I used to think that parenting was the hardest job in the world. I no longer think that. I KNOW that! All it took was placing 700 miles between this mom and her kids to convince me of it. I will be the first to sing their praises and announce to the world that I have GREAT kids, but they are still JUST kids. Kids make mistakes. Kids have to be taught. Kids have to be corrected when they do something wrong. Kids need discipline and accountability. Kids require a lot of routine, consistency, and modeling. Now try to meet those requirements while living this far away from them.

My morning started with a tearful phone call from my Allison. It then proceeded to a conversation with Blake that went back to Allie and then back to Blake once again. All of this before I even made it out of bed. I will spare you the gruesome details of the event, but if you look closely at the above photograph you might get the idea of how they behaved toward each other this morning. My heart sank as I listened to each side and realized that they had wasted what could have been a wonderful, enjoyable day out of school(they had parent teacher conferences today allowing then a holiday from their classes). How in the world was I to intervene, be just, serve the appropriate discipline, and set the example of consistency that I knew they needed to see all the way from Omaha? I counseled with them both, talked about their roles (that were defined by God) in our family, and let them know that I would be speaking to their father before he came home for lunch. Whatever punishment we decided to serve they both agreed would be deserved. So I left them to sweat it out until Dave made it home.

After talking with Dave we agreed that an essay would be a good place to start. Neither of us were actually there to witness the injustice they served each other so figuring out how to discipline something we didn't see and didn't have the clear facts about had to be creative. What better way to spend their afternoon than sitting across the table from each other writing about the other one and what they appreciate about them. Our requirements? It couldn't be things like: "I like your hair." We wanted it to go a little deeper than that and we wanted them to really think about their relationship with each other. It also had to be two pages in length and had to be single spaced with their NORMAL sized penmanship. (After 12 years of parenting you start to figure them out a little bit and we knew that last requirement would have to be clearly spoken in order to avoid a kindergarten style paper).

Ashley Kate and I went on with our day. I shed a few tears today over the separation of our family and I prayed for the children. Ash and I played and worked on her strength and advanced her feedings to 20cc and hour. We rocked and sang songs. I laughed at her silly attitude and I thanked God for the special hours He was giving me to spend with our youngest daughter. Although it is tough to be apart from Blake and Allison I can see that this time with Ash is precious and we get closer and closer each day.

Tonight I received another phone call from home. No tears were shed by Allie or Blake. They were shed by me. As I listened to their essays about each other my heart soared with pride. They get it. They were able to diffuse the ugliness between them and truly seek to find the qualities in the other one that made them such a special part of our family. I laughed at some of the content. I cried at some of it. I laughed until I cried at parts of Allison's paper. That girl has inherited her daddy's humor! I wish I could share the papers with you , but I don't have them. I did ask Dave to save them for me because I plan on having them framed and presenting them as very special Christmas gifts from the other one on Christmas morning.

I wouldn't trade my job as their mom for anything in this world. I have GREAT kids, even if they do still act like children(thats their job you know). I am truly blessed!

So sorry I kept forgetting to post Ash's new room number. Here is the address:

I'm reading a book this week that was sent to me by a couple of ladies from home. I have never met them, but they know Dave and they sent a package with him to Omaha last week. I finished it today and the words inside of this book brought new meaning to me as our family continues this journey with our sweet Ashley. The name of the book is When I Lay My Isaac Down. I knew instantly that I would love this book. What a beautiful title! It is about unshakable faith in unthinkable circumstances and I will no doubt read it over and over again.

As I read page after page I would say to myself, "I needed to hear that." As the author made comparison to Abraham's faith in his God I would say to myself, "I need to have that."

One chapter in particular is called "Stretcher Bearers". While I read this chapter I was reminded by the author of a story in Luke that I remember learning as a child in Sunday school. I even remember coloring a picture and gluing the man onto his stretcher to take home with me. I hadn't thought about this story in many, many years, but as I read through this book it took on new meaning to me. Jesus was speaking one day and he was surrounded by a multitude of people. The crowd was so great that you couldn't even get through the door of the house to see him. A man who was crippled by a palsy was carried on a stretcher to the place where Jesus was. The part that touched my heart like never before was this, he was carried. By whom? Who would pick up this man who could not walk and make sure that he made it all the way to the One whom he believed could heal him? Not only did those "bearers" of his stretcher take him to the house where Jesus was, but they went to extraordinary means to make sure he got to see Jesus. The Bible tells us that when they could not enter the house because of the crowd they took the man onto the roof and moved the tiles so that they could lower him into the midst where Jesus was. When Jesus saw their faith he told the man, "Thy sins are forgiven thee." The man was healed. How beautiful! To have friends like that! To have a group of those surrounding you who would pick you up and carry you to Him when your could not reach Him on your own. They were literally his stretcher bearers. They bore the weight of his burden and carried it to Jesus for him.

Before Ashley Kate's birth I would have never seen this part of the beauty of this story. I saw that Jesus healed this man. I saw that his faith made him whole, but I missed the part about his friends. Those who got him to Jesus. I think this part of the story is beautiful! Oh, to be that type of friend. I may have never felt the importance of the role that these "bearers" played in this man's life. Now I can say that through her life, her struggle, her battles, and her triumphs I know exactly what those stretcher bearers must have meant to this man. I have been picked up and carried to Him. My burden which seems so heavy some days as though it might crush me is carried to Jesus by those of you who chose to come along side of me and carry my "stretcher". When you are given the opportunity to see those around you become the physical hands and feet of Jesus you will be forever changed. I pray that I will not forget what He has taught me though each one of you. I pray that I will someday in someway be able to do the same for others. What a blessing this book has been to me the last couple of days.

The ways that you have carried our stretcher are so very numerous. I always fear that I will fail to mention my appreciation for some act of kindness toward us and that someone may wonder if it were received. Tonight I want to say that first and foremost your prayers have changed our lives. The burden that you pick up and carry for us on a daily basis is the kindest thing anyone has ever done for us. In addition to those prayers you allow yourselves to meet our needs or comfort our hearts in tangible ways as well. Without your support it would be impossible for us to survive this season of Ashley's story. How humbled I am each time I receive a note, a card, a letter, a story, a word of encouragement, or a gift from you. Please allow me to say thank you to and for :


the lovely trees of fall created by my sisters first and second grade classes. Ashley loves the trees and the many colored leaves. I love your notes of encouragement. Thank you boys and girls.

those who sent me this book. I was so encouraged and blessed.

the one who sent the "HUG" last week. It is beautiful and I love it.

the adorable hair items that were sent to us girls. I never found your name anywhere on the package, but I want you to know we loved them!

my sweet friend who stopped by tonight a gave me the opportunity to "snuggle up close" to my family as I drift off to sleep. I still cry each time I glance over at it. Thank you.

those who joined in prayer for us last night. Ashley was weaned off of her oxygen this afternoon and no one can explain why or how? (That always makes me smile.) Your prayers spoke to my heart.

each one who gladly accepts the difficult task of "bearing our stretcher" on those days when I am too crippled to take myself to the place I need to be. I know what a tough job that is.


Tonight I just want to say Thank you again. Thank you for loving us. For praying for us. For carrying us. For "bearing our stretcher" in the many ways that you do. I do thank God for you and for your presence in our lives and in her story. Good night my friends. Trish

We got up yesterday morning and decided that today would be the day. Out of bed, too little oxygen or not, throwing up or not, we would get up and face the day as if we were at home. Out came the play mat, all our toys, books, and the dreaded gait trainer. It was Ashley's first time in it in 7 weeks and I knew it probably wouldn't be too pretty. At first her little legs shook because they had become so weak, but it didn't take long for her to put her determination in motion and go get what she wanted. I realize it was only one push away, but this push spoke VOLUMES to this mom's heart. She remembered what it was going to take to get to where she wanted to go. This was her first successful attempt. I thought it would make great video, but the throwing up at the end of her drink didn't look that good once I viewed it. So I decided to just share the pictures. I knew you would appreciate me for that (especially those who are reading on their lunch break!). She did this 3 whole times yesterday! I remain encouraged.




Pushing closer.





Close enough she decides.





Reaching...reaching...reaching...






Yes! She did it all by herself with no help. I am so proud of you Ashley Kate. Your baby steps will get bigger and bigger someday. I love you!






So refreshed. She kept drinking and drinking and drinking until... well, I promised not to show you what she did next. The point is she earned that refreshing reward all by herself and I couldn't be prouder!

Thank you so much for the time spent in prayer for us tonight. As I stood by Ashley Kate's crib lifting her up to the Father I could feel the presence of many inside my heart. You will never know the impact you have made in our family and in the life of our little girl.


This was my very first image of this years fall. My first day outside in almost 7 weeks. Oh, how beautiful to spend the day outside enjoying all that the Father created along with two of our three children. Friday after rounds Dave and I took Blake and Allie to the pumpkin patch here in Nebraska. If you have never been to the pumpkin patch in Nebraska then I dare say you have never "really" been to one. I know I hadn't. The weather? Lets just say that living in Texas the majority of our pumpkin patch pictures have been staged. Through the years I have been known to "force" our family into sweaters and jackets in nice fall colors just to capture that fall like feel in our photographs. All the while the sun was beating down on us in about 90degree temps causing most of us (including me) to be miserable by days end, but oh the pictures I have taken. This years pictures are AUTHENTIC! The children had to keep jackets on in order to enjoy the day. I had to borrow a pair of tennis shoes so that I didn't freeze my toes off in my flip flops. I think the temps were around the mid 50's and it made for a perfect day of running around the amusement park, I mean the pumpkin patch. It was as big as an amusement park with just as much to do and enjoy. What a great time we had together. How I wish our "Pumpkin Pie" ( a new nickname one of the x-ray techs gave our Ashley Kate which just made me giggle) had been with us. When we asked if we could bring back a pumpkin in order to take some pictures of her with it and to let her touch it we were quickly told "NO!". So much for trying to be polite and ask. Next time I will just do it and let them chastise me for it later. So after all our wishing and hoping Ash did not get to see her first pumpkin. They told me to bring her a plastic one. Like a plastic one from the shelves of walmart that has been touched by a thousand hands was going to be any safer? We decided we would just have to wait another year to let her see one of those big orange circles.

I'm afraid if I shared with you all that we did this day you would be reading all night. So instead of boring you I will attempt to hit the highlights. What is there to do at a pumpkin patch other than pick out a pumpkin?

Paint ball. Pig racing (you would just have to be there to understand). Pumpkinopolis 5000 cart races. Gemstone Mining( Allie is an avid rock collector and we really enjoyed mining for stones. Dave and I have decide to sneak one of the emerald stones out of her bag and have it set in a ring for her for Christmas this year. I can't wait!). The Cookie Coop(Blake's favorite event of the day. An entire cone of warm, fresh, from the oven, gooey, chocolate chip cookies to warm your tummy. He was in Heaven and couldn't stop smiling!). Pillow jumping. Apple launching. Pumpkin cannons. Pumpkin eating dragons. Mazes( we all choose a different entrance and raced to the end. Who do you think won? Of course it was Blake.) Cotton candy, Carmel apples, chili, corn dogs, smores, campfires and anything else you can think of to make the experience last a life time. We truly had a great time just being together. In the back of our minds and always in our hearts remained our baby gherkin and a longing to have her there with us. Things just aren't as precious when we are separated, but still we remained thankful for the time we were given to enjoy a fun filled day. I long for the days when she is back out of the hospital and living life with us once again.

I pray this is the last holiday season she misses out on. Thanksgiving and Christmas remain on my prayer list and I know the Father knows how desperately we all want to be back home together in Texas(even if the weather is so warm we have to fake those photographs!) Thank you guys for rejoicing in out time spent together. Thank you for your continued prayers. Thank you for caring. Goodnight and may God Bless you. Trish

There are days when I feel as though we are drowning. Every day seems to bring its own set of struggles for Ashley Kate. This morning she just needs air. Simple everyday, in and out, oxygen. Most of us never even think about taking a breath. It just happens for us naturally. Today Ash is having to work for each and every one. This can get so frustrating for her and for me. She is on oxygen, has had a breathing treatment, a chest x-ray, and we just sent a viral panel from her nasal washings. All of this before noon and before rounds. I feel as though we need to string together one or two good weeks with no issues and then we will be on our way home. The trouble in that plan is getting those one or two weeks. At this point we have the ability to string together one or two days but past that it just isn't happening.

Yesterday marked 7 weeks of vomiting for Ash. There is no clinical indication that we have been able to find anywhere that is causing the vomiting. Since she doesn't show a reason for it then no one is concerned about it. I was told other than the inconvenience of it there is no reason to worry about it. Ash doesn't inconvenience me in any way, and as long as everyone thinks she is safe then I will try and stop worrying about all of the retching, gagging, and vomiting.

Despite our respiratory issues, I think she is doing well. She is currently on the floor on her play mat surrounded by her books and a basket of toys. We have done some work on her tummy, and some standing work. She has become very, very weak the past month and half. Her little arms and legs shake and shake as we attempt to re-gain the skills she had acquired. Dave and I have done some reading and some research as we are looking into some program options for her. We truly believe Ash has the potential to reach her milestones and to live a somewhat normal life. We also believe that she has suffered some mild injuries to her brain and its development. Not only in utero, but also over the course of her surgeries and transplants in the past two years. We read something this weekend that brought new hope to our hearts and a re-newed drive to help her overcome. "Believe in your child and their potential. You have nothing to lose."

That is the key to her success. If we don't believe in her and put the drive to excel in her then no one is going to. We firmly believe God has a plan for Ashley Kate. There are days when it becomes difficult to see past the current circumstance, and then there are those days that He allows us to be encouraged by something new Ash learns or does. Ashley Kate is no longer in rejection, but we are facing a whole set of side effects and current struggles as a result of this episode. If we could just get to the place where she is back home, living life, working with Ms. Sue, and playing daily with Blake and Allie, then I think we will see drastic changes in our sweet girl once again. Your continued prayers for her recovery are so appreciated. I would like to say that we are days away from returning, but the likely hood of her surviving the RSV,cold, and flu season in the hospital are not very promising. We had hoped to be moving her into the cooperative setting away from the other patients and the traffic flow today, but her respiratory distress this morning has put a halt to that plan.

