand in hand. Today the road has been a little rough for Ashley and for Aunt Toni and I as we struggle to help our sweet girl cope. Ash doesn't feel well after the procedure this morning and nothing we have done has been able to help her. We take turns at her bedside holding tightly to her tiny hands trying to keep her from digging at the new site. Her skin is red and irritated and she has several new abrasions and bruises that just hurt. It must be so difficult for her to understand why she hurts the way she does. I am so thankful that someday we might be able to put all of the hurts and all of the boo-boos behind her, and that she won't remember the hard days. I look forward to having lots and lots of good days to replace all of the yucky ones she has endured.

After 5weeks of living in the PICU, life has taken on a sence of normalcy for me. We have a routine now, and the things that we do each and every day have some what of a schedule. After rounds this morning we developed a plan for the next couple of days. Ash is receiving a dose of medicine to help her cope with the "tremors" a couple of times a day. It seems to work for a little while, but once it wears off it is so difficult to wait until time for the next dose. I am so thankful that Blake and Al do not have to see their baby sister this way. I know their tiny hearts could not bare to listen to her cries. On Wed. she will go down for another upper GI to see if anything is emptying out of her stomach. We are praying that all will be opened and flowing through. If so then we will be able to feed Ash through her feeding tube. This mornings labs were not very pretty. Her new liver is struggling a little with all of the TPN she is on and she desperately needs to have food to help the bile flow out of her liver. If things are not opened then we will begin discussing the next surgery to try and remodel the opening. I am choosing to give this one to Him. I can't even imagine going back into Ashley's incision for the 4th time.

I think the biggest lesson I have learned during this experience is how imporatant prayer is. The prayers of those who have come to know my Ashley can not be replaced with anything in the world. The peace and comfort I feel when I know that people are praying at all times of the day and night for my daughter is unexplainable. I cherish each of your prayers so very much. How wonderful it is to KNOW that we have a Father in heaven who never sleeps and is never too busy to listen to the crys that go out for my daughter. I love Him for allowing me to "know" each of you through Ashley's life. I love Him for giving life to Ashley not once but twice. I love Him for loving me first, and for not needing to know me, but for wanting to know me. How amazing it is to have a friendship with the One who created my Ashley. I will forever be grateful for the lessons on prayer and its power that He is teaching me. Thanks for loving her and for loving Him.

Crayons on the wall.....

I sometimes sit and think about what the future holds for our family. I don't like to watch my little Gherkin go through any more pain than she already has so I have been somewhat of a pushover. I am always trying to protect her from more pain. Her Physical Therapist (Sue) just laughs at me and tells Trish what needs to be done because she knows I don't want to do anything to make Ash cry. Trish just keeps telling me that one day we are going to have to "parent this child." "Yeah, OK, one day but not today" I tell her. So today I was just daydreaming of when she comes home. I see her awnry attitude and know that the day will come when there is a beautiful picture drawn on the wall. The funny thing is I already know how I am going to respond. I am just going to tell her how beautiful it is and then try to teach into this mess how we should draw on paper not walls. What else do I have to look forward to? Spills, crashes and bangs from the other room? Innocent puppy dog looks of who me? I didn't do it? Yep, probably all of this and alot more. But, you know what, I am looking forward to those days. I would much rather have a Gherkin drawing on my walls in TX than one fighting for life in NE.

I have checked the calander and planned the next trip to Omaha. This time Blake and I will be going in just over a week. I am already making plans and counting down the days. It has been so long since Blake got to see his mom and baby sister. I know he is very excited.

DAVE

Letting Go to Let God...

I survived the night and feel fresh and renewed to take on all that today holds for my sweet Ashley. Last night I realized that I was at the end. I had gone as long as I could go without resting well. I so desperately needed to lay down on a bed and allow myself to sleep. Really sleep. This is so very difficult for me to do. I have spent almost 15 months jumping at the sound of any movement, of alarms, of coughing followed by vomitting, and by any wimper that sounds an alarm that something is not right. Finally I allowed myself to let go and let God hold her through her Aunt Toni's arms and walked out of the PICU to my room and to my bed. I have only slept on this bed during Dave's last visit while he was left to watch over Ashley. As I laid in the bed I thought to myself this is useless. I can't will myself to turn off all that was running through my head. I was planning on just stretching out and then walking back over to get my sister and tell her that she might as well get a little sleep herself. Then I heard a preacher on T.V. say that " The Father was big enough to take care of whatever I was carrying. If I would only trust Him and let Him take care of it, then I could walk away with joy in my heart and a burden lifted from my heart." As I laid there feeling complete conviction for once again thinking that I had to be the one to take care of her, I realized that I had picked up this burden AGAIN. I say over and over again that I trust Him, but then I continue to carry this load. This very heavy load. So I prayed and asked Him to once again take it from me and give me the peace that I needed to sleep and just rest in the knowledge that He was in control of My Ashley through the night. Before I finished my prayer I heard the alarm going of this morning. Wow! I have slept for a full night and I feel renewed and energized!

This morning Ashley will lose the line in her little neck. As a result of a mistake that was made and then covered up and not brought to anyone's attention. They will sedate her to make her more comfortable as they change out the lines. So once again she will be at risk for infection which at this point is so very dangerous. I know that my faith and my testimony of my faith are on trial right now. With every muscle in my mouth I had to clamp down on my tongue last night as I watched the one responsible come in to help with my Ashley. (This was not my nurse Emily who was takeing care of my Ashley. She is one of my favorites and she is great!) Oh how tempted I was to open my mouth and let flow all of the feelings that were welling up inside of me, but how thankful I am that I did not. Many years ago David and I learned something that we decided would be our family's motto. It was written on the board in our classeroom from day one and it was still there as we disassembled that classroom this fall as the kids went on to school. In our family with our children this is our goal: We always do our best and do what is right because: 1. We represent God to the World. 2. We represent our Family and our Family name to the World. 3. We represent ourselves to the World. How else can we show that Jesus lives in us if we do not follow these simple guidelines? In everything we do we must remeber that He needs to shine before we do or say anything that might take away from our ability to testify about His goodness. This is not always easy and we are obviously not perfect, but it is how we strive to live in our home. How can I teach this to my Blake, Allie, and Ashley if I can't live it myself? Oh! how I am being tested! The fact that Ashley will endure another set of difficulties because of a careless and irresponsible mistake is breaking my heart, but I must keep my mouth and my toungue under control. This is not easy for me. It takes Him living and working in me today to keep my mouth shut.

Today I will Trust Him to take care of our Ashley just as He was so faithful to do through the night. Today I will ask if you think of her please pray for her tremors and for the line procedure to go well and that she will stay free from infection. If you remember I would appreciate a little prayer asking Him to help Ashley's mommy keep her mouth shut and only use it to smile. I will be praying the same. I love you guys for checking on her this morning. I pray that He will bless you and guide you through today. Have a blessed one. Trish

We are not alone

Today I have once again realized that Dave and I are not alone in this fight. Every where I turn I am finding more and more stories of families who are struggling for another day just as we are. How my eyes have been opened to the reality that we are not promised a lifetime with our children. They truly are a gift from the Father to be enjoyed for the time we are given. What an important job it is to be given the role of a parent to the littlest of His family. How precious each moment with my children has become to me. With Ashley I try so very hard to live every moment. Never wanting to sleep, or to put her down, or to allow someone to watch over her in my place. I want to be with her every minute of her life so that I will have no regrets. How proud I am to be her mommy and how proud I am of each little accomplishment. Things I used to take for granted are now so monumental. My heart longs to be with Blake and Allie too. Time away from them has been one of the most difficult parts of this walk. How do I get back all the time we are losing? I know this is impossible and I can hear in their voices each day how tired and weary they are becoming. They miss Ashley and they desperately want for her to come back home.

Today I have learned of 2 more families who have lost the fight for their children's life. My heart is broken for their loss and I have no words to minister to them. I have never met these families but yet I feel such a bond with them. My Ashley is here with me and just yesterday their children were with them. There are thousands of us out there living each moment of our children's lives with the knowledge that they may leave us any day. How do we memorize every look, every sound, every smell, every everything about them? There are so many things I want to never forget. Things about Blake and Allie and Ashley that only I as their mom knows. My mind races trying to remember all of the special times we have had together.