Over the course of our visit, I had the opportunity to talk one on one with Blake and Al about Ash and our family. Just touching base with them and their thoughts about this latest separation. Allie and I were loading Ash and her pumps, and tubes, and machines, and IV pole in the wagon to go outside for a few minutes and I light heartedly asked, "Is she even worth all this nonsense?" To which my Allison replied, "OF COURSE SHE IS, MOMMY! She's my sister." A couple of days later Blake and I were in the car alone and we began to talk about Ash. I asked him if he thought we were making the right decisions for her or if he would do anything differently? He wondered what could we have done differently. I shared with him that some people think we made the wrong decisions for our family and for Ashley. This is how he responded to me . "Mom, I think thats why God gave Ash to us. He knew we wouldn't quit on her and He knew we would do anything for her even if it was hard. If somebody else would have taken her then they may not have tried so hard and she deserves for us to keep trying. This is what we do and I would do it the same way you are." With tears running down my cheeks I told him with all the sincerity in my heart that I loved him and could not be prouder of who he is. He just shrugged his shoulders and said, "Thanks, Mom."

We are all coping, and doing it to the best of our ability. These days are hard on Ashley Kate. They are hard on her family, but we are all committed to each other. I love my kids. All 3 of them and we are more than blessed in this life. I miss them like crazy and I can't wait until Thanksgiving because that will probably be the next opportunity we will have to all be together. Thank you again for your prayers and your support. She is tougher than most would think and determined to get out of here. Have a great day. Trish

It goes so fast! When I was a kid it seemed like the days could drag on forever, but now that I am a mom the days begin and then end before I am ready for them. Dave and Al have just arrived at the airport and are waiting to board their plane. Blake and Grandma flew out early yesterday morning in order to make it in time for the Tarheels first game at 1:00 in Dallas. As I hugged that handsome ballplayer goodbye I think I might have held on a little tighter than I usually do. He is just so wonderful and I wasn't ready to say goodbye. Eventually I let him go and its a good thing that I did. Our Tarheels went 2 for 2 yesterday winning 11-1 and then 18-1 ranking them 4th to enter into todays tournament play. They won again this afternoon 5-4 in an exciting game and are now preparing to play in the Super Series State Tournament semi-final at 5:00. Dave and Al should be able to catch the last couple of innings. How I wish Ash and I could have jumped on that plane with them!


Our week slipped by so quickly. There was just too little time. We tried to pack in as much fun as possible during our 4 and 5 days together(shopping, pedicures, paint ball, pumpkin patches, games, movies, date nights, wrestling matches, wagon rides outside, sock wars and crafts). Ash had her best day Wednesday and we are so thankful for that time. She laughed(as you saw on our video) and played and loved on Blake and Allie all day. Then Thursday and Friday she just felt bad. Very few giggles, but lots and lots of foot rubs! It didn't take long to train her brother and sister. All she had to do was put up a little fuss and hold that foot in the air. Two seconds later I would see one or both of them with a tiny pickles foot in their hands as they visited with her and told her how very rotten she was.

Yesterday we awoke to great news. They had suspected she might have slipped back into rejection and we waited anxiously for our biopsy results. ALL CLEAR! She was the only scope that produced good news that day. We couldn't be more thankful! Her CT scan showed some loops of bowel that had some thickening of the walls(this is not good and we will have to monitor it closely), but it also showed a complete resolution of the nuemotosis. That meant that we got to start her feeds back today running at 10mls an hour. Literally 2 minutes before Dave walked out they came in and pulled out her chest tube. It was in for a full 2 weeks. She screamed and put up quite a fuss, but after a little morphine she has drifted off to sleep. So much has happened this week. Lots of anxious moments and days, but the good news is that she is on feeds again and this will be our ticket out of here!

So many good times and memories to share with you. I won't take the time to do it all right now. I do want to record our days for Ashley Kate's journal, but first I think I will lay down and relax for a little while first. As always our room is too quiet and our hearts feel so empty when Dave and the kids leave us. It takes a little while to adjust once they are gone. We want to thank you for the prayers you continued to pray for us while we slipped away from her journal. The time spent on our kids was so worth it! We know you were praying for us and we couldn't be more appreciative. Have a great afternoon and I will share more with you later. Take care my friends. Trish

Walking into the room to find our 12 year old son laying next to Ashley Kate on her pallet.

Hearing Allie say, "Whats wrong baby pickle?" I guess Ash will always be a baby gherkin to us.

Watching Dave climb his old body in to that crib next to our baby.

Seeing Blake dance along with Steve on Blue's Clues just for the entertainment of his baby sister.

Listening to Allie read stories to Ash while standing on a chair just so she can see her.

Taking Al to get a manicure and pedicure this morning. She is really growing up.

Seeing the protective glances on the faces of her amazing brother and sister each and every time someone comes in her room to do anything to her.

Taking Ashley Kate for a walk outside for the first time in 6 weeks.

Making up songs and games together trying to get Ash to smile.

Watching Ashley show off her new skill of holding up two fingers so everybody knows that she is still 2.

Being with my son to watch the first game of the 2007 World series! What a blessing.

Seeing my three kids all in the same room at the same time. It doesn't get any more precious!

Sitting next to my best friend in all of the world tonight at dinner and discussing our hopes for Ashley Kate's future.


Emotionally I think Ash is doing very well the past two days. She is so happy to be surrounded by her family. Medically I am not so sure. Her CT scan showed complete resolution of her numetosis and for that we are grateful. It also showed a larger collection of fluid around her heart. Another echo cardiogram was done this evening and we wait for direction. They have not allowed her to have any feedings in case action needs to be taken. Her stool output is very, very high and they are considering another scope and biopsy of her bowel to be done tomorrow to check for rejection. Her nausea and vomiting continues, but she no longer has fever. She looks uncomfortable today. Her face is swollen and puffy as is her tummy. This is not an easy ride. How we wish to pack her up and take her home with us. The majority of Ashley's symptoms are a direct result form the many medications she has been started on. Originally they were needed to stop the rejection, but one led to symptoms causing need for another and another and another. The fluid issues in her lungs and heart are very dangerous and they have been caused by one of her medications. What a trap we find ourselves in. Her chest tube remains and it has been in for almost 2 weeks now. In the beginning I was told it would be there for only a couple of days. Her kidneys have slowed done and are causing much concern for everyone. If we could only get back to where we were at home. Our goal is this: get her out of rejection and stay there. Get her home. Get her off all of these medications that are causing this trouble. We have a ways to go, but we are still confident we will get her there. Thank you so very much for your continued prayers for Ash. We really appreciate each one of you.

She sure is having a good time with her Daddy, Blake & Allie.

Its CRAZY how much I miss you guys when I have no access to Ashley's Journal. Dave walked in at 7:30 this morning and here I am. I knew I loved this guy! Thanks Babe!

I am so CRAZY blessed in this life. Each day I look around me and make it a point to acknowledge my blessings. Yesterday I didn't even have to try and look for them. They just kept falling all over me. I tell you it was CRAZY!

Our day started with the news that we would be moving out of the PICU. The next thing I new we were clamping Ashley's tube off and that meant we were making progress. Then around 6:30 we got to "move". Thats when the blessings started falling all over us. We walked into the biggest room we have ever had. What in the world did I do to deserve this? Nothing. Its just because He loves us. Next, I walked a little further into our room and guess what I found? A BED! A real life, honest to goodness, lay all the way down flat BED for ME. Did you read those last two words? FOR ME? I am so CRAZY blessed. The nurses who prepared the room for us are such blessings. They said, "We thought you might like to have your own bed so you don't have to sleep in the chair." I love these girls. They also made sure we had a "good" recliner to rock in, and what I call the "rolly" table(you know the hospital bedside tables on wheels) for my office. Then they said, "Were gonna step out of the room and allow you to move things around the way you like them." That made me giggle because they knew I would have to organize my different "rooms" for Ash and I to live in .

Then this morning a group of the most beautiful people I have ever seen in my life walked through the door. They looked amazing. Blake and Al are SO grown up. I missed 'em like crazy! What did I do to deserve to get to be there mom? I am so blessed. At this moment they are dancing around the room and entertaining Ashley Kate. She sits on her daddy' lap giggling, clapping and waving her arms for "more and more". She is so happy! and I am so happy to see them all together again. I am crazy blessed in this life.

As far as the progress goes, Ash is struggling with her feedings. I think they will probably be stopped today. She has been throwing up all morning. It doesn't seem to bother her. She just vomits and laughs and vomits some more. A little nausea isn't going to stop her from enjoying this visit. I'm a little disappointed, but it looks like she just isn't ready yet. We will have to see what the CT scan shows tomorrow. We are also waiting on the chest x-ray to show us how much fluid has re accumulated in the lung area. If it looks good we might be able to get rid of that chest tube. Ashley actually tried to pull it herself last night. It wasn't pretty. It took a team of 5 people holding her down, a dose of tylenol, benadryl, and morphine to secure it again. She fought and screamed like I have never seen. The blessing in this whole ordeal was that she showed us that she indeed can be mobile and get anywhere she would like to when she wants to. We could not keep her on the bed. She fought and crawled and scooted and moved so quickly we kept having to get more people to come in and help hold her still. This baby is going to get mobile someday. I just know it!

Well, I am going to go and enjoy this family I have been given. I just wanted to let you know why I was absent last night and that they have arrived safely. Grandma drove the entire trip and is now on her way to take a nap. Crazy, I know, but she insisted. Thanks grandma! She wanted Dave to be awake today so he could enjoy our visit. I tell you we are CRAZY blessed in this life. Thanks for loving us and praying for us and for being so excited about our time to visit with each other. You are appreciated. Trish

..of the PICU. We are getting to move up to the regular Pediatric floor today. YEAH!!!

I had prayed that we might be out of ICU when the kids got here. I had also prayed for her chest tube to be removed so that they might hold her. Were not getting the tube removed, but we are getting to clamp it off and see if she can do it. Thats progress, and thats a blessing to be counted. I am so excited to be getting to go back up where the rooms are larger, quieter, and more private. This is such good news for us and it came just in time for our visit. So I am packing for our move. For some reason Cheerios just taste better up there. I am so excited!

Overall Ash is handling her feeds well from what I can tell. She continues to hold on to a low grade fever and seems nauseated when she is moved or picked up, but I think all of that is to be expected. We have a CT scheduled on Thursday to see what she is doing with those feeds. Hopefully her bowel will look beautiful and show that the numetosis is all resolved. She fussed and fussed at me for most of the morning until I figured out that she had been reaching for her sippy cup. That baby was thirsty and wanted a drink, so like any compassionate mommy would I filled that cup with water and let her drink away. Who needs to ask anyway? She is now sitting happily in her crib with her cup and life is getting better for her. Just wait until tomorrow when her daddy and Blake and Allison come walking in!

I'm not trying to get greedy or anything, but I have been secretly hoping to have our "freedom" re-established this week so that we might be able to take her outside and let her carve a pumpkin or something with Blake and Al. This move upstairs makes that a lot more of a possibility. Please, please let this happen for her. I just know she will feel so much better once she goes outside and feels the cool air, sees the sunlight, sticks her hands inside a pumpkin for the first time, and gets to play. Its funny how important the little things in our life have become since Ashley Kate's birth.

Just wanted to let you all share in our good news today. I hope you are having a great day and I will visit with you later. Trish

I honestly don't know how he does it. This man must feel as though the weight of the world is on top of him, but yet he never lets me know if he is struggling. I crumble and fall apart all over him several times a day, and he never fails to encourage me and bring me back together. He can make me smile even on the toughest of days. He brings laughter into our home, our family, our relationship and thats what makes our life so great. Without his strength and his solid perspective I could not do this another day. I love him. I admire him. I respect him. I am thankful I get to know him, and even more thankful I am allowed to love him.

Once again he has put the pieces of my fragile heart back together and has encouraged me to keep on. His strength, and peace, and comfort comes from God. With all that he is managing in my absence you would think I would be the one to lift his spirits, but it is the other way around. All I do is Ashley Kate. He does everything else. Our home, our practice, our family, our life continues to run like clockwork because he is amazing and he works from early in the morning until late at night making sure things go right. After working a full day at the office, giving a lecture, settling the children and tucking them into bed, he is up packing for the trip. Tomorrow morning he will attend Allison's field trip with her and her fourth grade class, work a full afternoon at the office, and then jump in the car for a 14 hour drive. He will do it all with a happy heart and a willing spirit. Why? Because he loves us. He loves me. He loves our family. He loves our baby gherkin(and can't wait to hold her!). He loves God.

Thanks Dave for having the energy to encourage me tonight and for having so much excitement in your voice about coming to visit. I love you for keeping me centered and for allowing me to fall apart all over you. I can't wait for Wednesday morning!

Ash is still on her feedings. She doesn't feel well today and I am trying to imagine what it would feel like to use your tummy and your bowel for the first time in 35 days. I think I might feel a little yucky too. She has spiked a low temperature tonight and her heart rate is a little higher than I would like. She has been nauseated and thrown up several time today, but I think that is to be expected. Overall she is holding her own. When I pick her up she snuggles in under my chin and pats my arm with her tiny fingers reassuring me that its going to be alright. She has not slept much today and even though she looks exhausted I don't think she is going down tonight either. Her chest tube continues to put out way too much fluid. She is losing about 100cc every 6 hours. She has to get down to 30cc in 24 hours before they will pull it. Her side is sore and bruised and she screams any time you touch it. I have learned to pick her up in very interesting ways this week in an attempt to make her more comfortable.

Thank you for your prayers today. Things remain a little strained and tense. I honestly believe everyone is working toward what they believe to be in Ashley's best interest. We just have different ideas and different ways of getting there. Your prayers are so appreciated. Our ultimate goal is to take Ashley home and to give her the best quality of life we can. This is what our hearts desire. Getting to that place is not always easy. Anyway, thanks again for loving us and for loving Ash. Goodnight guys. Trish

If we could ask you to pray without publishing the details, then that is what I would like to do. There is much tension and stress in our room today and I would greatly appreciate your prayers. I rest assure knowing that God knows what is going on and that He is working His plan, but it is a difficult day for me and I am facing difficult decisions.