If only He would tell me of His plans for my family? Would this give me the peace I so desperately search for at this time? I know I am better off not knowing and allowing Him to guide me one moment, one day at a time. How I wish I could take the pain from the families who are feeling such loss tonight. How I wish they had their babies to hold and rock and tuck into bed tonight. I don't think I would have the strength to endure what they are going through. I am just so grateful. I know I say everyday how very thankful I am for each day with my sweet girl, but I can't say it enough. He has given me the most wonderful little girl and she is a GIFT. I did nothing to deserve her. I only asked for Him to use me in the life of a child. He did not owe me anything and He did not have to grant my hearts desire. Why did He smile down on me? I have no idea. I only pray that I do not fail Him or her. I pray that I am the mommy to Ashley that He intends for me to be. I pray that I am the mom to Blake and to Allison that He wants me to be. I pray that I am the wife to Dave that He wants for me to be. I pray that I can be the sister thay I am supposed to be. I pray that I am the friend that He wants me to be. I pray that I will be the witness that He deserves me to be. I fall so short in so many of these areas everyday, and I pray that He will give me the strength to be the person He wants me to be.

Tonight my heart hurts for all of the families who have lost their children, but yet it rejoices for them for the times that they had with those precious babies. As I lay my head down tonight I will pray for all who have lost and I will thank Him that He chose to give us Ashley for another day.

She is really smart!

Well today has been a long one for Ash. She is trying so hard to be sweet and to play, but she is really shaky. They have given her another dose to try and help her stop shaking so much but she is just not able to rest. I was busy cleaning her up and changing her p.j.'s when I noticed that her entire little body is going through the withdraws. Her feet, her legs, her chest, her arms , her hands and her little head are shaking. She is just so frustrated. She is holding on to some toys and things but she is not really able to transfer them from hand to hand. It was so sweet when we placed the baby in the mirror back in her crib, she looked for a minute then waved once or twice and picked up a toy to share with her.

Even though Ashley doesn't feel well she never ceases to amaze me. She saw me opening a new hairbrush this afternoon and reached out to take it from me. She then proceeded to rub it back and forth across the top of her head trying to brush what little hair she has left. I was so surprised that she knew what to do with it. Later on I was straightening up her crib and she saw me pick up a stethescope that has been laid in there. She reached for it and the grabbed it with both hands and tried so very hard to put it in her little ears. Can you believe how smart she is? I am so proud of her for paying such close attention to others. We have started to play her Blues Clues movies again and when she is done watching them she waves bye-bye to the DVD to let us know to turn it off. The nurses are walking up and down the hall singing the Blues Clues theme song. I am so glad Ash is rubbing off on them.

We are having some difficulty with Ashley's central line and I am trying so hard to not say the wrong thing. I finally just asked my nurse to please make a note in Ash's chart that I have requested that no dressing changes be made while I am sleeping in the chair. I would like to have them wake me up and let me know. It looks like we may lose this line today because of a mistake that was made the other night and covered up under the dressing. I know it was done during the three hours that I fell asleep because of the date and initials left on the dressing. If I could stay awake 24 hours a day I would love that. I understand that mistakes can be made, but I do not understand not communicating that to a parent. I am really being tested on this issue and I am trying not to fail. They have taken an x-ray to check the position and then they will make a decision whether or not it has to be pulled. I hate to see Ash go through anything else, but I know that He is with her and that He is taking care of her.

The Tarheels lost in the 1st round this morning and from what I hear they just didn't bring their "A" game with them to the field. Thats o.k. though because we know they can't win them all every weekend even though that would be really great. I know they had fun playing and I am sure they will learn from this loss. Sometimes experience is worth sufferring through the defeat. I look forward to talking to Blake about the tournament. Allie has finished competing and is now waiting for the awards to be presented. Her Daddy said she was absolutely beautiful today and he thought she performed great. When I spoke to her this morning she told me he let her do her own make-up all except for the mascara. Then Dave told me he put Al's black stuff on her eyelashes and that he was an expert at putting that black stuff on. He may have found himself a new profession! I am a little worried about how the whole make-up thing really looked, but this is one of those areas I am haveing to trust God to take care of for me while I am away. I am sure she did a wonderful job. I am really blessed to be allowed to call these little people mine. I am so proud of who they are and I miss them so very much. I am going to go sit with my little blessing and watch her try to be her sweet self. I pray she will get some rest in at some point today because I can see how sleepy her little eyes are. Thanks for coming to her story today and for remembering her in your prayers. We are blessed to know you all. Trish

Pink Balloons...

I am always so thankful when morning comes. It is evidence to me that He has allowed me to spend another day with my Ashley. Night time is over and the sun is now awake. This always brings me joy. Ashley and I had an o.k. night. She woke around 3:30 this morning and wimpered and struggled the rest of the night. She has just now fallen asleep again with the aid of a little medication to help her relax. I am afraid that we are seeing signs and symptoms of withdraw in her little body. After almost 5 full days on very heavy meds she now is experiencing some tremors in her hands and feet. She is trying to keep her hands from shaking by clasping them tightly together. She is also clawing and poking her little eyes with her fingers. I have not been able to console her, so I just hold her as tightly as I can a pray for her while she struggles through. I am hoping this issue will resolve quickly because she is miserable. Please pray that she will gain control of her little body again so that she may start to relax.

Before Ashley woke up early this morning I found myself dreaming once again of pink balloons. Ashley absolutely loves balloons, and I love the color pink. Every hospital stay we buy her a bundle of pink balloons to enjoy. We have so many of the sweetest pictures of her fast asleep holding tightly onto her balloons. I love this is about her. For several weeks before receiving "the call" to come to Omaha I struggled with nightmares every time I would close my eyes. I could not escape the room full of Ashley's pink balloons. There were always people sobbing and more balloons than I could count. I knew where I was and it was not the outcome I wanted for my Ashley's life. I would wake in a panic and try to escape the fear that had overcome me. Last night I had a dream about Ashley's pink balloons, and it was the sweetest dream. No longer was it fearful because Ashley was older now and was playing in the room full of balloons. All of our families were there along with all of the people who have become like family to us through Ashley's story. We were not sobbing. We were celebrating the life of my little one and she was having so much fun. How wonderful it was to realize that the outcome was so different then what I had feared. He had given my sweet Ashley a second chance to live, and she was doing it! I have no idea what the dream last night really means, but I think it showed me that I have been able to let go of some of the fear that I have lived with for so long now. I don't know how many days He has planned for my daughter's life, but I plan on filling those days with plenty of pink balloons for my Ashley Kate. On her 1st birthday we released pink balloons with prayer cards attatched to them. At her campaign launch they released pink balloons for my Ashley. On Nov. 4th at the Stroller-A-Thon there will be pink balloons to send to heaven to show our thankfullness for all He has done and is doing for Ash. Everytime I see pink balloons I think of my daughter and all of the wonderful things He has planned for her life. I hope and pray that the next time you see a pink balloon you might think of our Ashley and stop to say a prayer for her. Just a little piece of Ashley's story I wanted to share with you today. May God bless you and grant you precious time to spend with your families. I love you all. Trish

Lullabyes and Goodnight...

Our sweet Ashley Kate is now sleeping soundly in her crib. How blessed I am as I sit and look at her all safely tucked in under her pink blankets. She is so tiny and fragile, but yet she is now so big and strong. As I walked through the hall of the PICU tonight I realized that even though Ashley looks so much bigger than when we arrived she is the tiniest of all of the patients on this floor. She is now weighing in at around 15 lbs, and she will be 15 months old on the 4th.

Tonight our evening was filled with lullabyes as we took turns rocking Ash to sleep. My mind always drifts to thoughts of our precious donor baby as I rock my little girl. I know I will never cease to think of that little one as I watch mine grow. How I love the one who gave so much to our Ashley. I hope to find the right words to put on paper to send to the family who loved my daughter without even knowing her. I am praying He will help me to write to them. We pray for them each and every day, and I will forever be grateful. Father please allow them to feel Your presence and Your love as they lay their heads down tonight.