Ash is currently doing OK on her new feeds. Not great, but not too bad. The best I can report is that they are going ok. She is very clingy and cuddly today and it doesn't really bother me. It just gives me more opportunity to rock her and be close to her.

Knowing that Dave is going to be here in a couple of days brings me much comfort and support. As always we are better together rather than being apart. There is strength in numbers and if you would please lift up our silent request and help us seek direction then I know that all work accordingly. Thanks so much. Trish

It's been 5 weeks today since our sweet Ashley had gotten sick. We took her into the hospital for what we thought would be an overnight observation while she received some fluids. Little did we know that our tiny pickle would not come out, but would actually be sent back to Omaha. The early weeks were filled with heart break and disappointment, fear of major surgeries and the diagnosis of rejection. What a roller coaster of emotion.

Today our little one returned. Full force. She has smiled, played, giggled, sparkled, and brought such joy and encouragement to our hearts. I saw Ash in her eyes for the first time in over a month. She was silly and ornery. Refusing my kisses and shaking her head "no, no" each time I asked her if she loved me. She would lean her forehead into mine as I would say, "I love ya, love ya, love ya!" To which she would smile that amazing smile and cut those twinkly eyes. I truly do love this child. What joy she brings! My heart is encouraged. Although she struggled this past month, she held on to her spirit and today was the day for it to shine.

So what is our exciting news of the day? Ashley Kate is having dinner tonight! That's right, we have just hung her first feeds in exactly 5 weeks today. Our sweet baby has not been fed in 35 days. Her bowel has suffered much injury in the past 5 weeks. It has come out of rejection and is still healing from a severe case of numetosis, but tonight is our trial run. We have started with a "thimble full" of neocate to test it out. Although I am SO excited to be at this place, it could possibly be a dangerous place for her. We have no idea what her bowel will do with the food we are trickling into it. Will it absorb? Is there motility enough to move it through? Is the numetosis infection healed enough not to react to the feeds and flare back up? We just don't know. What we hope is that she does not become sick, does not become distended, does not vomit, and does not spike a fever. We need for her bowel to do its job and do it well. This is our first step toward making our way back home to Texas. I was so surprised to find out we would be taking it tonight. If her bowel does not react the right way then we are at great risk of developing another case of NEC. NEC is the original condition that led us all the way into transplant life. If her bowel allows the formula to sit stagnant inside without absorption or motility then bacteria will set in and could possibly cause the tissue of the bowel to necrose or die. That would be disastrous. We have decided to keep her antibiotic coverage going just in case this occurs in hopes of protecting her against bacterial infection. Excited and anxious. Thats is exactly where I find myself tonight.


Without a doubt this has been our best day yet in Omaha. I am praying that she will continue to do better and better. I hope she stays like this and that she will be ready to play and play and play when Dave and the kids arrive this week. I couldn't help but feel blessed over and over and over again today as I enjoyed the return of our Ashley's personality. This transplant life is so very hard, but on days like today you become so very thankful for the gift that was given. God has been so good and so faithful to us. Thank you for checking on Ash tonight. I hope your smiling as big as I am knowing we have taken our first step toward home. Your prayers are going to get us there. I just know it! Take care my friends and good night. Trish

P.S.

The Tarheels won the tournament tonight. The second game was 13-3 and the third was 10-1. Yeah Tarheels! We are so proud of you guys. To top it all off, the Red Sox are on their way to the World Series against the Rockies. Now who are we supposed to root for? I can feel a division in our family rising up.

She's just learning to take it all in stride. Ashley Kate is no longer stressed out about being here. She has stopped grinding her teeth and she no longer screams every time someone approaches her bed. This is what she is up to today. She's just kicking back while mom does her laundry. Looks like she's on vacation!

I am so very proud of this baby. She is growing up! She has learned the drill. Every 4 hours they come in and she puts her leg in the air and allows them to put the blood pressure cuff on without throwing a fit. When she sees the thermometer she no longer fights to keep her hand behind her head. She throws that arm down to her side and allows her temperature to be taken. She doesn't do it with a happy heart, but she does do it without a fight. The look on her face says a thousand unpleasant things, but I won't try and interpret them. I'm sure it wouldn't be polite reading. The point is that she is maturing and learning each and every day even in this environment.

I think she looks great today. It was a rough night, but she woke up in a great mood and has been sitting up in her bed for over 2 hours now. She is looking at her books, playing with a couple of toys, and watching you know who. We will not be taking the drain out of her chest today. She put out 120ccs in 12 hours last night. Where in the world is all of it coming from? We have removed close to 1000ccs of fluid of her left lung. The blessing in all of this is that she can breathe easily with it in. How grateful I am that she is able to breathe without any support. I know the tube is uncomfortable for her, but without it we would be in a lot of trouble. So today I am trying to be thankful for the hole we have cut into her side because it is allowing the extra fluid to drain out rather than having it put her in danger. Its all about perspective in this place!

On the home front, Allison's soccer team entered today's play ranked in the first position. They lost their first game which knocked them down to play for the 3rd or 4th place overall. After an exciting game(which I listened to by phone) they won 2-1. The girls were thrilled to win a medal and we are so proud of Al! The Tarheels won their second game last night 5-4 and began today's place ranked in the number 2 position. Their first game of today was 13-3 by the Tarheels and now they get to play at 4:00. Go Tarheels!

I have exciting news to share with you later on tonight (if it actually happens). I don't want to say anything just in case it doesn't, but if it does I just know`you will be smiling as big and wide as we will be.

Have a great day and may God Bless. Trish

P.S.

Michelle J- the mezuzza arrived for Ash yesterday and it is precious. Thank you for your thoughtfulness.

Emily- We received your letter and Alivia's stickers. I can't express how very touched I was that you thought to share them with Ash. Your Livi was beautiful, and I am so thankful the Father allowed you to be her mommy. You are being prayed for.

By the world's definition a life of service may not seem so glamorous. Too often I think we are told that we "deserve" to be served rather than to serve others. I disagree. Strongly. How honored I am to be placed in the role of servicing those who I love. We as moms are so very blessed. Thats not to say that it is always an easy thing to do, but today I tried to concentrate on the rewards of my service to my family.

As I rocked my sweet Ashley I was richly rewarded. How amazing to feel her tiny heartbeat against my chest. She had relaxed and curled into me and I stopped and just enjoyed each beat of her heart. The smell of her freshly shampooed hair was delicious and the way her baby soft skin felt overwhelmed me. To be honest, yesterday was hard. I tried so hard to soothe the aches of this tiny baby for so many hours that when I woke this morning the muscles in my legs and hips burned. They still hurt as I sit here tonight. Talk about service. I joked with my friends last night that I must have had a spring installed when I wasn't looking, but the reward is so very sweet and satisfying. I am blessed to have this opportunity.

When I consider all the times I get to serve my beautiful Allison Brooke the service pales in comparison to the reward. Our friendship blesses my heart. To feel her little hand reach out to hold on to mine as we walk. I love that she wants to just "touch" me. She lays awake each night waiting for our time together. Sitting on her bed, listening to her prayers, kissing her forehead as she drifts off to sleep. Priceless are the rewards I am given in return for my service as her mommy. I will gladly make hundreds of grilled cheese sandwiches, brush thousands of strands of her hair, and wipe the many tears that fall onto her cheeks(because she is nine and nine year old girls are VERY emotional!) during these years.

My son. Serving this child is a joy. From the moment he was born and I became a mom I have been so blessed. Washing the many uniforms, packing his equipment, rubbing those smelly feet. All in return for the most beautiful words I have ever heard, "I love you more than chocolate chip cookies mom!" What a reward! Feeling his arms wrapped around me as he passes by and stops to give me hug. Crowding behind me on the couch to watch a baseball game together. Answering the phone while I am 700 miles away to hear, "How are you mom, this is Blake. I'm just wondering how you and Ashley Kate are today?"

A life of service? Is it daunting? Is it demeaning? Absolutely Not! It is a blessed role I have been chosen to play in this life. A life of service is an honor not a burden. These are just a few of the rewards I receive for my service as their mom. I couldn't imagine a better life. Ask me this question: Would you rather be served or would you rather serve others? I would gladly say, "Sign me up for a life of service. Nothing could be more satisfying."

Rounds are now complete and if you haven't noticed by now things tend to move slow around here on the weekends.

Here is the news. We still have our chest tube. Ash needs to have less than 30cc out in a 24hour period. The last 24 hours she had 80cc out. So the good and the bad of this situation? The good is that her doctors are very cautious and are not removing it too early causing them to have to turn around and put it back in. I am thankful for that. The bad? She hurts and is uncomfortable because of it. We are also stuck in the PICU until it is removed just in case it were to pull loose and allow air to rush into the space.

The resolution of Ashley's bowel is also moving slow. Until it resolves we are not going to begin any feeds. It shows that it is happening so that is encouraging, it is just happening slowly. Hopefully by the end of the week we will be able to "test" her bowel with a little amount of feeds. We won't know how it functions until we can feed it.

The surgeon on service this weekend is not supportive of us going home before she achieves full feedings. If they all feel that way then Ash and I could be here a very long time. I think I am switching my prayers to include achieving that full feed status sooner rather than later. This will be our key to getting home.

Allison's soccer tournament is going well. They won their first game 7-0. They won their second game 5-0. They will play the third game tonight at 5:00. The Tarheels will begin their first game of the weekend at 4:45 this afternoon. Blake is traveling with friends of ours and Dave will join them tomorrow evening if the guys are still in it.

Ash is very tired today. She had a restless night and actually slept in until 2:00. She is already trying to go back down for another nap. I am hoping to keep her awake by reading some books together in the rocking chair as we listen to "Anne". I don't want her days and nights to switch around on us.

So once again we proceed slowly. In some ways I feel as though we have been thrown back into those post transplant days. In other ways I can see how much bigger and stronger Ash is this year and it keeps me encouraged and looking for that quick turn around that will lead us home. Only 4 more days until Dave and the kids arrive, and we can't wait!

Thanks for remembering us in your prayers. I hope you all have a great weekend. Ash and I are going to snuggle up in the chair and start our Anne of Green Gables marathon. Take care my friends. Trish

Tonight I am thankful for the brief moments of play, rest, and friendship the Lord gave to us today. It has been a tough, tough day for Ashley Kate. She has been so uncomfortable for most of the day and night. Nothing I have done helps to ease her discomfort. I really think that once the chest tube is removed she will feel much, much better. Hopefully that will take place tomorrow. Even now she struggles to rest.

As I said earlier I am concentrating on the good things that happened for us today. We did play for a brief moment or two(not lasting for more than ten minutes or so). We did rest for a brief time this afternoon. The only sleep she has had since 5 this morning. She has wrestled with her drain all day long not allowing herself to sleep. We did have visits from friends today. That was such a blessing. In those brief moments we laugh and try to forget the heaviness of the day. What gifts of friendship the Lord has given to us here in Omaha.

We are both so tired from today. I was constantly trying to make Ash more comfortable. We would rock for brief moments, walk for brief moments, sit for brief moments, and then lay down for brief moments. I describe them as brief because none of them lasted. She just aches and I am left helpless.

We spoke with Dave and the kids briefly tonight. Blake was going to bed because he has a baseball tournament tomorrow in Lufkin and Allie has a soccer tournament tomorrow in Longview. Dave was already asleep when I called as well. He is so tired from all the running he does with the kids after work. Tonight they made dad's famous pumpkin seeds and I know they enjoyed that. They absolutely love this time of year because of all the special treats that come along with the season. Last night Nan made them frito chili pies after ball practice and they enjoyed that as well. I can't wait for Ash and I to return home so we can be a part of all that is going on.

Speaking of brief moments, we are still praying that our time here will be be brief. It has been four weeks now and I know we will be here a minimum of two more. We still keep count of the weeks until Christmas hoping in our hearts to be back home in time to celebrate. We have held on to that same hope for the past two years and did not make it, but perhaps this will be the year that we do.

It sounds as though Ashley Kate has drifted off to sleep and I think I should try to as well knowing that our time for it will more than likely be brief. In the midst of all the discomfort today we were blessed by sweet moments that will last in our memories forever. A few grins, some cuddle time in the chair, laughter with good friends, and another day together. Overall I would have to say that God has been good to us on this day. Good night my friends. Trish

I have no time to waste. Not a single moment. He has given me, entrusted to me, one of His most valuable creations. When I stand before Him I want to know that I refused to "hide" my "talent" for fear of losing her. I want to know that I did everything to make her life full, rich, and well lived. I want there to be NO regrets.

Jesus told of a parable in the book of Matthew. There was a master who was going away. He called unto him 3 servants and handed them each some of his talents to manage in His absence. The first he handed 5, the second 2, and the third 1. When he returned the first servant showed the master that he had taken the 5 talents and doubled them for him. The second servant did the same. The third servant returned unto the master the 1 talent he had been given to manage and said he had buried the talent out of fear of losing it. To the first two servants the master answered, "Well done. I will make the ruler over many things." To the third servant the master said that he was wicked and lazy and he took the talent from him and gave it to the servant who had ten. Jesus goes on to say many other things about this parable in Matt. 25, but what spoke to me the most was the fear in the third servants heart. I do not want to be that servant. I want to know that I made the most, the absolute best that I could, of Ashley Kate's life.


Dave and I have made it no secret that we don't expect our sweet Ashley's life span to be the same as our Blake and Allison's. We have acknowledged that our time with her may be short. With that knowledge we feel the urging of the Holy Spirit to enjoy each moment, each day, each experience with her so that some day we can stand knowing that we loved her, we shared her, and we dedicated her unto Him. Because of this urging we also don't expect to attain perfect heatlh in her body before returning home with her. Our goals are more realistic than that. We want to achieve a safe place. Once we are there then we will work on TPN, feedings, replacements and the like. All of this can be done in our home, with our family, living life to the fullest extent possible. No regrets. Afternoons at the park, picnics by the pond, trips to the ocean, bike rides around the block, baseball games, Christmas with her cousins, and all the rest. This is our current prayer for our Ashley, a safe place.

This morning we are encouraged and a little disappointed. Encouraged becasue CT shows more resolution of the damage done to her bowel. Discouraged because it is not healed enough to begin feeding it. Encouraged because we may still leave the PICU today. Discouraged because the drain tube must stay in her chest another day possibly two. Encouraged because she is here with us for another day. A little discouraged because our time here is to be lengthened by another week of waiting before beginning her feeds.