As I drove through Omaha today looking for a salon I was amazed by the beauty that I saw all around me. The trees are dressed in beautiful fall colors and the grass is still a picture perfect green. The sky was filled with the most amazing clouds and the breeze was just enough to cause some of the leaves to fall and spin to the ground. It is really beautiful here in Nebraska. The fall is my favorite time of year. I love the sights, the smells, the piles of leaves, and all that is associated with this season. As I drove along the road my heart smiled and then became a little sad as I looked over into the park and watched a family pose in front of the most amazing red bush for their Christmas card photo. How much I miss spending this time of year with my family. Every year since Blake was born we have spent a day playing and frolicking in the leaves. The kids look forward to this day all year. We love to make the biggest piles you have ever seen and run and jump into them all together. We always take the most wonderful photographs for our scrap books and many times we have used these photos for our Christmas cards.

Last year our family Christmas card picture was taken inside Ashley's hospital room in the NICU. It turned out o.k. as far as pictures go, but I loved it probably more than any other we have ever taken because it included our tiny gift from God.(you can see it on the photo page of Ashley's 1st Christmas). I remember talking to our nurses and we were all saying that next year we could take a great photo because our Ashley would be home for Christmas. Oh my did He have something different in store for us. I would have never guessed we would spend her 2nd Christmas in the hospital as well. So I guess that when everyone comes on their next visit I will be trying to orchestrate another family photo in her hospital room. I really don't mind. Just think of the memories that will flood back to us in the future as she grows. I can just hear us laughing and talking about the difficulty of trying to take these photos and not make them appear as though we were really in the hospital. Everyday is a memory in the makeing and these are just that. I have already begun to play Christmas carols in Ashley's room and the nurses think I'm crazy. I'm not crazy. Anyone who knows anything about me or who has ever been to our home in the 1st week of November knows that I believe Christmas is just too wonderful to only celebrate for 1 month. I love it so much that I start to get in the mood by late October. Silly huh! Anyway I have already asked Dave to mail Ash's tree to us so we can start decorating.

I love you guys and I apologize for rambling on and on and on. Today has just been such a blessed day I had so much to share. The Tarheels won both games today and are preparing for a tough day of competition tomorrow. Allie is so excited about her competition I bet she won't be able to sleep tonight. I can't wait for Dave to send me the photos of her in her new uniform. I am going to go tuck myself into my "favorite" recliner next to my Ashley and try to get some sleep. Thank you all for your prayers today. Goodnight

Breathing so Peacefully...

It amazes me as I watch God continue to restore my Ashley over and over again. To look at her today you would have never imagined the nightmare that we lived this week. I am so thankful that we seem to be turning a corner once again. She looks so peaceful and so beautiful as she sleeps. Ash is off of the oxygen on a trial basis and she seems to be doing well. I am so excited! I wish you could all see her right now. She is tucked back into her crib with her Care Bear under her little arm. Her face is no longer swollen and she looks just like my Ashley again. Her beautiful eyes, her rosy cheeks, her tiny nose and her pouty little lips have all returned. Her strength, the strength He gives to her everyday, is amazing to me.

I was able to get out and get my hair done today for the first time since we came to Omaha. Ashley was tucked safely in Aunt Toni's arms and they were rocking each other to sleep, so I slipped away and found a salon and took a gamble. I am so leery of going to someone other than my hair stylist Jessie at Vargas back in Longview. I was absolutely desperate and could not have gone much longer. The gray was showing along with my roots and I was afraid Ash was going to become embarassed of her mommy if something wasn't done quick. So I found a Stylist who got me right in and within two short hours I have become a new person. Dave wouldn't even recognize me. It was so great to get to visit with someone new about my Ashley. I love how He uses my sweet girl to give me the boldness to speak of Him without reservation. When you talk about Ashley's story you can't help but tell of all the wonderful things He has done. It just spills out of you and before you know it you have shared your faith. I am so thankful He is teaching me how easy it is to talk of Him even to complete strangers through my daughter's life. Some people just look at me like they are so confused by all that I say. How can I be so thankful when she is so sick? I just ask them to look at Ashley's story and read back over all of the things He has brought us through and to think of all the things He is going to do. That in itself is something to be grateful for. I know this is not easy, but I also know that we are not alone during this time in Ashley's life. He gave Ash to us and I love Him more and more everyday as He reveals Himself to me more and more.

I have no idea what tomorrow holds for my Ashley, but today I am grateful for the peace that He is giving to her. I have learned not to worry about the future, but to be so very "present" in the present. I am just loving my Ashley one day at at time as He gives them to us. Today is a good day and I am grateful. God bless you guys. Thank you Longview Too Ambucs for all of your hard work selling those raffle tickets for our sweet girl. We love you guys and we could never thank you enough for all you do for us. Take care. Trish and Ash

Morning News From Ashley

This is a good morning for us here in Omaha! Ashley has just been taken off of the ventilator and she is only on 1 liter of oxygen right now. She is holding her sats at around 98 and we are thrilled. She looks like my Ashley again. Her swelling is almost gone and she can open her beautiful little eyes. She is not happy with me at this moment. She is refusing to look at me and will only look at her Aunt Toni. I think she is blaming me for all that she has had to endure this week. It is really o.k. I am just so glad to see that her little stubborn personality is coming back. I can take a little attitude from her and she has every right to be upset. It really has been a tough week for her. I have not been allowed to pick her up just yet,but as soon as the blood gas comes back with good results then she is all mine. I can't stop smiling this morning. How thankful I am to have come over another bump in this road we are on. God is so very good to us and I know that He has protected our Ashley this week while she was gone from us. My heart is overflowing with joy today as I anticipate all of the precious moments she and I will have today.

Thank you for praying us through another tough week, we are hoping to make next week full of nothing but progress. We are praying to avoid the operating room and to try and put a little food into her tummy. I am nothing but grateful for another day to spend with this gift that God chose to make mine. Take care of your babies and enjoy every moment. We look forward to seeing you all someday. If not in Texas, then certainly in Heaven. God Bless you all for loving Him enough to love my Ashley.

Things I know...

How beautiful to see my Ashley begin to open her eyes. This is one of the most beautiful things I have ever seen. I have missed her terribly the last few days. It is so hard to explain the way it feels to look over at her and not really see her. She is now beginning to reach up for me to pick her up and oh how I wish I could. Her little arms are still in restraints and when she hears my voice in the room she reaches out for me to hold her. She doesn't even open her eyes to look to see if it is me she just knows that it is. So instead of picking her up I just bend down and kiss her fingers over and over again. She begins to settle and for now that seems to be helping. How blessed I am to have those tiny fingers to kiss.

I have had so many hours to sit and think as I have waited for her to come back and my mind is repeatedly going back to the day we were told that without a transplant Ashley had only 6 months to live. This was the hardest day of my life. It was my 32nd birthday and we had driven to Childrens Hospital in Houston for a second opinion. As the doctor talked to me my mind was racing and my heart was screaming. How could this be? We had fought for so long and struggled through so much. Never in the 9 months of Ashley's life did I think she might not live. I knew in my heart that if she could just come home to our house that she would get better. I am not sure if there is a word that decscribes the feeling you have when you are told that one of your children is going to die. Desperation? The pain is so great! A few days later I came into the kitchen to find my precious husband huddled over a sink full of dishes. His hands were covered with soap and his eyes were pouring tears. His shoulders were shaking and he was weeping from the deepest part of his soul. There was a song playing and it was talking about" how you would have thought by now that He would have reached down and wiped our tears away." As he listened to the words of this song by Casting Crowns he realized that we both honestly thought that our God would have fixed this for our baby by now, but the truth was that He had not. Ashley was not getting better and better, the truth as painful as it was to admit is that she was dying, and as her parents we could not help her. As we stood in the kitchen huddled together in a puddle of tears we continued to listen to the words of this song. That night we decided that even though we were in the middle of the ugliest storm of our lives we too just like the song said "Would praise Him in this storm because He is who He is no matter where I am". When you reach the place in your life when you truly see that no matter what happens to you good or bad He is still God and He is still to be praised you will never again be the same. When you see and understand that your children really belong to Him and that He is the one who controls their every breath you will never look at Him or them the same way.

I have often wondered why it took the illness in our precious Ashley's life to teach us this. Why didn't we get it before now? I don't know the answer to that question, but I do know that He is still God. I do know that He has given us a beautiful baby who He uses to teach me new things about Himself every day. I do know that without all that Ashley has endured I would not be the person I am today. I do know that He gave my Ashley a second chance at life just in time. I do know that she had lived 5 of those 6 months and she was running out of time. I do know that I will never again fail to see who He really is. I do know that I seek Him more and I rely on Him more than I ever would have without my Ashley's sufferings. I do know that He is using my daughter to bring us closer to Him. There are still so many things that I don't know and may never know, but I do know that He loves me and He loves Ashley and He loves all of you too.

Up Date...

Things are progressing for Ashley very slowly. She is beginning to wake up and is now moving her arms and legs. She is trying to open her eyes, but there is a severe amount of swelling in her face especially in the eyes. She has not been able to do more than just peek out of them for a second. She is beginning to cough and move a lot of the secretions out of her lungs, and we are very thankful for that. The more she can cough out to be suctioned the less chance of her developing a pnuemonia. The only recognizable part of Ashley's face is her beautiful eyelashes. I have not wanted to take pictures of her like this because it frightens me to see them, but I finally gave in and took a couple for David to see. Ash is breathing above the vent settings and this is very good. She is takeing more and more breaths on her own.

I have been rubbing her little feet (which we all know she loves) and her hands with lotion. When I do her hands they grab tightly on to mine and tell me how much she loves me. I love this about Ash, and I thank God that He is showing me she is in there and trying to come out. I was hoping to see all of her by tonight, but I think His plan is better than mine. Instead of coming to quickly which could panic and scare her, He is allowing her to continue resting as she wakes up in His time. The peace that He has given to us today is a gift. The last few days it has been so difficult and scary, but today I just know that this is going to be o.k. She is going to come back to us with all of her awnry self and give them all a hard time again. I am looking forward to the day that she begins to throw her pink sponges to the end of the bed.

Dave and the kids are on the road to Dallas again this weekend. They are so excited to be traveling with friends and to be staying in a hotel again. They love hotel rooms! They are so silly. Over the last 14months I have learned to hate hotel rooms and love my room. Blake and Allie just don't understand why I feel this way. I am looking forward to hearing how they do in competition this weekend. How I wish Ashley and I could be there to watch. We really miss watching the Tarheels play! Good luck you guys.

I spoke to Skylers mom and he is just having a hard time breathing on his own. Last night he was having to work too hard so the safest thing to do is just give him a little help on the ventilator. I did see him grabbing some toys out of his Daddy's hands this afternoon and that made my heart smile. I am so glad his parents are believers and that they too have an amazing support system. God really does take care of us. I have not seen Chloe's parents yet today, but I am praying that she will get over the hump and start to improve soon. Yesterday I saw her and she was even more swollen than Ashley. Sarah told me she had gained 4lbs in fluid over night. How frightening that is for them. I am asking God to keep watch over all of our little ones who are struggling so hard.

God is still so very good to us and He continues to bless us through the midst of the storms we face. I know I am never alone even when I begin to feel so desperate. Thank you for your encouragement and the scriptures that you leave in my guest book. They never fail to lift me up at just the right times. You are all so very loved and appreciated for all you do. I hope to hug the necks of all who we have never met someday soon. May He bless you all and your families tonight.

Watching and Waiting

Good Morning from Ashley's "nursery" here in the PICU. The surgeon was commenting on Ashley's monogrammed linens and her "set up" in her room. I just politely smiled at him and said if I can't take her home to the nursery then I had to bring the nursery to her. It does look like the color pink has exploded all over her bed and her name is on every one of her blankets thanks to her Aunt Toni and her sewing skills, but I believe if shes a girl she ought to look and feel like one even when shes sick.

During rounds I felt like we were all on the same page today. The radiology report from yesterday says they feel there is a complete blockage of the piloris opening in the stomach, but after thinking long and hard about it we have all decided to watch and wait. We would hate to do a major surgery and "remodel" more of Ashley's anatomy if it doesn't absolutely have to be done. Some of the doctors feel it might just have been traumatized and swollen over due to the transplanted organs resting against the stomach or due to the severity of the surgery and scope done on Tuesday. This was the best possible news I could have heard today. I would like to spare Ashley from another surgery if it is possible. The plan is to wake her up, take her off of the vent, try to feed her again early next week, and see if anything can go through by then. We will do another GI series and look to see if anything has changed. If we have to do surgery then we will, but I would like to be sure this is what she has to have done rather than rushing in to it. My prayer is that if this is His will He would do astounding work in Ashley's body over the weekend and amaze everyone . Once again I will wait and see what the Lord will do. I am feeling positive about the possibility of not going into surgery.

We have already begun to try and get my Sweet girl to begin waking up. The paralytic drug has been turned off and we can see her little fingers beginning to move. I am so excited at the possibility of "seeing" my Ashley at some point today. They are giving her the spa treatment right now. A shampoo, a bath, clean pink jammies and a massage. This morning I manicured her little nails. When she does finally wake up she will feel like a new girl. I can't wait to start playing those Blues Clues videos. I have high hopes for us today and I look forward to spending the another day with my Ashley.

Thanks for visiting us today, and for checking on my baby. I love you guys and would cherish your prayers for her today. Praying that she can master breathing on her own again soon. I will post an update later this afternoon. God bless you guys!!

Prayers for Baby Skyler

I really have no idea what is going on across the hall from Ashley's room, but I know that Baby Skyler is in there and there are a lot of people working on him. I can see that he is back on the ventilator and it doesn't look like a normal night in the PICU for him. I am asking each of you who may wake and see this post sometime tonight to please, please pray for God's protection to surrround this beautiful, baby boy. His mommy has the most beautiful smile and the sweetest most sincere voice you have ever heard. She is so faithful to ask me how my Ashley is each and every evening when she comes to visit and she assures me they are praying for Ash. How unselfish she is to spend part of her prayer time on my daughter when I know how fragile her son is. I am praying for him tonight and asking the Father to touch his tiny body with His healing hands. I know there is a plan for all of the children and families who "live" here on this floor in the hospital.
As more and more people come to know my Ashley's story and visit her journal each day I am touched beyond what words I can describe by their kind words and sincere prayers for my baby. Oh what I have learned about the goodness in people through my precious babies life. How thankful I am that He is teaching me to look around and realize what is truly important in this life. People are important. Souls that are hurting and struggling in their day to day lives are so very important to Him and they must become equally as important to me. To see others and to love others as He loves them is life changing. To appreciate the good that they have to offer and to be able to look past the bad and not place a judgement on someone who may be walking a difficult road is so important. If only I could love them all with the love of Christ. If only I could show them the miracle of Ashley's life and the testimony that her every breath tells of Him. I am not the same person I was before my Ashley was born. I am changed and I pray that I will remain changed. How I love Him for allowing me to love this little girl. How I praise Him for creating her to be exactly who she is. If we were not traveling this road with our Ashley we would have lost so much. I am so glad He called me and choose me to be her mommy.

Watching her sleep...

Well Ashley has been asleep for more than 48 hours now. I have not seen her move even a muscle since she came back from surgery on Tuesday evening. They did not wake her from the paralytic state this afternoon. The stress from all of the moving during the GI series was very hard on her and she has been allowed to continue in her deep sleep. Her little eyes are very swollen and they look like they would hurt. Today the nurse told me that not just her eyelids but the eyes themselves are swelling. They have given her some lasix to help pull some of the fluid off of her but she is still very puffy. We have moved her out of her crib and back onto a regular size hospital bed. The baby in the mirror that Ash loves to play with no longer lives in her room. I hope that as soon as she feels better we can move her back to the crib and she can see her favorite little friend again.

I miss Ashley. I can see her little body, but I can not see her anymore. There are no smiles, no patty-cakes, no pink sponges, no Blues Clues and no toys around her. I touch her hair and wipe her little eyes with a cloth. I kiss her on her head and whisper to her how very much I love her. It is so emotional as I try and talk to her. How I wish she could look at me or respond to me in some way. I often wonder what her brain is thinking. Is she dreaming about going home? I imagine that He is there with her. I like to think that she can hear His voice even if she doesn't hear mine. This is one of the hardest times I think we have been through. It is really frightening to see no movement or hear no sounds from her. I have had to leave her in His hands and I know this is where she needs to be right now.