We are doing our best to return unto Him that which He entrusted to us with full knowledge of knowing we did what He led us to do. It is with this prompting that we seek to live and to give our children the best life possible. That is especially true of our littlest one. Oh, to hear Him say, "Well done" when it is all over.

This is not all there is. She is oh so much more. More than hospital beds. More than monitors. More than leads and wires. More than meds. More than scans, and tests, and procedures. The Father has so much more in store.

Some days it becomes difficult as her mommy because while we are here she is "just Ashley". She is known as the patient, but they don't see the little girl. She is known by her chart, but not by her heart. I want so badly to announce to everyone that she is more than what they see in front of them. What they know is our Ashley on her bad days, but if they only knew our Ashley on the good days. If they could see her laugh the way she laughs when she plays with her daddy on the floor. If they could see the twinkle in her eyes each afternoon when we open the car door for Blake and Allie after school. If they could see the wonder on her face as she sits with her Nan on the front porch to watch the birds take a bath. If they could feel her tiny arms wrapped around their necks with all the love she can muster then I know they would get it. She is so much more than the patient. She has a life. A home. A church. A community. A family.

Ashley has spent some of her life confined to a hospital room, but I wish everyone could see her on the days when she is not. She lives. She plays. She loves to be outside. If you could see the look on her face as she watches a butterfly fluttering in the garden. Or if you could see how intently she watches Blake throw a ball. How about the way she claps her hands when Allie "rescues " her from her crib. Nothing is sweeter than to see her sleeping on her daddy's chest while he naps at lunch time. Oh, how amazing it is to feel her relax into my chest as we rock.

I know in my heart the Father has so much more planned for her life. I know she will do more things. She will see stand on the mountains and behold the beauty He created . She will play in the waves as the ocean breaks against the beach. There are many sunsets she has yet to see. Raindrops she has yet to feel on her face. Leaves she will run through. She will learn and grow and experience more and more and more. I believe this.

This is only a time in her life. It does not define her. She is so much more than what they know. She is our daughter and she is so very special. Its easy for some to think we have "put " her through all of this. Perhaps they have missed seeing the twinkle in her eye, the fight in her spirit, the smile on that beautiful face. Perhaps they can't acknowledge the value in His creation. Perhaps they have closed their hearts to watching the hand of the God who created her work in her life. I don't know how they fail to see the miracle of who she is? It astounds me that someone would choose not to see that there is so much more going on here. My heart breaks because they have chosen to miss out on that so much more. What would the Father have done in their hearts had they only opened them up to this little girl?

I want each and every one of you to know that you are loved. We could not be more touched by the love and prayers and support that we feel from you. The Father has used you in the life of our family over and over again. On the hard days, you are there to encourage. On the good days, you are there to share. On the "normal" days, you are there to rejoice with us that we have achieved them. I am forever changed by this body of believers who have allowed themselves to love our Ashley. Thank you so very much. Trish

...You just have to live a little. Enjoy!

Forgiveness is easier to get than permission around here. Hope you understand.

Our day began around 4a.m. Ash woke fussy and uncomfortable and has remained that way. Up until that time I feel like she rested fairly well. She tolerated her vitals being taken throughout her IVIG infusion and even slept through some of them. At 5:30 x-ray came rolling in and I thought, "Well at least were already awake this morning." Then it was time for labs to be drawn, and the day took off from there. Hospital life is tough on little ones. Their sleep is interrupted constantly and they never quite get into a routine. I managed to stretch her tubing far enough to reach the rocking chair, but it didn't help. Her chest is sore from the drain and she is no longer tolerating it. She picks and pulls at the dressing trying to get to it. The doctors would like to give her a one time dose of morphine to help her get through this period today and hopefully get her some rest.

We are not removing the drain today. We all had hoped for it to stop draining by now, but it hasn't. It is slowing and that is good news, but not enough to remove it. She will have to keep it for at least one more day if not two. We will be turning it off of suction and onto water seal today to see if that helps it to stop draining some. She can't wait for it to be gone.

We are taking her down to CT today to look at the bowel. We are hoping to see that the nuemetosis(?) has resolved enough to begin some feeds. Unfortunately she continues vomiting and until it stops as well we are stuck on TPN. As long as she is on this course we will have to stay here. Things will eventually turn around I just have no idea how long it will take to get her going again. The removal of the drain tube will be huge when that can occur.

My plan today is to keep the room as quiet as possible and to try and soothe her enough to get her to sleep. The lights are down, the music is playing, our "candle"(thank you so much "cheerful giver") is glowing. If she sleeps then I will begin a new book by Max. Low key is the plan outside of our trip to CT.

I just wanted to take a moment to say:

Sandra, thanks so much for all you have done. The quarters have made my life so much easier. You have been a blessing.

Krista, please tell the girls thank you from Ash. We loved their gift!

Brent and Darlene, what a great idea for her crib. The lights are glowing as I type and I thank you so much for the package. The socks are adorable!

Jule, the mask is perfect! I am sleeping so much better, and the laundry burden is so much lighter. Thank you my friend.

Glenda, Thank you. You put a huge smile on both of our faces.

Dee, I can't thank you enough for the meals. It has been wonderful to have something home made for a change.

For the many card and letters I say thank you. What a joy it is to receive mail from you and to hear how God is using Ashley Kate in you lives. Thank you for caring and for praying.

Amy, I would love to receive the CD you have put together. What a blessing.

Many have asked what Ashley is allowed to have and not allowed to have. The only thing I know that we can not receive are plants, flowers, or latex balloons. Thank you for your interest in making her days bright. You are all so loved.

Have a wonderful day and please know that you are appreciated for making a difference in the life of our family. The days aren't so lonely knowing you are all out there praying for us and thinking of our sweet girl. Take care my friends. Trish

The quality and the sound of this clip isn't that great, but the vision of Ash actually playing is the best. I was so thankful to look over and see that she had picked up Blue and was shaking her and loving her and playing with her. That's progress! If you look close enough you will see a grin on that face. It doesn't last long, but it is there. Little by little she begins to get her strength back. I really believe that it won't be long until we are allowed to start feeding this little one and then watch out cause we'll be ready to go home. I can't wait!

So the little camera thing is going to take some work. I am clue less! I was really, really trying. I did manage to get it to work for a few moments. Long enough for me to see those amazing people I get to call my kids. They are truly fabulous. I love them not only because they are my kids, but because they are incredible people. If you don't know them then I think it is easy to criticize us and our decisions, but if you do know our Blake and Allison then I don't need to go any further. God has really prepared their hearts and without the work He has done in them all these years they would be struggling. His plan for our family is precious and I am so grateful to be a part of it.

Dave and the kids are coming to visit. I am so excited I can hardly stand it. They will be traveling all night Tuesday and arriving in the early morning hours of Wednesday. They get to stay until Friday around noon, and then they will fly home. I am really looking forward to seeing them, hugging them, and loving on them. I can't wait to sit up late into the night catching up on all that is going on with each of them. Ash and I miss them so much.

So tonight Ashley Kate is snuggled in next to her Blue. I am so glad she has something to love through all of this. She just lights up when she sees that puppy. She sleeps for now, but her IVIG did not show up today and they still want her to have it. So she will be getting her vitals taken every 15minutes for the next 3 hours and she is not going to like it. I hope it doesn't come for a few more hours so she can at least get a little rest. As I type I am listening to those sweet sounds she makes while she is sleeping. Its almost sounds like she has something to say. I could listen to her breathe and squeak all night long. What an amazing God we serve. Our baby breathes effortlessly tonight and I know it is by His hand. Thank you for praying for us today. We love you guys. Good night. Trish

... you don't succeed, then try, try again.

I continued working with Ash all day. Trying and trying to get her to feel like getting up. We had a bath, shampooed, dressed, fixed her hair and this is all she felt like doing.




After much persuasion and relentless prompting she finally gave up and did this...




... for about an hour. Now she has returned to her original position, but still I was encouraged by the way she looked once she was up. She really wants that drain tube out of her side. It is causing her to be uncomfortable and I am having to wrestle her and keep her hands occupied.

She is still draining fluid. Still throwing up. Still feeling kind of yucky, but I think she is beautiful. We are looking forward to visiting with the kids before bed tonight and allowing them to see our baby gherkin. Hopefully she will enjoy the experience.

So sorry if you have been worried. Sometimes the connection around here is difficult to hang on to. I attempt to post and it disappears because my connection has been lost in the writing of it. Thank you for your patience.

I wake up each day and just keep trying. Trying to hang on to some kind of routine. Trying to help Ash feel better. Trying to stay positive. Trying to be connected to the things at home. Trying to keep up with the laundry. Trying to pull myself together. Trying to be a better me.

Then there are days like today when all of the "trying" just become a little "trying". Trying to throw myself together with a ten minute shower, no electricity any where near the mirror, and a half done make up job because I have lost the last shade of the tan I showed up with. When you feel yucky, your day is... yucky. Today I definitely feel yucky. My hair is too long. My roots are in desperate need of some color. I am still walking around with 6 nails on and 4 nails off. My feet are aching for a pedicure and there is just no pulling myself together when I feel like this. How I wish I were one of those always "put together" wives or moms. The truth is that in the best of circumstances it takes a lot of work, and I still don't achieve that "put together" look. A hospital room is not conducive to working magic on this run down, over weight, thirty something mommy. I am afraid I am not very good at being a "stay at home/hospital mom". I wasn't blessed with the face, hair, or body that can pull this thing off flawlessly(although some others do).

The good news is that Dave is 700 miles away and he doesn't have to know how bad I look. Oh, yeah the camera came yesterday. That 700 mile away thing isn't going to work for me any more. We hooked it up last night and it scared me. There I was looking at the face of this incredible man that I get to call my husband and there he was looking back at me. Tired, wrinkled, gray, and not so attractive anymore. What now? Now is when real life kicks in and those marriage vows are being put to the test. He has to look deep inside my heart to find the inner beauty that resides there and try to love that enough to look past the "shell' that I have allowed to crack and fall apart. Heaven help him cause he is going to need it!

Ashley Kate on the other hand looks great. She doesn't feel great, but her color is amazing. Her cheeks are rosy and her skin always glows with that natural tan she was born with. She too is trying to pull her self together, but that chest tube is making it a little difficult. She doesn't feel good enough to sit up today and she half heartily tried to hold a toy or two, but gave up. They are keeping her on the dry side and that makes her feel yucky and miserable, but her chest tube is still putting out too much fluid. Another 180ccs have found their way out of that left lung. We will not be moving out of the PICU until the tube is removed. The tube will not be removed until the amount of fluid exiting her chest becomes a normal, reasonable amount. For now she lays in the bed getting lazier by the day because she just can't get herself pulled together either. I rub her feet and exercise her little legs while she lays still. I sing songs and make her hands and arms do the motions with me trying to give her some sort of movement, but she doesn't really appreciate me for that. I keep trying with her anyway.

Its just one of those "trying" days for us here in Omaha. Longing to be home, to be outside, to be anywhere but here. I guess its on days like today that trying to find the part of His plan that needs to be fulfilled in my life gets a little "trying".

I used to wonder "why me"? Out of all the mommies in the world why me? He could have picked anyone, but for some reason He picked me. I think I'm learning a little more each day why He chose me.

I believe He chose me because I could not have looked upon the face of this tiny miracle and walked away. Nothing in this world could have made me. I loved her. I wanted her. I prayed for her. I would never say to Him, "Oh no, Lord. Not this child. I couldn't love this one." He had been preparing my heart for her. For our Ashley. Many, many years before she was even born.

I used to think that anyone would have loved her. I used to believe that if she were offered to any mom out there that they would do what I have done. I don't believe that anymore. It breaks my heart to know that there are a few people who look at my daughter and see no value. Nothing worth loving. Nothing worth fighting for. Nothing worth giving life to. Oh my goodness you would have missed out had He offered her to you and you chose to walk away. Oh my goodness the world would have missed out if it did not have her in it.

Ashley Kate is worth every moment of every struggle. Her life is valuable and He alone gave it to her. He alone preserves it. He alone will choose when to take it. Nothing I have done, will do, or hope to do will extend it for one more moment, one more breath, one more heart beat.


Why me? Because He loved me. Why me? Because I am blessed. Why me? Because He heard my cry. Why me? Because He wanted to give me the desires of my heart. Why me? Because He has a plan for me and for my family and for my sweet Ashley Kate. Why me? Because my heart was and is willing to love on a miracle.



Dave and I know that we were called to be her parents from the moment she was "knit together". Broken or not. Perfect or not. Valued by the world or not. She was born to be our daughter. She was born to complete our family. She was born to bring glory to God.

I am so thankful the Father thought of me. So thankful the Father created her. So thankful He sees her differently than the world sees her. She is priceless! So valuable to the heart of her Creator and to the hearts of our family. It s my privilege to share her story with each one of you. Thank you for seeing the value in our baby's life. Thank you for loving her. Thank you for loving Him.

... this is a crazy way to live! We are on day 30 of this current hospital stay and I would like to say that I think it is going to be ok. I know it seems as though we are on this unpredictable path that takes us on extreme highs and lows, but I really think we are going to be ok.

Ash looks better today. We have successfully removed around 520ccs of fluid off of her left lung. When you divide that out you may be as shocked as I was to learn that it equals a little more than 17 fluid ounces. Yikes! thats more than a diet coke sitting on my baby's left lung. No wonder she is struggling to breathe. Her chest x-ray looks better today and we hope to be able to remove her drain by tomorrow. I also hope to be moving back up to the floor tomorrow. They make no promises around here, but as long as her lung is no longer compromised we should be safe to live up stairs. She continues needing oxygen support, but I hope that doesn't last for too much longer. We have a CT scheduled for Thursday to check on the bowel. By the weekend we would like to have a plan of action concerning feedings.