The families in the PICU are changing. As children become stronger they move to the next floor. Chloe and Skyler are still here with us. There is also another little boy here from Tx. that was transplanted 2 days after Ash. I will not print his name because I don't have permission from his parents, but they are very sweet and very precious. They too are praying for my Ashley Kate. I have not been able to talk to or meet any of the other families. So much has happened with Ashley that I feel a little guilty that I don't even know the others. Today I was told another family from Tx. had a little girl transplanted night before last. I hope to get an opportunity to visit with them sometime. One thing I have learned is that some of the best gifts in this life don't cost anything but can mean so very much. A smile, a hug, a kind word, a prayer, all of these are so very precious and so very easy to give to others. I pray that a day never goes by where I fail to offer these priceless gifts to those around me. How they can minister to a hurting heart!
I am going to go sit by our Ashley and lay my head next to hers on the pillow. I wish I could hold her tonight, but for now I will be content to hold her hand. I will soak up each minute that I am with her, and I will try so very hard to memorize everything about her sweet face. She is so beautiful and so amazing. I am so happy to be her mom. Thank you for spending another day with us as He continues to write Ashley's story upon our hearts. Good night.

Nothings going through..

We have just returned from Ash's upper GI and the results were what we had expected after Tuesday's surgery. None of the barium was able to empty out of the stomach. There seemed to be no movement at all, and after a length of time they finally just drew it back out through a syringe. These test results confirm that we must have an additional surgery. There are several options on the table and the team of transplant surgeons will meet tomorrow and try to develop the best plan for Ashley. I have asked them to draw me a detailed picture of what they decide to do. Sometimes everything they say begins to run together in my mind and it is difficult for me to explain. This is when David's education and knowledge help me tremendously. I am afraid that without him here I will not be able to give him a good idea of what they plan to do with Ash. Tomorrow we will no a little more. They are talking about bringing Ashley out of the paralytic state tonight and allowing her to just be sedated.

The stress of today has seemed so thick. I am just so sleepy and tired, but I have been encouraged by several things today. I received a phone call that included a story from the mommy of a child who I love so very much, and it did my heart good to hear how much she cares for my Ashley. Thank you for calling and sharing it with me, and thank you for wearing all those band-aids to help Ash's boo-boos. I needed that today. The stories that are told to us about all of the little ones who love and pray for Ashley touch me deep in my heart. I know God hears their prayers for our Ashley and they are so sincere when they talk to Him. I am so thankful to all of you who have allowed Ashley to become a part of your families, and to become a part of your childrens prayers. I also received a gift in the mail today from a mom who like me has fought for every day of her childs life. I know she understands so much of what we go through with Ashley and I would like to thank her for the neckalace and for all of the thoughts, prayers, and miracles that accompany it. I will wear it everyday until we come home. It is a beautiful reminder that our children are miracles created by the God who can do miracles.

Ash is in there even though I can't see her. I can just imagine all the strength she is gaining while she rests on the ventilator. Strength that she will need to fight her way back from the upcoming surgery. I love that I can report to you that I was just told that once again Ashley's scopes show no sign of abnormal cells and no sign of rejection. She is officially one month out from transplant and one month into living her new life. I know that with His strength and His help she will come back from this and she will be able to one day tell us of all the wonderful things He has done. I love you all for loving my Ashley. I love you all for coming time and time again to her story. I love you all for being willing to open your hearts to a little girl who He gave to not only me but to all of you as well. She is amazing and she is a miracle!

Today's events

Morning rounds are now over and Ashley is scheduled for an upper GI series at 1:00 today. I will be able to go with her and someone will discuss the results and a plan of action with me late this afternoon. They assured me that she would not go to the operating room today. This morning the x-ray revealed that her breathing tube is in to deep and this has been causing a lot of the problems she has been having while on the vent the last couple of days. They re-positioned it once and took another x-ray, but the result showed that it was still in the wrong place. So they are now trying again. If they leave it where it is there is a possibility of long term damage to her lungs so it is necessary to get in the right place. This is very stressful to watch because I have been warned that if this tube is pulled out there is no way to put it back. I have been a wreck this morning. I am praying that she will be o.k. and that they will get it placed correctly this time. Ashley is very swollen in her face this morning and she has developed some sort of rash over her forehead and it is spreading back onto her head. They have not started anything new this morning so we are not sure what is causing the rash. She has no fever and no positive cultures for infection. These are both huge blessings. Her blood gases are good today so they have begun to wean her oxygen back slowly. I will post to let everyone know how she does during the GI series this afternoon. I am praying for a smooth process and no more trauma to Ash. Thank you all for checking on my girl this morning. I appreciate your continued prayers and words of encouragement. Have a blessed day. Trish

Sleeping Tight...

My Ashley is still out cold. She has not been allowed to wake at all since going down to surgery yesterday afternoon. Tonight my heart feels so very heavy as I watch her sleep. She has no movement at all. I touch her little face and she has no idea that I am there. I tried to hold her hand and she is not able to give me that little squeeze that lets me know how much she loves me. It is very frightening to see her this way. Yesterday morning seems like forever ago. She was waving and grining to all of the doctors during rounds. She was playing with her Aunt Toni mimicking what she was doing with her toys. Today there are no Blues Clues videos playing in her crib and the baby in the mirror is not even there. My heart is sad, but I am holding on to the hope that He will bring her back. She is just resting while her lungs and her throat are healing. I know Ash is in there even though I can not see her.

I am trying to pray tonight but I don't seem to know what to say. I know He can see my heart and I know He can feel the burden I carry inside of it. Talking to my sisters tonight I am able to say that life is still good. There are so many things that I can be thankful for. Even though I am scared, I know that we are blessed and taken care of. If He is taking care of the sparrows tonight and I know that He is, then He is taking care of my Ashley. I never know what will happen from moment to moment around here, but He does. He can see tomorrow and He can see the very moment that our sweet Ashley will wake up with a fight and a zest for life. She will be ready when He says she is ready. I can feel Him working in her life tonight. I don't know why I feel this I just do. He is also working in mine. "Be still and know that I am God". This is what He says to do and tonight I am being very still. Her room is quiet and there is no movement, only the hum of the ventilator. I am trying to listen to what it is I am to learn from this one. How will this grow and change me? What will I be able to share when Ash comes out on the other side of this? I pray I am listening close enough to know what it is He is saying to us. Something inside of me tells me there is more going on than I know. I can't explain it. I just feel different tonight. Not really anxious, just something different.

Night time is when I feel the most lonely and vulnerable. Dave is not here to tell me good night or to talk about our hopes and dreams for the children's future. It is hard to be alone in the dark night after night when I am so used to holding his hand as I sleep. Just to know that he is on the other side of the bed gives me such peace in my heart. I am struggling without him. I am sad when I stop and realize that I have misssed an entire month of Blake and Allison's life. This is time that I can never recover. Once it is gone it will be gone forever. Allie is without a mom during this season of cheerleading and Blake doesn't have me there to make sure all of his equipment is ready each week for his games. I am having to learn to let go and allow others to fill in the gaps that I have left. This is one of the hardest things I have ever done. How do I make this up to them? I have no idea. They are being so grown up and so unselfish. My prayer is that God will allow us to be a family again once Ash is all better. If I could just take her home to our house and we could all be together to live this life that He gave us. It is a really great life and I miss it so very much.

But tonight I am grateful for this day and the time I have had to be her mommy. I am grateful to be used by Him to try and encourage my fellow parents in the halls as we all struggle together for our children. I am grateful for all that He does for my family, which is so much more than I deserve. I am just grateful to be me and to be in this place in my life with my baby. I am grateful that He has shown me love and support from my home, my church, my family, my friends, and my community. I am grateful to have a baby "gherkin" to love. I am grateful that He loves me enough to hold me and my family in His hand everyday.