I know we are having ups and downs. I know our emotions are all over the place. Some days I struggle to breathe along with Ash, and on others I feel like the turn around is coming. All I can say is that its tough to watch her go through all she does, but the joy that accompanies the good days is so complete. I know God gave her this spirit of joy and it spills out onto all of us. To know Ash on the good days and to watch her learn and accomplish more and more is indescribable. It feels just as huge as the hurt we experience for her on the bad. All of life is a give and take. He did not promise us this life would be easy. He was honest with us and told us we would have struggles and hurts and disappointments. What He did promise is that we would not have to endure them by ourselves. I have learned just how close He can feel when I need Him and just how far He can seem when I don't look for Him.

I wouldn't trade places with anyone. She is an amazing little person and I love her more than I can express. What a gift I was given the day He picked me to be her mom. Its going to be a good day. I can just feel it.

Some things you just don't ever get used to. I don't think I will ever get used to the empty space next to me in my bed when I lay down at night. Trish and I are best friends and we end every day by sharing what each of us did that day. It just doesn't seem right for Trish and Ash to not be here. I miss my girls and I know that they miss us. I now end my day by calling and catching us with Trish on her and Ashley's day, but it just isn't the same on the phone 700 miles apart. Today we spent some time trying to figure out the how and when we will be able to make the trip to Omaha. It is quite a challenge to work out the schedule. So far the best idea we have it to go during the week, but that poses its own set of problems. We will get if figured out and hopefully pretty soon. Trish tells me that Ashley had a little bit better day today, and those types of reports always make it a little bit easier for me. It is difficult to be here so far away and not be there to comfort my baby gherkin. So I am so grateful for the good reports.

We received a box of goodies at the house today from "a cheerful giver" and it was such a blessing to the kids and I to open the box. It was a great surprise and another page in Ashley's Story that I am glad I got to learn from. It is amazing how such a small token of kindness from a complete stranger can teach me and my kids such important life lessons. I would like to say Thank You to "a cheerful giver." I pray you will be blessed as much as you blessed us.

I am looking forward to getting the webcams set up so we can "be there" with Trish and Ashley and the can "be here" with us. I am looking forward to our nighttime routine being somewhat what it should be. I know that Trish is also looking forward to "tucking" the kids to bed even if it is done through a webcam. She should be getting it soon and we are all excited.

I was out of town working this weekend so I was not able to see the journal entries. I was so very touched this morning when I was catching up and I saw over 100 comments on one of the posts. I know there are so many of you out there praying for Ashley and the rest of our family. So much so that sometimes I can actually feel your prayers. Thank you so much for being there for our Gherkin and our family. You prayers mean more to us than anything money could ever buy. We are blessed by each one of you. Thank You!!

Goodnight,

DAVE

Ash is now back in her tent staring at her hands in the oddest way. I wonder what she is thinking? She could possibly be trying to figure out how to get them around my neck in order to strangle me for putting her through this. Just a thought? She looks really good and she did really well. We have a wonderful surgeon and I appreciate her care and concern for not only my Ashley Kate but for our whole family. She never fails to ask when Dave will be returning or how the older kids are.

As she was setting up for the procedure we were visiting and I made this statement, "I really think the Lord must be trying to help me work on my trust and fear issues." She just smiled and nodded. She knows I have trust issues when it comes to Ash, and she also knows one of my biggest fears is the bedside procedure of sliding drains and needles in to tap out fluid. I keep hoping it will get easier, but it never does. When it was over I said, "Its a good thing her mom is so brave!" To which we all laughed because everyone knows what a wimp I am when it comes to Ash. Ashley Kate is the tough one who continues to pull me along. I really do admire this little person.

Her chest x-ray is already showing some improvement concerning the fluid, but it also shows that there is a pocket of air between the lung and the plural cavity. We are hooking her up to suction in hopes that it will help. The air outside the lung is compressing on the lung making it harder for her lung to inflate. This can lead to problems with her heart function. We did another echo on the heart and the amount of fluid around it is unchanged. If things go the way we all would like then once the lung has drained the fluid around her heart will be able to find some place else to go too. Its a tense situation and it seems as though nothing with Ash is ever easy. We still have no idea why this happens to Ash. I asked if they had any theories and they said they could make something up to tell me, but it would only be made up. So to be honest it is best to say that we don't know why her body does these things. Our job is to help support her through them and by going after the fluid (even though it is frightening) we have the best chance at helping her.

I still have not unpacked my things. I'm holding out hope for those drastic changes that will allow us to move back out of the PICU. Once we are over this respiratory issue then I want to go back to working on that bowel and getting it fed so we can move home. These are my goals.

Thank you again for your prayers. Your support is so comforting. Just knowing that I can ask for your help in praying for Ashley Kate encourages my heart. Wendy, thank you for the gift. It is beautiful and one day I hope to be removing it from my neck and placing it around Ashley Kate's. Karen and Robin thank you for the yummy surprises, and Aunt Kathy, Ashley is forever grateful for finding her "friend". You are all loved and appreciated. Take care and God Bless.

Ashley's surgeon just came in and said they would like to attempt another tap and drain. Please pray for our little pickle. She is so exhausted and has been sleeping for most of today. She has no idea what they have in store for her.

The ultrasound and x ray show us that Ash's lung is completely full of of fluid again, and she is moving no air through it at all.

I will never understand the whys of all that goes on in Ash's life. I could ask a million questions,but it wouldn't do any good. The best way I know how to cope during the tough times is just to trust. I can do no more. My hands are shaking and my heart is pounding because I know how fragile she is . Just like with most things that are fragile, she is just as valuable. Our family would not be the same without her in it.

Thank you for praying. Trish

We're a little dirty. A little sore. A little grumpy. A little tired. A little homesick. When I sat Ashley Kate up in her tent this morning I thought I heard her say, "Who signed us up to go camping?''

She isn't thrilled about the whole camping thing. Princess' don't camp. She wears hair bows, and outfits, and lacy socks. She doesn't lay naked under a tent with no hair brush. She just looks really ticked off to me. I have to smile about it otherwise we would start to cry.

I know the tent looks ugly and doesn't look like much fun, but it is a huge blessing. Ash HATES to have anything taped to her face. She won't wear a cannula or mask. Our only option to help her breathe during this ugly fluid episode is a tent or a ventilator. Guess who signed her up for this camping excursion? You guessed it. It was me.

She and I had a long talk this morning. She knows how much I love her, and she knows that I agree this stuff isn't fair. She also knows that if this is the road that leads us home then we are going to take it. I would rather not be battling respiratory issues again, but this is where we are for today and no matter how much I cry or stomp or complain it won't change. We might as well look at the positives and so far the biggest one is that she is still not on the vent. I'll take that any day.

The team has no rounded yet this morning. We do not know which direction we are going to take. I do know that at some point they will be removing the drain that is stitched into her chest and whether or not they place another one is yet to be revealed. I will let everyone know as soon as I can. Sweet Ashley Kate has just removed all 3 of her monitor leads and is now holding them up for me to see through the walls of her tent. Shes still Ash even if she is only working on one lung. I just love her! Uh, Oh the nurse is coming. I should go help her get out of trouble. Thank you for your prayers and encouragements. You are loved. Trish

All of today's trouble was just a warm up of what tomorrow may bring. I can't believe what I am going to share with you now. In just two short hours Ashley's chest tube was pulled out. How? We have no idea. They ordered an x- ray to see how much fluid remained and by 9:30 the film showed that the drain tube was no longer inserted into her lung. I can't describe to you how frustrated and defeated I felt at that moment.



The resident came down and told me he wanted to remove the dressing in order to get a good look at the site. I refused. No thank you. She has been through enough tonight. There was no way I was about to let him remove that dressing, pull out those stitches and the tube. Not tonight. She is in no danger from it remaining under the skin and I would like for her to be left alone.




So now my sweet Ashley lays sleeping under her oxygen tent. Sleeping until they come in for another set of vitals. She has until 2a.m. and then up she will be once again. Under the tent she is at 98% oxygen saturation. The highest she has been all day. Her heart rate is lingering in the 150's and after a day like this that is a relaxed rate.



After speaking with the doctor who is on tonight I learned that the fluid is already re accumulating in Ash's lung. Where is it coming from is what I would like to know. They have no idea. The thought of putting her through this procedure again in the morning makes my head spin. I am so discouraged. They may take her into the OR in order to get a better look and better position. I don't even know what to say. I am numb.


Ash continues to run a fever and vomit. She has a nasty cough that seems to bring on the episodes. She just doesn't feel good tonight. I guess if I were looking for the positives from today's situation I would find: 1. We were able to pull of 200ccs of fluid. 2. We were able to avoid the ventilator(so far. The doctor tonight says he won't be surprised if she in on by morning). 3. God has blessed me with friends who are willing to go out of their way for me on what proved to be a very long and trying day. All in all we are still blessed.

I am so tired. My feet and back are hurting from standing next to her bed for 11 or so hours today. I have finally taken a shower and am now ready to sit next to her crib and try to close my eyes. I pray tomorrow brings us good news and not the expected course. Have I told you lately how very much we miss home? Ash and I want to go there more than anything. Tonight makes 4 weeks since she has been in her own crib in the nursery and 4 weeks since I have laid next to Dave holding his hand underneath our pillows. How I wish we were surrounded by Blake and Allie and Dave tonight. When I close my eyes I see their faces and I dream of being home again. Perhaps tonight will be no different.

My thoughts are scattered and I am having a hard time putting them into words. So much has happened today. Things just kept getting crazier and crazier and before I knew it we were tapping into Ash's left lung. Once you get on the slippery slope its hard to stay upright and almost impossible to get off.


I spent the entire day standing next to Ashley Kate holding an oxygen tube to her nose. She refused to keep a cannula or a mask on so my only option for keeping her off of the ventilator was to hold the oxygen to her face. I could not put the tube down in order to update and I apologize for that. I know you have all been praying and waiting for some kind of word.


We tried to help her lung resolve something by treating her with CPT every hour. After 4 hours of treatments we repeated the chest x-ray hoping for some resolution but there was none. Disappointed and frightened as I looked at the picture of where her lung should be I knew they were going to have to go after the fluid. You could not see her left lung anywhere on the film. The entire left side of her chest was white. Our surgeon came in and explained what she hoped to accomplish by being allowed to tap into the lung. I cried as we went through the steps and finally gave consent. One of the hardest things I have ever done is learn to live with myself after knowing I signed consent for them to tap into her heart last January. Today my goal was to help her breather easier, but I wanted to make sure she would still be breathing during and after. Nightmares still haunt me from the last attempt at draining fluid.

At 6p.m. the surgeon inserted a needle between Ash's ribs into her left lung and began to drain fluid. So much fluid that she told me she needed to place a chest tube and leave it in. So far we have pulled off 200ccs of fluid and it is still draining. Currently Ash is inside an oxygen tent and not on the ventilator. She has not come out of the sedation just yet, but her eyes are open and she is making whimpering sounds. We have left the fluid around her heart alone. At this point her heart is beating strong and we are hoping the effusion will dissolve on its own. The effusion in the lung was an emergent situation because Ash could no longer breathe.

Not only did the fluid drain but I feel as though I did as well. I am exhausted. I am thankful. I am out of words. I know this post is very scattered and may not make sense, but I also know you have been waiting for something. Thank you for your patience and thank you for your prayers. Trish

things went from a little bad to a whole lot worse as the morning hours continued on. I don't have a lot of details or direction just yet. Ashleys left lung is either completely collapsed or encased in fluid. The x-ray shows a "white out". They have done an ultra sound but of course the tech will not tell me a thing. I told her she doesn't have to. I have been her before with Ash and I can see the fluid. They are talking ventialtor, I am praying for it not to happen. She is on 12 liters of oxygen and still struggling. We have moved into the PICU once again. Remember long ago when I shared how quickly Dave and I have learned to be thankful for our blessings? They can slip away just as soon as they show up.

I think they would like to tap into her lung and drain the fluid. I am having a hard time giving consent for anything like that. She came so close to dying at the last attempt that I'm not ready to let them try again. The team is getting ready to round so I will let everyone know something as soon as I can.

I hope you guys are out there today. Your prayers are so appreciated. Trish

I'm sitting awake helping my sweet Ashley Kate as she struggles once again through a difficult night. Her little body trembles as she fights severe nausea. With every movement she begins a series of retching and vomiting. It is so so sad. I can see how very tired she is and she looks at me so confused. Her fever remains around 100.2. High enough to make her feel yucky, but too low to warrant a culture. I have her uncovered, lying with a cool towel on her face and she breathes heavy under the weight of much fluid. Just another night for Ash, but underneath the struggle we have hope.

How beautiful to hear the light hearted sound of her daddy's voice tonight. For the first time in over 3 weeks I could hear the joy hiding behind his concern. "That is the best thing you could have ever said to me!" This was his response this afternoon as he slipped out of the conference to take my call. I know he must cringe every time he looks and sees my number. Never knowing what news awaits him as he calls me back. Tonight I could hear the hope and joy that he had been given with those two words. No Rejection. In a transplant family's life there is no greater statement. "You have just won the lottery!" couldn't compare. In a way we did just win. We won more time with Ashley Kate. Nothing could be sweeter than knowing that we now have the hope of returning with our littlest one to our home with Blake and Allison.

"Kiss her and tell her how much her dad loves her." These were his final words tonight. "Trish, just make sure she knows, OK?" So as I lay my head next to hers and she pleads for help with those amazing eyes, I kiss her forehead and say, "Do you even know how very loved you are? Your daddy loves you. Your mommy loves you. Your Blake and Allie love you. The world loves you. Jesus loves you." She just looks at me. I wonder if she understands? What must she be thinking?

Although she is feeling so yucky I still have this hope hiding deep in my heart. Its like I'm hiding this great secret from her. I want to tell her that God has so much more in store for her life, but tonight is not the right time. tonight I'll just stay close to her and clean her up and comfort her the best that I can, and maybe tomorrow she will feel like listening. We have hope again. Hope for her tomorrow. Hope for the next tomorrow and the next and the next. We hope for her future once again. What a gift! Oh,I know the road ahead is still long, but knowing things are looking up for her makes us want to run that road and never look back.

Hope. Its a beautiful thing. God gave this mommy and daddy a gift today. I have no idea how many tomorrow's He will grant us with this tiny pickle, but just knowing that we made it through another day is enough for now.