Late in the day

It is now almost 6:00 and the day is almost gone. For Ashley she will have no memory of today, but I am so thankful that He has given me another one to spend with her. Ash has been under heavy medications for over 24 hours now. It is so scary to look into her eyes when they shine the flashlight into them. She is not there right now. She is sleeping so soundly that she has no idea what is going on around her. We have just experienced another "bagging" episode and she has recovered. Her sats have been dropping down into the 60 and70s. They would like for them to stay above 95. The alarms will sound and everyone comes running to work the bag and the vent to find the correct settings so that she will begin to breathe easier. This was the 4th time today they have had to use the bag on her.

One of the ports from Ashley's line (she has 3) is now leaking. At first they came in thinking they would re-wire the line and replace it, but after assessing the site they decided just to add some more stitches to hold it in place( Ash had torn them out days ago) and not take the risk of losing the line and ending up in the OR. I think that was the best decision to make at this time. We have just taped off the leaky port and are requesting that no one try to use it. Ashley is waiting to receive more blood today. Her hemoglobin is very low after yesterday's surgery and we are hoping this will help her blood gases to become more stable. I would like to really encourage all who are able to become a part of the blood drive that is scheduled in honor of Ash. The blood that Ashley receives has saved her life more times than I can count. It is such an important way to give to others who you will never meet. You will be able to walk away knowing you have now become a part of not only Ashley's story but someone else's as well. What a wonderful way to give to others who are in need. I will say thank you in advance to all who plan to attend and give the gift of life in honor of Ashley. I am so grateful for your willingness.

I have had another one of those long, middle of the night naps that I am becoming famous for. I am so grateful to have my family taking turns sitting with Ash so I can rest. I think I am more mentally exhausted than physically so when I am able to sleep it is not pretty. I am really learning to snore during this experience. It is not very lady like. I can assure you of that! When I do sleep I always wake in a panic trying to get back to Ash as soon as I can. My heart is always racing when I come into her room after such a nap. I really hope to begin to relax a little as she becomes stable again.

Today has been an exciting day for my Blake and Allison. Last night at practice coach surprised the Tarheels with their new Texas State Champion jackets. How I wish I could have been there to see the smile on Blake's face. I could hear him grinning on the phone when he told me all about it. I know he must have been so proud to wear it this morning. The boys worked so hard to earn those jackets and we as parents are all so very proud of their accomplishments. Allison should be receiving her new cheerleading uniform for this season today and I can not wait to talk to her it tonight. I am expecting Dad to remember to take the camera this weekend to her competition and send me some pictures of what I am missing.

Thanks guys for loving us and thanks for praying us through another day.

Ashley's Surgeries

Someone had asked how many surgeries Ashley has had so I made a list.

1. Necrotising Enterocolitis - removal of 40 cm of small intestine
2. Reanastomis - re-connecting the small bowel to the large bowel
3. Strabismus- eye surgery
4. G-tube Endoscpically - (feeding tube into stomach) this was the easy way to do it, but it didn't work
5. G-tube Surgically - it worked this time but created a bigger boo boo
6. G-J tube - this tube goes past the stomach and into the intestine (it was only in 1 day before Ashley pulled it out)
7. Transplant - liver, small intestine and pancreas
8. Repair perforation in transplanted small intestine
9. Wash Out- this was going back in to find something but nothing was found to fix so they just washed out the abdominal cavity
10. G-J tube - this was yesterday and did not work, however did find a problem with her pyloris which is the opening where the stomach empties into the small bowel _______________________
    Known Upcoming Surgeries
11. Abominal surgery to correct problem with pyloris discovered in surgery # 10
12. Take Down - this is when her small intestine will be hooked back up and all of her plumbing will be in tact such that she can poop normally. This would be the final transplant related surgery barring any further complications.
13. Eye surgery

Morning Rounds

The morning rounds are over and I'm not sure that there is a definite plan. From what I understand they plan on doing an upper GI tomorrow to determine the path that is in place from Ash's mouth down through her stomach and into the new intestine. The opening at the base of the stomach where it emptys into the intestine seems to be the part that needs to be reconstructed. Ashley is having a lot of problems with her lungs. The progression on x-ray over the last couple of weeks is not good. One of the doctors suspects that she has aspirated into them more than once. I can see that she is struggling and they do not think they will attempt to take her off of the ventilator for a while. They may not wait for her to recover from yesterday before taking her into surgery for some "reconstruction".

Today I feel confident that we are just experiencing a bump in Ashley's road of recovery. She looked so good and so strong yesterday morning and I am planning on getting back to that point. Ashley is still being paralyzed and sedated. It looks scary, but I am so thankful that she is not aware of all they are doing to her. They are taking blood and doing heel sticks every couple of hours and those things hurt, but Ash is "snowed" and has no idea of all the needle pokes she is receiving. Last night her blood sugar was as high as 400 and they told me they believed it was because of the stress of such a difficult surgery. They are running an insulin drip and it is now under 200. Things happen so quickly, but I have seen that things can turn around quickly too. One of the most frightening things for us to watch is when they begin to bag Ash. I know that this is not good. I just hang on and pray my way through it and thank Him that someone knows what they are doing. We have wonderful nurses working with Ash. Last night and today they have been very good and I appreciate the care they give to my Ashley.

Ashley is so very strong and so very stubborn. She will not let this bump get her. It may have slowed us down a little, but this road is long and we will stay on it until we are home again with Dave, Blake, and Allie. Today Ash will sleep through all that takes place in her little life. I pray she is having the sweetest of dreams while she is gone from me. I am praying that He brings her back to us soon. Thank you for loving Ash and for spending time in prayer for her. You are all so very much appreciated.. God Bless. Trish

Still Blessed

I have been agonizing over my last posting for hours now. I ask your forgiveness if it seemed as though I was losing my faith. I can assure you that I know Who controls and Who gives each and every breath to my Ashley. At times it is hard to put into words the things I know in my heart when my head is running away with thoughts that I try so much to keep under control. Today has been a scary day for me, but I can now think a little clearer and see that we are still so very blessed.

I am blessed to have been given another day with Ashley. I am blessed that she woke up from a good night's rest with a grin on her beautiful face. I am blessed that God did not give her a spirit of fear, but that He has given her the will to live. I am blessed that all those who take care of her see the fight that is inside of her and they too want her to survive. I am blessed to have held her close to my heart this morning before I gave her to them. I am blessed to have heard so many comment on how beautiful she was today and how good she looked to them. I am blessed to have held her hand right before she went into surgery. I am blessed to be allowed to sit next to her bed tonight and pray for another breath and another and another. I am blessed to have the confidence of the doctors so that they can tell me the truth as they see it. I am blessed that I am can place kisses on her head while she sleeps tonight. I am blessed that all of the pictures taken during the procedure show the most beautiful organs. I am blessed that she is not in rejection of the gift she was given. I am more than blessed that she is here and that I am her mom. I am blessed that she has a Daddy, a big brother, and a big sister who are praying for her. I am just blessed, even in the midst of a chaotic day I know that I am blessed.

Ash is now completely sedated and paralyzed so that she does not move and bother the breathing tube. I find myself dosing off and startling awake as they come into give her more and more drugs to keep her asleep. They plan on keeping her on the vent for at least 3 or 4 days to make sure she is stable. They are sending cultures to the lab to check for any possible infection that may have invaded her lungs during today's procedure. The biggest risk to Ash at this moment is her respiratory issues. How hard it is to see her struggle when she has always had such strong lungs. Please pray that pnuemonia will not set into her lungs over the next few days. We are holding on and waiting on Him to reveal more of His plan. I know that there is one. Good night.

It can't be real

As I sit to type to each of you right now there must be 20 or more people crowded around my sweet girl trying to stabilize her breathing. Today seems so unreal to me. So many times I have looked around and asked my sister, "is this real?, it this really happening?" It seems like such a bad dream but I haven't been able to wake up from it. I know He knew what today held for my Ashley. I know He saw every minute of it coming, but I could not have imagined that after a month of struggling she would end up so close to the beginning tonight.