At the end of Ashley's biopsy the GI doctor looked at me and said, "Trish, lets just be encouraged." I love this guy! He has the best, most positive attitude of any doctor we have ever had. He is so dedicated to these children and their well being. I truly appreciate him and I can't tell him that enough. We all love him. So, I am taking his advice tonight and I am going to "be encouraged." From what we saw on the screen this afternoon the bowel looks to be a little better in some areas. For that I am thankful. In other areas it is obvious that it doesn't look too good. I will be interested to see if the pathology supports what we have seen with our eyes. Tomorrow we will know if the treatment has worked or if we hit her with even bigger guns in our attempts to rid her body of rejection. I can't imagine the side effects getting any worse, but they assure me they can if we have to switch to round three. It will include a different immunosuppressive drug that we have never had her on. All I know is that the doctor told me, "If we have to use that it won't be pretty." Again, lets just "be encouraged", and not worry about that until we get there. I truly believe God gave me those words today, and I am going to hold on to them.

Ash is grunting pretty hard this evening. The nurse thinks it is because of the effusion. I hope it is only the distension in her tummy from the scope. We will just watch her through the night and see what happens. She feels pretty miserable tonight and I have tucked her in under a soft blanket and dimmed the lights so she might drift off to sleep. Even all puffed up she looks sweet and beautiful under that pink blanket. Her cheeks are a little flushed making her look like she is rosy and glowing. I can still see those long lashes and her pouty little lips. As she lays there I sit and stare at her beauty and I am thankful she is here.

Dave and Allison are out on date night. Dinner and Putt Putt. Its alway the same. When they first started "dating" they carved their names in the tunnel at the putt putt place. Dad loves Allie. Each time they go she searches the tunnel to make sure it is still there. I love that! She called this afternoon and asked me to help her figure out what to wear. How I wish I were there with her to help her get ready. Thats always the funnest part of date night. I love the time we spend together as she gets ready. She was really looking forward to going out with just her and Dad. I am so glad that Dave takes the time to make her feel so special. Blake called and shared with me that he was having a great night. He is watching the Red Sox and Indians game and rooting for the Soxs. The winner will proceed to the World Series and we can't wait for that. He is so excited as he gives me the run down of the game. I just love that kid. I miss him so much my heart aches as I hear him talk and talk. I wish I was home watching the game with him. Nan made his favorite chocolate chip cookies for him tonight and things just couldn't be better for him is what he said. She sure did put a smile on his face. Blake's two favorite things in this world are baseball and chocolate chip cookies. What a great way to spend a Friday night.

Well, I am going to go pick up our baby gherkin and rock her for a while. I can't stand to hear her struggling like this. I hope I can eventually get her to fall asleep. Thank you guys for supporting us through such a tough day. I know things are going to get better, after all we are concentrating on the phrase "be encouraged." Thats the best thing that he could have said to me today. Good night everyone. Trish

This is our plan. Wait and see what happens. Ash has a pericardial effusion and a plural effusion. Basically as a result of the extra weight and fluid she is carrying because of her rejection treatment. As I understand it an effusion is a collection of fluid. There is a small amount in her pericardial sack and some around her left lung. Options? We are waiting to see if we can diffuse them with lasix. I won't even consider the other option of tapping into them at this point. They haven't asked to and we aren't going there. We discussed my fears and with good reason they understand why I fear those words.

The CT also showed that the ilius(stall or stationary predicament of her bowel) remains. The numetosis(?) remains as well. That is the infection or bacteria in the wall of her intestine causing much of the distention and swelling of her abdomen. We are waiting these two conditions out as well.

The scope will give me a visual to compare to what we saw a few days ago. The biopsy results will be in tomorrow to tell us if the treatment has worked.

Ash is sleeping. So hard that she snores (or more than likely is snoring because of all the extra fluids). She looks enormous. None of her clothes stretch around her. It is very sad for me to see her this way. Her eyes are squinty and slanted because her face has morphed into something very large. She continues to claw her skin until it bleeds and her hands and feet continue to peel or sluff. She looks so sad and there is nothing I can do about. She is grumpy and irritable. I miss her sweet smile, her laugh, and her twinkle.

It is such a struggle not to take this out on Dave. I am so frustrated and it shows during our conversations. He is back home working, raising kids, and running schedules. I am here waiting, sitting, soothing our baby, and feeling abandoned. I know its ridiculous, but its honest. What a distance and strain these situations can instantly place on a marraige. Thankfully we are as solid as they come and we can try and understand each other's frustrations. He is working on getting me a car so that I might be able to take care of the necessary things of life and I am working on getting friends to sit with Ash while running those errands. I am sure it will all work out, but it can get so stressful when you throw it all on top of things like effusions, infections, rejection, scopes, and biopsies. Its just everyday life and some times its hard.

More than anything it is the "wait and see" approach that has gotten to me today. I'm still learning to be good at that.

That is where they are trying to send me. I would swear to it (if I was in the habit of swearing).
This morning I woke to the news that an echo cardio gram had been ordered to rule out a pericardial effusion. Did you read those words? PERICARDIAL EFFUSION! Are you kidding me?

Let me take you back to a day in January where we had a CT scan performed the day before, warranting a closer look with an echo, finding an effusion around Ash's heart, warranting an emergent situation that required my consent to allow them to "tap" into her pericardial sac with a needle, reciting that the risks of puncture were only 5% and in 30 years they had never seen it happen, resulting in yes, that 5% was indeed us and my sweet Ashley went into cardiac arrest with a full code called, CPR on her tiny chest, breaking ribs, but ultimately resulting in saving her life, a crash cart running down the hall into her room and an emergency intubation, and cardiac surgery the next morning( this has got to be the world's largest run on sentence ever). I can promise you I will not be signing consent for a bed side procedure if it comes to that.

So now I am waiting for an explanation and I have been sick to my stomach for over 2 hours now. Honestly, dreams do come true, but unfortunately so do nightmares.

I am starting to calm because no one has returned and asked for that signature. 2 hours is promising don't you think? Perhaps they are just covering all the bases. I just wonder what triggered the investigation?

I wish if they were really going to push me over the edge they would just do it in one big push and not dangle me over it. Some days it really does feel like that is what is happening.

I've had lots of time on my hands the past three weeks. Day after day of sitting in a hospital room affords me hours and hours of time to read. I just completed a book that spoke to my heart in an amazing way. In one paragraph of the book the author, who is telling her own story, writes this:


"I realized that my depression and anger against God weren't doing anything to make the situation more bearable for us. In fact it was only making it worse. I knew that I had a choice to make. I could give in to my resentment and allow it to dig me deeper and deeper into a hole, or I could choose to believe that what God's word says is true is whether I was feeling it or not."

Exactly! Is what I thought. I understand exactly what she is saying. Over the last two years I have had a battle raging inside of my heart. Raging between what I know is truth and what I feel at the moment. I have fought not to give in to the "not feeling it right now" mentality. I wake up every day and choose to believe Him no matter what. Oh, sure on the good days its easy to believe He loves Ash and He loves us, but short bowel? liver failure? transplant? sepsis? cardiac arrest? lymphoma? and now rejection? On those days the battle tries to rage. Not every day is a victory. Not every day is easy. Not every day do I understand. Not every day do I "feel" His promises, but every day is a blessing. Every day is a gift. Every day does belong to Him. Every day He is there waiting(patiently might I add) for me to decide. Trust Him or don't? Believe in Him or not? Turn to Him or run from Him? It is a choice each and every day and on the bad days it can be a choice each and every hour.

I will never understand the whys? It will never make sense to me. Will He heal Ash or won't He? Will she grow up to be a young lady some day or not? Only He knows and only He has the right to decide. I don't always "feel" saved. I don't always "feel" loved. I don't always "feel" peace. I don't always "feel" He is near, but praise Him because He always is! His love for my sweet Ashley Kate is not based on a "feeling". My eternity is not based on a "feeling". However it is based on truth. His truth. His promises.

"My hope is built on NOTHING LESS, than JESUS blood and righteousness."

When the walls of this room feel as though they are going to close in on me and when the emotions that come feel as though they will crush me, I choose to believe that He is good, and He is able, and He is near. Some nights I cry out to Him and tell Him that I don't feel anything. I lay with my eyes closed next to her crib and plead for help for her. I need Him more than anything right now and running from Him is not an option whether I "feel" like it is truth or not.

Thank You Father for not NEEDING to know me, but for WANTING to. I am blown away by the depths of your love for me and for my sweet Ashley Kate. Keep me close no matter what YOU decide to do. Allow me to see You in her face each time I look at her. Allow me to
hear You in her voice each time she laughs. Allow me to feel You in her touch each time she reaches out for me. Allow me to always be changed because of loving this little girl who You have given to me. I am grateful for each breath, each moment, each day, each experience. Thank you.

...but who's counting? Seriously, how can we not? Realistically we have 10 weeks until Christmas. I would like to be home in time. This our new goal. Christmas at home with all five stockings hung on the mantle, all three kids in their own beds on Christmas Eve, carols playing throughout the house, and Dave and I snuggled up on the couch as we prepare to stuff stockings and finish the last few packages. This is what I'm dreaming about today.

Ash is having what I hope to be the last of her tough days. As I type she is receiving the last of three doses of treatment for rejection. Her biopsy will be at 3:30 tomorrow afternoon and hopefully the results will show us that it has worked. Her bowel continues to bleed. They say it is caused from the bowel being "friable" while it is in rejection. I am taking that to mean fragile and inflammed, but not sure I have the correct understanding. Her ostomy is filling up with bright red fresh blood again as opposed to yesterday's old, dark blood. She just came back from CT and is not wanting to be touched, talked to, or messed with. I tucked her in under a blanket and have stepped back to give her some space. I try and understand how bad she must be feeling. When I am sick I don't want to talk, be touched, or be bothered. I'm sure her feelings are that times about a thousand. She continues to have sleepless nights and days and her little eyes are so exhausted. I am hoping she will dose off soon.


I have posted the correct zip code and I apologize for listing the wrong one. I know the one now posted is correct because I have received mail with it on there.

Michelle, I think your gift for Ashley sounds beautiful and it will allow me to share your story with her someday. Thank you.

Some have asked why I don't stay at the Leid while Ash is in the hospital. Yes, we know it is there. We have stayed there for a while, but when I am here alone it is not an affordable option. It runs at a costly $65 a day, $2,015 a month and I don't feel right taking that much away from my family at home. It is nice and comfortable and "doable" for us on the short term stays, but not realistic for me on an extended basis. If I insisted I KNOW Dave would sacrifice to make it possible, but I prefer to stay close to Ash anyway. Thank you for wanting to let me know it was an option.

I did have the opportunity to get some towels. A friend of mine here in Omaha ran the errand for me and I so appreciate it. I also appreciate those of you who were so willing to send me some. Your thoughtfulness is appreciated as well.

Our little camera is in the mail and on its way. Dave dropped it at the post office this morning. I am so excited. Now I just hope I can figure out how to install it. We should be visiting with each other by the middle of next week.

Just to mention, I have NOTHING but respect, gratitude, and appreciation for all of our doctors and nurses. Just because we may disagree on a few things does not mean that Dave and think there is a more appropriate hospital for Ash. We made a life time decision when choosing this transplant center. Switching teams is not an option. We trust them. We like them. We respect them and I believe the feeling is mutual. We approach Ashley's care from different ways. They are the doctors, we are the parents, our concerns are not always the same. We work together, meet in the middle, and make the best decisions possible for Ashley Kate. Some of my very closet friends in the world are the nurses in this very hospital. I love these girls and they love our baby. Not every nurse is going to become a close friend. Not every nurse is going to like us. Not every personality gets along together in this world, but my respect for them is always there. Not much I can say about the old cribs. I think we all agree the new ones are a an improvement and we are blessed they are now available. Thank you for trying to be helpful. If you have ever stayed in a hospital for an extended period of time then I am sure you understand that the germs and virus' run rampant and it is just not a clean place to raise a child.

I hope I have answered all the questions posed or suggestions made. I am not trying to ignore anyone. Some days it is just more difficult to post than others depending on what is happening in our room. If you have any more questions feel free to ask and I will try and answer to the best of my ability. Take care my friends and enjoy your evening. Trish

This morning I am reminded that the Father is still teaching me though Ashley Kate's life. What a reminder He has given me as I have been given the opportunity to share parts of her story from the very beginning this morning.

As I was sharing I felt such peace and amazement still at the wonderful works He has done. We have a student nurse this morning who is being taught. I only agree to observation with students. I want them to have the opportunity to learn, but I don't want Ashley to ever be at risk so I agree to allow them to come in and observe but not be hands on. Agree or not that is the compromise Dave and I are comfortable with. Anyway, one thing led to another this morning and the student asked me if I would share how Ashley became ours. ( Let me just share that the fact that so many people are privy to Ash's birth history when it is no longer relevant to her care is an area that the Lord is having to work on in our parental hearts. Our goal is for Ashley Kate to grow up in our community and not be faced with information that she is not ready to hear or to be told things that as a family we had not been comfortable sharing with her yet. We would like for charts to reflect only what is currently an issue and in our opinion her birth history does not need to be relayed two years later to the nurse caring for her that particular day. You would not believe the comments made to me, questions asked of me, or situations I have to deal with because of this manner of sharing, but that is beside the point.) The goal of this post is to share with you the lesson God had for me this morning after a difficult night of struggle.

As I began to share the parts of her story that God laid on my heart what healing I felt taking place in the heart of this mommy. I love to share the love of Christ with others that spills out when I tell of our little one's journey. No life has not been easy, and yes Ash has fought battle after battle, but the Father's hand has been evident every single day of her life. To be reminded that He is still here with her and with me was so beautiful. Loving Ashley allows me to love others in ways I never knew I could. I look at people with different eyes. I feel compassion for people I have never met. I drive down the street and instantly feel compelled to love those on the side of the road or those who I might have never "seen" before the birth of my daughter. Her life has removed selfish blinders that once covered my eyes. I love people because Christ loves them and that is reason enough for me to go out of my way to show them His love. How humbling it is to have the opportunity to share her story with strangers. We instantly connect and I can love them for who they are and where they are in that moment with no blinders, no judgements, no restrictions. This is who I am since the birth of my youngest daughter because of His work in my life.

Yesterday was hard. I have promised to not lie about the ups and downs in this journal. It is a record of her life and how we live it day to day, but it is also a record of His work and His presence in the life of our family. I had a good cry with Dave last night. I poured my heart out to my best friend, and in the end it was decided that we know where she can go and we will do our best to get her there once again. As a mommy my heart hurts in this situation, but as a believer I cling to the hope that He gives. Up and downs are going to come. The lessons are always going to be there. Looking for them and applying them is the key to the growth He has in store for our family.

Our student nurse is here today to be taught, but it is I who learned the most from her presence in our room. God used the opportunity of sharing Ash's story with one more person to teach me that He is still in control and I wouldn't want it to be any other way.

Thank you for understanding even during the harder posts of this journal and for continuing to pray for us and to love us. What a role you play in His plan for our sweet Ashley Kate. I am humbled at the choice you have made to be a part of this record, this journal, this story that involves the hand of the Creator in my baby's life. Thank you. Trish

I would have done things differently.

I would have lingered longer in their doorways.

I would have spent more time just playing.

I would have taken Ash more places.

I would have laughed a lot harder.

I would have listened to them talk forever.

I would have hugged them a million times more.

I would have stayed awake all night visiting with Dave.

I would have gone out on more dates.

I would have had mine and Al's nails done.

I would have watched Pirates 3 a thousand more times with my son.

I would have hugged my mom and told her how much I appreciate all that she does.

I would have held onto Dave's hand and been reluctant to let it go.

I would have rubbed their feet every night not just after their games.

I would have told them how much I love them over and over and over again.

I would have insisted on going away for the weekend with just the two of us.

I would have cuddled longer on the couch with my kids.

I would have let them get Ashley Kate up from her crib whenever she fussed about going down for her naps.

I would have tried harder to lose the weight I had put on during my last hospital vacation.

I would not take even one minute of life at home together for granted and I would have never been so naive.

I would have tried to prepare my kids for the possibility of us leaving again.

I would have prayed harder for her protection from rejection.

I would have done things differently.

It has been a rough day. The tears have not stopped. I hurt for Ashley Kate and I hurt for Blake and I hurt for Al. I wanted to be the one to fix Allie's hair this year for school pictures and I wanted to be there to help Blake with his castle project.

Ash has finally stopped growling and has closed her eyes for the first time in 30 something hours. We have struggled through today and although I am thankful God gave us another day together I am glad this one is ending. I long for the day when they tell us we can go home and be a family again. Goodnight and God bless. Sneak into their rooms and kiss your children an extra time for me tonight. Trish

This morning I wanted to give you a little tour of our new "home". Ash and I have tried to make it feel as welcoming as possible. If they would only allow a couple of rugs to be placed around the floor then we might actually be settled. Anyway, here is what we have been blessed with and why we are so thankful.

This first photo is of our "bedroom". You can see Ash's crib. We are thrilled with this crib because it is one of the new ones. They had not come in before we left Omaha the first time. It is clean and white and attractive as opposed to the dirty, silver, unattractive one we used to use. Isn't it funny how God puts little blessings all around us.


This photo is of my bed/reading corner. I am so thankful for this bed. It lays out completely flat and I no longer have to sleep in my "favorite" recliner. This is truly a gift! I wasn't sure I could go another few months in that recliner. I love the window. It doesn't have a view, but it does have sunlight and I love that.



This a picture of our living room. Attractive don't you think? I actually requested this chair because I needed something to rock my sweet Ashley Kate in. Even though it is rickety and ugly I am thankful for it. It does what we wanted it to do, and it is a nice place to curl up with her under my blanket.



This is Ashley Kate in her "new" crib enjoying her newest book. Brenda, she loves it. It has lots of pictures of bright things and we can look through it for an hour without her getting tired of it. Thank you so much for thinking of her.


This is what her current reading list includes. I Spot! Yep, that's it. She doesn't want to look at any of her other books. I love the cover of it. A nice big picture of her "puppy". Sometimes she is content to just stare at the front cover and rub her little hand across Blue's picture. I often wonder what she is thinking while she does that.



This is what I am currently reading. All by Max of course. I love the colors on the covers. They remind me of the fall season which is my absolute favorite time of year. I am sad that we are stuck on the inside and not allowed to venture out in the cool air so these books make me think of being outside. The titles are, Just like Jesus, When God whispers your Name, and In the Eye of the Storm. I would highly recommend them. If you want to be ministered to while you read then this is the author for your. Thank You, Lou Ann for bringing them.


Outside of my baby the absolute favorite thing in my room is found in this next picture. My sweet friend Heather knows me well. Yesterday she stopped by and gave me these. I love them and I almost cried. Since I can't go to the pumpkin patch she brought it to me. It just makes my little "office" so inviting. Thank you for thinking of me. I love ya!



Finally I share with you my connection to all of you. This is my favorite place to spend time when Ashley Kate is resting. It makes me feel like I'm not here alone. It gives me a place to share the thoughts that run through my mind and my heart. I gain perspective as I write to you and I believe it keeps me sane in an insane place. Thank you for showing up on Ashley's story and for encouraging me. Its like you are here with me and that means more than you will ever know.

I really wanted to share pictures of MY bathroom and shower, but I felt that was going a little too far. Just believe me when I tell you that I am SO thankful for that room. It may be old and dirty, but it is private and it is a place for me to relax in as I stand there until the hot water runs cold. I never thought I would be so grateful for a bathroom, but trust me when I say that I am.

I realize its not home and its not very inviting, but we are making it as comfortable as possible. The room smells nice (its that Hawaiian breeze I've been telling you about). I believe it is a must for all hospital rooms. I'm not allowed to burn a candle, but thanks to Heather I now have one to smell when I am longing for home. We keep the music playing softly in the background and pictures of our Blake and Allie close by. Making the best out of what we have been given.

Ash is struggling a lot with her treatment for rejection. She cries, I cry, and sometimes our nurses have tears in their eyes as well. Two more days and then we hope our biopsy shows that it made a difference. We are giving her some sedation to try and keep her from hurting herself. After a long night of screaming, clawing, and pulling she is finally resting. Her bowel continues to bleed at a slower pace than the other night( a result of the rejection). We are getting her ready for another blood transfusion. The only thing we can do for her is support her with blood products. Going in to stop the bleeding is not an option. She is safer and better off if we allow it to clot and stop on its own. Your prayers for our gherkin during this time are so appreciated.

I know this was long and probably boring too, but some had asked to see our room so here it is.
Our address at the hospital is:

Ashley Adams
Patient Mail
Room 6474 - 6NS
P.O. box 6159
Omaha,NE 68106-0159

For I was hungry and you fed me. I was thirsty and you gave me drink. I was a stranger and you took me in. I was naked and you clothed me. I was sick and you visited me. I was in prison and you came to me. The King shall answer, "In as much as you have done it unto one of the least of these you have done it unto me. Matthew 25



You have reached out. You have given . You have surrounded us in your love and prayers. You have visited. You have written. You have encouraged. You have lifted us up. For each and every act of kindness bestowed upon us you have been His hands, His feet, His voice. For this I say thank you.

Never have I known such love and such community. Since Ashley's birth I have seen first hand what it is to be a part of the body of Christ. Because we hurt, you hurt. Because we rejoice you rejoice. It is an amazing thing to be loved by this group of people. I will never be the same.

Ash is shiny clean and all tucked in. I hope she feels like sleeping tonight because this mommy sure does. We had a good day. We rocked for a while. We played and read books. We enjoyed an episode or two or maybe three(whos really counting?) of Blue. We visited with dear friends who were sent our way. Your time here with us was more than a blessing. Thank you for going out of your way to come and see us.

Ornery(I meant to say sweet) Ashley Kate attempted to pull out her new central line. She removed her ostomy bag. She clawed her tummy until it bled. She pulled out her hair and she scratched her ears until they bled. She is fighting to control her shaking and irritability, but unfortunately she is losing. She thrashes in her crib and yells at me. I feel so bad for her. If only she understood what was causing her to feel so yucky. Her blood loss has stopped. She is now only shedding old, dark blood into her ostomy. That is good news. I was really scared.

I'm still battling this feeling I have that things could turn around at any moment and we could be on our way home. I need to be real, but I so badly want to take Ash back to our little yellow house in Texas. God continues to show me new things about Himself, His people, and His plan each day that I am here and for now I think that I am supposed to take it all in. I still cry. I still wonder. I still struggle, but overall I know He is working. Today I choose to remember that there are kind, loving, selfless people in this world and for those He crossed my path with I am grateful. Thank you again, and again , and again. Good night my friends. Trish

The doctors have rounded and the biopsy results are in. Ashley is in current and active rejection of her small intestine. Although this is bad, the surgeons want me to think of this as good. We finally have definitive proof and know what to treat. She will begin the 3 day treatment for the second time today, and then we will scope again on Friday to see if things have changed. I am still wrapping my mind around this news and figuring out what to do with it. No tears. I don't have any left. I need to be supportive and positive and give stability to Ash. Play time. Cuddle time. Story time. Mommy time. This is my plan. Keep life as normal as possible in a very "non" normal environment.

Ashley's blood loss has slowed and we are all breathing easier. Her surgeon just laughed and said, "They are working together to find things to send me over the edge." They have gotten close, but I'm not jumping yet. Please pray for Ash's reaction to the treatment for rejection. It has miserable side effects for her and she is already struggling. I would just like for our sweet baby to return, but for now we will do what we have to do to protect her organs. She is disappearing in appearance and personality and that breaks my heart. Not too mention how awful she feels. They asked my thoughts on the treatment and I said, "You know I don't like it, but we don't have a choice. Lets get her through this and then work to get her back." That's exactly what I plan to do.

Someone made a suggestion about a video feed between our home computer and the one I have with me. Thank you for that suggestion. We are working on that. Dave is looking into it and then when he tells me what to get I will ask one of my friends to pick it up for me. We like the idea of having a set time each evening to spend "together". Blake and Allie need to see Ash in order to stay connected. This way we will be able to pray together. Say goodnight to each other. Ash will hear their voices and will be able to see them and I think that is wonderful. Again, thank you for the great idea. I know this will bless all of us as soon as we get it together.

Please know how humbled and grateful I am that so many of you would like to do something for us while we are here. Your offers have not been ignored and have not gone unappreciated. I guess I have just been hoping that we were leaving soon, but this morning the first thing they said in rounds is, "No, your not going home". I didn't even ask. They just wanted me to know. I do not wish to take away from anyone else's family. I know that we all have responsibilities and children and life to take care of. I would feel awful thinking that I had made things difficult on someone else. Just know that your thoughtfulness and your offers are greatly appreciated, but I can not make a wish list. It just doesn't feel like the right thing to do. If you are feeling led then please know how much I appreciate it. My love language is gift giving and nothing makes me happier than to give a gift and be a blessing so I completely understand what you are feeling. I would never want to take that blessing away from you either. I will leave it at that. More than anything your prayers and your encouraging words are what I value. I love you guys for offering.

Ash is watching Blue all kicked back in her crib. She doesn't like the idea of having a bath, but after last night she desperately needs one. I guess I am going to wrestle her for a while in order to make her smell less like a pickle and more like a princess. Wish me luck! Take care guys. Trish

I will not hide the fact that it has been a frightening and difficult time for me, but this morning I have found myself at peace with what is happening and I am able to look past this and find the blessings that surround us.

The biggest blessing is that my tough little one IS stable. She is much stronger than she was last year at this time and you would be PROUD to see how she is holding on. Her vitals are strong. Her blood pressure is amazingly strong and the fact that God is protecting her does not escape me.

She is losing a lot of blood and her bowel is very ill, but she is not in pain. She does not cry or moan or grunt. She looks comfortable while she sleeps. I realize she is weak and anemic, but she is not struggling and for this I am thankful. To see her hurt kills me inside.


Her labs looked better. Her h and h did not drop as quickly as it had been. She is currently not receiving a transfusion. This is the first hour since we arrived here on the floor that someone else's blood has not been running into her veins. I think that is progress. I can't express how grateful I am for all those who donate blood. You have saved my sweet girl's life and you are loved. We will not check again until 12:00.

This room is a huge blessing. Quiet, peaceful, dark for her to rest in. I am so grateful.

For diet coke and cheerios I am thankful! They have become my staples during this stay. Thanks Holly for restocking me. I love ya!

Thank you for praying for us this morning. I am feeling at peace and I am gaining a little more stability. I know it is a direct result of the many prayers being said. For sticking it out with us and choosing to walk along side of us I thank you. I know it is difficult. Expecting to hear great news and then being let down. The emotional twists and turns, but oh what joy I hope you have been a part of when God's hand reaches down and pulls her through. It is exhausting and I appreciate your faithfulness. Somehow I hope you are blessed as much as you bless us.

I am going to lay down for a little while. I will share what I know when I know it. Thank you again. We are still blessed.



(As I showered this morning I almost cried because I was so grateful to have that shower. It is the best shower I have had in weeks! Plenty of hot water, lots of room, great water pressure, and no one pounding on the door trying to get in. I couldn't thank the Father enough for that shower. Privacy is a beautiful thing! All I need now is a couple of really good towels and I might think I was on vacation (thinking positive again!).

Ash is bleeding. A LOT. She hasn't stopped bleeding since the procedure this afternoon. She is having no stool output. Only blood. It is very, very scary as I empty hundreds of ccs of blood from her ostomy bag. It won't stop flowing. I don't know what is going on. Thankfully she sleeps through it all . We are looking for answers, checking her clotting factors and labs, but at this rate we could transfuse all night and just break even. She has some very large blood clots coming through as well, but nothing as large as yesterdays. We are all a little stunned by the amounts of blood coming out of this baby. I think I'm in over my head because my expertise ends at putting a band aid on the children and this problem is too big for a band aid. What is happening? It feels as though our "normalcy" has slipped through my fingers and now we can't get it back.

My heart hurts for Ashley Kate and all she endures. She is sweet, and beautiful, and strong, and amazing, and innocent. I love her so much and I am helpless. Nothing I can do will ever fix her broken body. All I can do is hold her and tell her how very much she is loved. What precious days these are with my youngest daughter. She is especially cuddly and wants to be close to me. I love rocking her and looking at every detail of her tiny face. I love her. I love her spirit. I can see it hiding in those eyes. She wants to feel better. My sweet, sweet baby girl we are trying to get you back home. When you are in a safe place we will go there. I promise.