My heart is broken and it is crying tears that my eyes will no longer allow to fall. It is killing me to watch her struggle for breath again. This was supposed to be an easy day. Just a small procedure down in surgery. Nothing at all for me to worry about. As the hour turned into 2, then 3, then 4 I knew they were all wrong. Ashley has had a scope and a breathing tube down her throat for more than 4 hours today. As a result of this trauma her airway is swollen and it is now to dangerous to allow her to come off of the ventilator. She is restrained and they are working on getting her paralyzed for the night to try and keep her from removing the breathing tube on her own. If she loses this tube tonight then the likely alternative will be to place a trach? I have no idea how to spell that word and I pray that I never have to learn. My tough exterior is cracked tonight and I am broken beyond words. I don't know what to say. I don't know what to pray tonight. All I say over and over again is God Please! I am so numb the tears will not come. The words are not here. My heart is pounding and my hands are shaking, my head is splitting and I am scared for her. I want the peace that He has given to me time and time again. I want to trust that He is still in control and I do, but I am just so frightened.

They were not able to accomplish the goal of todays procedure. Ashley does not have a G-J tube in place to feed her. They did find a problem with stomach and it will require an operation at some point next week to repair it. This problem is why she has been vomitting for 12 days. I can see that He has answered our prayer and showed her doctors what He has known all along. I am thankful for that. I do praise Him for showing them the problem and for giving them the wisdom to know how to correct it. Is this the reason for all of today's events? I believe that He gave Ash such a good nights rest so she would be strong enough to endure today. I know that He knows every inch of Ashley's body and how it is functioning and I choose to believe that He allowed this to happen today to fix a problem that only He knew was there. I will thank HIM for this.
Tonight I pray for peace and rest for my Ashley Kate. I pray for strength for my body and my faith to go on. I pray for His will to be done in Ashley's life. I pray for wisdom to be given to those managing her care. I pray I will not doubt or allow fear to overwhelm me. I pray for my daughter to grow stronger and stronger so that she will breath easily on her own once again. I pray that my words and my action will not show doubt in His plan, but that I will only bring glory to Him through all of this. I pray I will not fail my sweet baby, but that I will be strong enough to fight as hard as she does. Tonight I will pray and I will pray and I will pray and I pray that I never stop or become to tired to look to Him and continue praying for my Ashley.

Rough Going

Today has been a pretty rough day for the little Gherkin. She had a scheduled surgery today at 2:00 to place a feeding tube in that would bypass the stomach and go directly into the intestine. It is called a G-J tube. They couldn't find the right size for her so they were going to make a makeshift one out of a couple of other parts. When it was time to do it they decided to go ahead and use a larger one the is the right thing, just a bit larger. This seems like a better idea to me than the first of piecing one together. Because of the delays in finding the right part the surgery did not actually start until 2:37. The surgery was anticipated to take about 1 hour. Trish was beginning to get worried as we have not heard any report an near 5:00pm which was double the time we had expected to get some type of report. Finally a nurse came out to talk with Trish and told her that she had just realized that we had been waiting for some type of report. The nurse relayed that it was taking quite a bit longer than expected because Ashley's "anatomy is quite a mess in there and it is really slowing things down." I know Trish has been worried and I would appreciate your prayers for her tonight. Ashley is going to be very sore as they put her back on a ventilator and they have been running tubes and scopes down her throat during this surgery. Please pray for Ash tonight as what should have been a relatively easy surgery seems to have been a much bigger ordeal for her than originally planned. It is about 6:00 now and I still have not heard if Ash is out of surgery yet. I do hope so. Thank you all for taking the time to be a part of our story. We appreciate all that each one of you are doing to help our Gherkin. Hopefully we will all get a post .........Hold on Trish just called.........

Trish just told me that it has been over 3 hours in surgery and things are not going well. The anesthesiologist just told Trish that Ash's airway has constricted around the vent tube and thus she will not be able to come off of the vent today. She said that they still have not been able to accomplish to placement of the G-J tube and she does not know how much longer they will continue to try. I am praying that they will get it in there and that we did not put Ash through all of this trauma for nothing. If they give up then we have done nothing to move her forward, just taken steps back. Please be with us in prayer now that they can accomplish the placement of the G-J tube. Please pray for Trish as she is having a very difficult time with today's turn of events. Please pray for Ash that we can find a solution to the feeding issue as it is becoming more and more important that we get her off of the TPN. The TPN is what killed her liver to begin with. She did not have any problems with her liver, it just died as a result of all the TPN she received and we certainly don't want that to happen to her new liver. Please be with us in prayer and thank you for being there for Ashley and our family. Please pray for comfort for our little Gherkin tonight after such a hard day.

A Restful Night!

I am more than grateful to report to you all that our sweet Ashley was able to rest for a full 8 hours last night! I still can't wipe the smile off my face. Ashley has not slept all month since we have had the transplant, but God gave her the best nights sleep so far to prepare for today's events. I feel so happy that she is well rested. I am confident that this will help her to heal after today's procedure. She looks so good this morning. It is amazing what a little sleep will do for you. I am so thankful.

The procedure for Ash is to take place sometime around 1:00 or 2:00 this afternoon. Ashley will be completely sedated and will wake up in the recovery room. After she becomes stable they will bring her back to the ICU and she should be able to rest through the afternoon. She has had this done once before and when I saw her for the first time after she was crying "MY MAMA" over and over again. I have not heard these words for a full month now. My hope and prayer is that this new tube will allow Ashley to eat and grow with her new bowel. I am praying for this to work and for Ash to allow it to stay inside of her without pulling it out. They are trying to find the flat button top to place instead of the long tube that she pulled out last time. I am sitting here listening to them on the phone as they look for it. Medical supply says that they don't have them, but our staff up here says they know they do. Father please help them find the right one that You know will work best for her. Please protect her during all that will happen today and allow Your will to be done.

I would like to ask you all to pray for our friend Chloe as they look today to try and figure out why she is not doing well. My heart breaks for her and her parents. Today will be full of tests on her tiny body. Please remember to lift them up today. I would appreciate any time you could spen in prayer for her. I love this little one and I am asking God to touch her tiny body and restore her health. They believe her body is in some kind of rejection and they are countering it with some incredibly powerful drugs. She just feels yucky and they are not sure why.

Thank you all for loving Ashley today. You mean so very much to us as we walk through Ashley's Story with you. We will post this afternoon to let everyone know how she is after surgery. I appreciate all of your time in prayer for our baby and her tiny friends. May God bless.

Sleeping Beauty

OK...so sleeping beauty I may not be, but after sleeping in horizontal in a bed last night I feel like I slept for 100 years. Oh how I love my bed!!

How Beautiful

How beautiful to watch our sweet Ashley sleep so peacefully tonight. I am more than thankful for the rest God is granting to her after so many sleepless nights. She has been sleeping so peacefully now for more than 3 hours. I know this is a gift from God and I am so grateful. I am studying her tiny face as she breathes in and out. Even though she is growing her features are still so small and so beautiful. Ash has the most beautiful eyelashes that curl up on the ends. She has the tiniest nose and sweetest little mouth. I love everything about her face. I love everything about her. I love every moment that I am allowed to spend with her. I love being her mommy. I love this life that He has given to us. Our family is complete now with Ashley in it.

Even though the road has been hard and long it is so worth walking. He has given us so many beautiful moments that have come out of the hardest times. He is so faithful in leading us along. I am so confident that He brought us here to Omaha. How grateful I am that He is guiding us and that I feel I can trust Him. The staff at the hospital here is amazing. I know that God has used the surgeons in this place to give Ash her second chance. I trust the ones He has placed in charge of Ashley's care and that is such a good feeling to have. Ashley's transplant surgeon just poked her head in our room to check on Ash. I so appreciate who she is. I know she cares about Ashley and I am so thankful she takes the time to look in on her. She is in surgery tonight and I have so much respect for her and for the job she is called to do. Please be in prayer for the 2 little ones who will be receiving their transplants tonight. I have no idea who they are, but I do know what their families are going through at this very moment.

I am going to go and watch my baby sleep now. It is such a beautiful thing to see. I could sit and watch her all night, but at some point I hope to fall to sleep myself. I just don't want to waste one moment of my time with her. I am praying for Jeremiah's family tonight and for our donor family. I pray that God is granting those mommies a restful night. How my heart aches for the loss they are feeling. I wish I could ease the hurt they must feel. Father please surround them with Your love and with Your presence tonight. Allow them to rest in You and to feel a peace knowing You are holding tightly to their precious babies. Thank you for loving them just as much as You love me and my Ashley.

One smile is all I need..

After such and exhausting day full of struggle my sweet Ashley just gave me the one thing I needed to keep on going. All it takes is to see a smile on her face and all of the trouble and worry seems to disappear. It has to be the most beautiful thing I have ever seen. I wish I had a way to share it with each one of you who have been hanging on waiting for that smile just as I have. Nothing else seems to matter when you look into her face and see her grin. It is all going to be o.k. She will be strong enough to make it through tomorrow.

Tonight it has been 4 weeks since Ashley received her gift of life. Tonight it has been 4 weeks that I have been able to hold my sweet baby and wait for a smile to come across her sweet face. Tonight it has been 4 weeks since my faith was renewed by the gift my daughter received. Tonight it has been 4 weeks since I began looking into her eyes to see not one gift from the Father but now two. Tonight it has been 4 weeks that I have not only held Ashley close to my heart but also the tiny life who gave her so much. Tonight it has been 4 weeks since my heart fell in love with a family out there who looked passed their own despair to reach out to ease mine. Tonight it has been 4 weeks since I have learned the true meaning of sacrifice. Tonight it has been 4 weeks since I have been so humbled by the act of kindness given to my Ashley by a stranger who she may never meet. Tonight it has been 4 weeks since I began praying for our daughter's donor family. I hope they can feel His strength and His presence in the midst of their grief. As I prepare to search for the words to write to our donor family I pray He will guide me.

We are looking forward to a night to rest after such a long day. We have one of our very favorite nurses with us tonight and that tells me it is going to be a good night. She is a gift from the Father to us and I am so thankful we have her. I am praying for Ashley to get some rest tonight. She is so very sleepy. Tomorrow will be a long day for her as she faces yet another surgery. If she comes to mind tomorrow we would cherish each moment you could spend in prayer for her. Your prayers are so valued by all of us and I know she is stronger because of each one who prays for her. We love you all for loving us and for loving Ashley. Good night.

I'm Home

I am glad to be home and sad to be away from my girls. I had a parent teacher conferance with Allie's teacher just after landing this morning. I was so happy to hear of Allie's progress and how she is such a special part of her class. I was thankful to hear about her good grade and diligent work ethic. We are so proud of her and how she is adapting to all of the chaos in her life. We are so thankful to CHS for the stability they are giving our children during these trials in their young lives. I have already managed to find lots of work and unfinished business to keep me busy back home. I talked with Blake on the phone a bit ago and look forward to just hanging out with him tonight. He says he missed me and wants to spend time with me. This made me feel so good because as he gets older it is more difficult to talk with him on the phone. Us guys are really not cut out for telephone conversation. I can't wait to get home and start hanging out with him. Allie was great traveling today. I was hesitant to take her on this trip as I thought I would have less time with Trish and Ash because I would have to entertain Allie the whole time, but Trish and I were so very blessed by Allie and what a great job she did. She was not selfish at all she was just great the whole time we were gone. On the trip up there I got to see the most beautiful sunset from above the clouds and on the trip home I got to see an equally beautiful sunrise from above. It is such a blessing and a reminder of how God continues to provide for us each and every day. Thank you all for your prayers for our Gherkin. Please lift Trish up in prayer as she is the one doing all the hard work. Ummmm... Maybe pray for me a bit to as I am still trying to figure out how to be "Mr. Mom" ....that just sounds so wrong..

May God bless each one of you today,

DAVE

The Plan

The doctors just finished the morning rounds and everyone is stumped as to why Ash is not feeling any better. She just seems so miserable and no one knows why. It has been a very hard morning to be here because she is just crying and crying between minutes of sleep. It is breaking her Aunt Toni's heart. It is not easy to spend time here in this unit. If the children are in ICU it is because they are very sick and this is difficult to be around day after day. I told her it will get easier as she learns to adjust to the crying and the chaos that surround us right now. My prayer is that Ash will make it back onto the 6th floor sooner rather than later. The plan for today is to just watch Ashley. They are busy taking x-rays right now to look into her lungs for any signs of trouble that may be causing her difficulty breathing. Tomorrow we will go into surgery around 1:00 to do scopes, biopsys, and place a G-J tube so that we can begin feeding Ashley's new intestine. Her liver enzymes have taken a hit today due to the increase in her TPN. She lost weight again last night and this is not the best of news. Tomorrow will be a tough one because Ash will go back on a ventilator and she will wake up from surgery very sore and very uncomfortable. I believe she will be given some Tylenol to try and help her cope with her new set of boo-boos. I am so very thankful that I will not be alone during tomorrow's procedures. One of the toughest things we have to endure is allowing them to take Ashley from our arms and walk away with our daughter as we stay behind totally helpless. I am so glad that my sister will be with me to keep me calm and focused. God has a plan in all of this and I am sure He knows why we are experience a few set backs instead of making progress. I will trust Him today with Ashley and I will trust Him tomorrow with her. I will continue to wake up every day and trust that He is doing what is right on her behalf.

I have talked to Dave and he and Allie have arrived safely home this morning. Praise God for taking care of them while they were in the air. I look forward to speaking with Allie and Blake today after school to hear all about their days events.

Thank you again for coming to visit Ash's Story today. I appreciate all of your kind words that you leave for us in her guestbook. I appreciate all of the prayers you say for her. I appreciate each one of you for loving my sweet Ashley. I appreciate the support you give to my family. May God bless you all today and everyday. Trish

Flying Away...

It is now 5:00a.m and David and Allison have left for the airport. My Allison is so grumpy in the mornings that we dreaded having to wake her up so early today. Actually she only fussed a couple of times before getting on her jacket and grabbing her little suitcase to roll behind her. I thought we were all holding it together pretty good until we got to the elevators for them to get on. I gave her a hug and she held on so tight I never wanted to let go! That was all it took to break my heart and the tears began to fall. I kissed her on top of her ponytail and asked her to be brave for a little while longer. She came back 3 or 4 times for just one more hug as she tried to fight off her tears. How painful to see her finally go. Saying good-bye to Dave was really difficult. It is so very hard to see your best friend walk away not knowing when you will see them again. Our good-bye was short and sweet. A kiss on my forehead to say that he loves me and a wink as he walked away to let me know it was really going to be o.k. As I sit here typing this note the tears are still falling and my heart is still broken. I wonder how painful it must have been for the Father and the angels in Heaven to say good-bye to Jesus as He prepared to leave them? I know I am not alone with my broken heart.

Our Ashley has had a really bad night. Dave stayed with her and said she never quite fell asleep. She has cried most of the night and nothing he did could console her. Her tiny heart must be broken too. I think she knew something would be different today when she woke up so she must have decided to just not go to sleep. When I came to sit with her she was still crying and she reached up for her cups that her daddy hung above her crib. She hit them around for a minute or two just to make me smile and then she was done. She was just letting me know that she too knew he was gone. I have no idea when they will be back, but I hope it is soon. We are not tough girls like we pretend to be. We are just a mommy and an Ashley who count the days until Dave, Blake, and Allie can be with us.

Today I will ask the Father for many things. I am so thankful He loves me enough to not grow tired of talking to me. I will ask Him to protect my family as we are all scattered this morning. I will ask Him to help my sweet Ashley as she continues to struggle with things that only He can see. I will ask Him to gaurd Blake's heart as he goes to school another day. I will ask Him to give me strength to be strong for Ashley as she hurts today. I will ask Him to watch over our patient's health and their families. I will ask Him to take care of my parents in all they do today. I will ask him to use me to bless someone somewhere today. I will ask Him to comfort my new friends who I will probably never see again as they prepare to say good-bye to their baby. I will ask Him to give wisdom to those who are managing my Ashley's recovery. I will ask Him for an extra measure of strength and grace for our donor family today. After I ask Him for all of this and probably more I will tell Him that I love Him and I will thank Him for loving me and for loving my Ashley.
I am going to pickup Ash now and tell her over and over again how very much she is loved by not only me and her family, but by people from all over and by the One who created her. I hope she will finally fall to sleep and know that it is o.k. to rest because we are all praying for her. Take care today. We love you all.