Praying for a band aid, for an answer, for a solution.

Update 6:30a.m. -
We have just completed another blood transfusion. She continues to lose blood at a very fast pace. She has had blood pumped into her the entire night(literally). We are going to wait 30 minutes and draw another set of labs to see where we are before deciding on another transfusion. She is losing about 1 gram every 2 hours. If it continues for 24 hours then they may decide to do something to try and stop it. Over the last 8 hours she has lost 644ccs of blood. No stool, only blood. It is very clear that she is bleeding inside the bowel but no one knows why. She has slept through most of the night even though she has had her blood pressure and temp taken every 30 minutes for the last 12 hours. She is exhausted and weak and puts up very little fight, but as always I see her spirit hiding in those eyes and she is asking for my help. We will not know much more until after 7:30 when her labs come back. They have been in contact with the fellow all through the night, but I will feel better once her team is here to assess her.

I am feeling a little better every day. Mommy and I miss you guys very, very much. I want to come home so we can read my new Blue's Clues Book. Ms. Brenda (my new friend) brought it to me. I like to look at the pictures with Mommy. I can sit up now because my tummy is feeling better. I gave mommy a high five today so she would quit asking me. She is making me crazy. I don't really feel like playing that much, but I do just to make her happy. She sang me a silly song this morning that made me smile(a little bit). I held mommy all day and rocked her so she would not be sad. It makes her feel better when I hold her. I moved in to my new room and I like it a lot. It is very quiet and very dark so mommy and I can sleep a lot better. I also have a big T.V. to watch Blue on and this is making me very happy. Mommy hung pictures of you guys on my wall so I can see you every day. I love you and I want to come home soon. Please pray that my new organs will feel better so we can come back. Allie, give daddy xmo's for me tonight. Blake, rip daddy's glasses off his face so he won't forget me. Daddy, make sure Blake and Allie know how much our mom misses them and loves them. Night, night. Love, Ashley Kate

Today's ileoscopy was definitely different than any other we have ever had. All of Ash's scopes have been done in the ICU, but today we were taken to the GI lab. The anesthesiologist were there and they put Ashley asleep which we generally do not do. Things were just different, not bad only different. We went to recovery for a while until she woke up and now we are in our new room.

Our GI doctor told me the bowel was "angry". He didn't have to tell me. I already knew things were not looking good. Usually I see pink, healthy tissue all the way through the "tunnel"(that's my term not theirs). Today I saw very little pink, healthy tissue. The tissue was gray in places, a yellow color in others. Things are definitely different inside that organ. It is not the beautiful bowel I am used to seeing. I could feel a panic coming over me as we "explored" the graft for biopsy spots. I know things don't look good. We did see a couple of areas where some regeneration was attempting to take place so I am going to try and be encouraged. The only choice we have at this point is to wait. We wait for pathology to give a report on the biopsies and we wait to see if Ashley Kate's transplanted bowel will recover and function again.

I am nervous about all that is happening. I think she looks much better. She is awake and she is attempting to play. She actually grinned at me for the first time in 3 weeks. It was small and not very convincing, but it was there. She is very stable and for this I am thankful, but there is something wrong with what I saw on that screen this afternoon. We may be here a while.

Ash is requiring another blood transfusion. That will make the 4th or 5th one. I can't remember for sure. As soon as it is finished which will be another 3 hours we will begin an IVIG infusion. This is a blood product as well. Immunoglobulins to support her immune system. The best I can figure out from listening this morning we ran Ash's immunosuppresion very low this whole time because of the tumors and her chemotherapy and as a result she has slipped over the line into rejection. Now we battle back for as long as her bowel will battle. All the while praying that is recovers and that it remains a mild case of rejection.

We are trying to settle in to our new room. The new room number is 6474. Still figuring out where things go and how the unit works. We do have a little more space, but less storage. The most important thing is that we brought our air freshener and it is already starting to smell like home. The "Office" is up and running and now I am trying to decide where to put the bedroom. The biggest perk is that we are allowed to use our bathroom and shower. What a blessing!

I realize this post is long and I am rambling. I tend to do that when I am nervous and I am definitely nervous about all I just saw. Tomorrow's results can't come to soon for me. I function better with a plan. Obviously I am still being taught the lesson of letting go and just allowing God to do what He is going to do.

Ash and I have been awake since around 4 this morning, but up until that time we slept like babies. That's two nights in a row of good, rejuvenating rest. I think its amazing what a good nights sleep can do for you. We have rocked and sang and spent time just being together. I sat her on the bed to put some clean jammies on her and she reached out to place both of her hands on my chest and give me a little pat. My heart melted! I kissed her on top of that beautiful head and scooped her right back up. The way she chooses to show affection toward me is so, so sweet. I love this baby very much.

Our room is very peaceful this morning. The lights are still off and the curtain is drawn. The room smells fresh and inviting from our favorite air freshener. I much prefer the smell of a creme brulle or butter cream Yankee candle burning on the mantle, but for now Glade plug ins Hawaiian breeze is doing the trick. Ash is tucked in her crib under her quilt that Aunt Toni made her and we are listening to a beautiful classical Christmas arrangement. I know some of you may be balking at the idea of Christmas music in October, but there is nothing more peaceful and soothing. It is doing wonders for my spirit.

I just got the word that we will be transferring out of the PICU today. At any time actually. This is good and bad. Good because we will have a lot more privacy and less people in and out of our room. Bad because the friends that I have made work here in the PICU. All in all it will be good for us, perhaps one step closer to going home? I'm going to think of it as that. It will be much easier to convince them of sending us there if we are not in ICU.

Ashley will have a scope done of her bowel this afternoon. Tomorrow we will know the results of the biopsies. Perhaps from that point on we will develop some type of plan. I know that feedings are the real key to getting released so I am going to be working on them to move us in that direction. Well, I suppose I should start packing for our move.

Thank you for your prayers. Thank you for you presence. Have a wonderful day. God bless. Trish

I don't know if you can tell, but I'm really struggling right now. This place is like a foreign land and I feel as though Ash and I have been dropped off and left without a clue. I realize we have been here before and we should be all too acquainted with the place, but its different. Maybe its because we went home and it felt so good to be there. Maybe its because I feel like we have received no real answers or direction. We are here...for how long...nobody knows...indefinitely?

There is nothing normal or natural about raising your child in a hospital room. Routine, familiarity, family, peace... we have none of that here. I do not decide when she wakes up. I do not decide when she eats. I do not decide who enters her world. I do not decide who touches her. I do not decide anything. I am here, but all I do is stand and watch. It doesn't feel natural, but by now you would think I should be used to it. It feels like I am an outsider. A stranger almost. The routine is decided by someone who has never even met my baby. The caretakers are chosen by people who do not know me. I am asked, "Do you stay with her all night?" As if I am doing something wrong. Honestly, where else would a mommy be? This is my job. This is what I do. I take care, provide for, protect, comfort, look out for my children. That doesn't cease because she is sick and I have entered into this foreign land. I am her mom and where she is I am. I don't know how to do this any other way.

How frightened would you be if you were dropped off in a strange new land where the people although they mean well cause you pain? Imagine if you couldn't communicate with them. You don't speak their language or you have lost your ability to speak. The fear that would envelope you is the fear I see in my Ashley's eyes each time a new person approaches her bed. She does not understand that they are ultimately trying to help her. What does she understand? She understands that I am her constant. Her safe place. I have been with her and I will comfort her. She trusts me, because she knows I love her. I am going no where. This is what I do. I take care of my children.

To be asked if I had ever considered that my presence is disturbing our Ashley or keeping her from sleep is hurtful. It cuts deep into the heart of this mommy. It causes me to cry myself to sleep. Please put yourself in our shoes for just one moment and consider if it were your child, your baby. I guarantee you would be here too. She is frightened by your presence and not mine. She doesn't know that you are trustworthy. She doesn't understand.

A foreign land is where we now reside. A necessary but unpleasant trip. A trip that must be endured, but is not comfortable. A trip where some of the locals become treasured friends, but many are not. Deciding who is who can be tricky. My goal on this unplanned trip is to protect my daughter's health. To be used by the Father in any way He sees fit. To make a difference in my daughter's life, and to travel this road with compassion, integrity, respect, and humility. I pray that along the way we will encounter more friend than foe and that somehow we will show them the love of Christ.

As one of our nurses said just the other day (brace yourselves because it is a little blunt) "Mean people suck!" and that is how I am feeling today. Please forgive me if I offend anyone.

Your prayers for this weary traveler and her tiny companion continue to spur us on to "love and good works". If it weren't for the prayers of many I am afraid I would have said some ugly and unkind things. Ash is sleeping(even though I am in the room) and I am going to do a little more reading. Please know how much you are loved and appreciated. Trish

...must be red. I had secretly (OK, maybe not so secretly) hoped it would be pink, but she is going to great lengths to prove to me it is red. I tiptoed out of the room to take a shower this morning and when I came back she had painted herself and her nice clean bedding with red blood clots. They were the biggest I had ever seen. She was laying in an inch of blood and had torn off her ostomy bag to show me the clot she had just passed. Now I realize this is not for the faint of heart, but I almost fainted. I could feel myself getting hot and dizzy and wanting to fall to the floor. The clot was as big as my hand and very, very thick. I have no idea how it came out of her stoma, but it did. So as I am cleaning this mess and trying to determine just where all this blood came from I got a bright idea. What if this had been the problem all along? Now it is resolved and perhaps we can be on our way home? What if? Maybe she just needed some time to get rid of all that blood. Maybe the blood clot made her sick and caused her bowel to stop up and slow down. Maybe?

I decided to pose my theory during rounds and I was met with a look that said, "Are you crazy?" "No, I'm not crazy," is what I wanted to say, but instead I just told the doctor, "Maybe this will help her feel better now." He nodded and said we will just wait and see what the biopsy results from tomorrow will show. So now I find myself waiting (not too patiently I might add) for Tuesday morning rounds so I will know if this clot thing fixed all if this. At least I'm hopeful and thats better than being depressed.

The Tarheels are currently leading 3-2 in the 6th inning of a very tough game this morning. Time is expired and we need one more out to win. They won their second last night 17-6, and must win this one to continue playing today. Blake is catching and doing a great job. My mother in law is trying her best to give me the play by play. I am so thankful for cell phones! That is the only way I got to be a part of Blake's season last fall and it looks like it is happening again. Go Tarheels!

Ash is settling in for a nap and I am settling back in to my book for the day. Hope you all have a blessed day. Trish

Ash and I snuggled in and ready to spend our Saturday night in the PICU. I didn't take this picture today, but she just looked so cute in it I had to share. She is actually SNORING as I type with the help of a little Benadryl. They decided to give her some to try and keep her from ripping off her face and everything else she was after. It not only stopped her clawing, but it put her over the top and she is now sleeping. I have decided that sleep is a beautiful thing! I actually took a 2 hour, drool running, contact losing nap myself. When you are as tired as we are its not pretty. I assure you we wouldn't be accused of going by the name Sleeping Beauty.

I am still running laundry through the halls. Only one more load of pink blankets and I can call it done. Theres just something about doing this baby's laundry that makes me happy. I could fold her little jammies and things all day with a smile on my face. I think it just serves as a reminder that she is with us and for that I am grateful.

Allie's team did defeat the undefeated team today and although she didn't score the two goals she did set them up and was credited for the assists. "Thats just as important mommy, my coach told me." Yes, she is right and I am just so proud of her! The Tarheels lost their first game and they are currently tied in their second.

Living in such small confined space with no privacy can be extremely trying at times. Always having people in and out and touching your baby can also be trying. I do my very best to appreciate and get along with all those who care for our Ashley, but sometimes things get misinterpreted and things get said that aren't always correct. That makes for an uncomfortable day. I pray that my character will show itself and those that have cared enough to get to know me can stand by that as well. My dad taught me early on to always do the right thing NO MATTER WHAT and if I did that nothing anyone said about me could compete. I pray this applies in PICU situations as well. Please pray that I can be a friend and a blessing to those around me. I'm feeling a little stressed, and a lot lonely. Thank you, Lord for those nurses who choose to be my friend. I wouldn't be surviving this time without them. I love you guys!

I'm gonna snuggle up in my chair next to my baby's crib and jump into a new book. Thank you for your prayers. Days like today make me wish I could run home to those who I know love me and my Ashley. I'm sure this time is serving a purpose, but its not always easy to see what it is. Good night my friends and God bless. Trish

Sweet Ashley Kate is miserable and cranky and tired. Again she did not sleep and again she is paying the price. I wish there was something I could do for her. Her little body is making her crazy as she claws and scratches and tries to escape. We were forced to enclose her hands in socks and tape them on and then to use IV boards around her elbows in order to keep her from removing her new central line. It looks like cruelty, but it is for her safety. The next step will be restraints in order to keep her safe, but I hope it doesn't go that far.

Overall I think she looks good. She continues to require blood transfusions every couple of days and potassium bolus'. She is waiting on her blood now. She came up from the OR with a nasty scratch across her nose that she continues to claw at making it bleed. She is swollen and puffy and from the sounds of it she will be for quite a while. Her tiny, petite face and features are disappearing from us again and for this mommy's heart that is sad. I want so badly to get her back home and back to her normal routine where she sleeps all night in her crib in her nursery. These sleepless nights are taking a toll on us both. I actually slept through rounds yesterday morning. Apparently I drifted off while waiting for them to come down the hall. No one woke me up until it was over when they asked me to sign the consent form for the line placement. I hope I wasn't snoring or drooling! When I did open my eyes there were about 12 people standing around our little room staring at me. I was MORE than embarrassed and apologized to our surgeon this morning. He just laughed and said no need to apologize, but I still wonder what they must have said. From the sounds of it even if we avoid the OR we are going to be here for "weeks and weeks". I don't like that statement very much, because weeks and weeks is sounding closer to Thanksgiving and Christmas. I'm not sure if we can celebrate another Christmas here in this room. I pray we amaze them all and go home SOON.

Again its a weekend here at the PICU and that makes for long, long days. I miss Dave and the kids the most during the weekends. Dave is actually at a seminar in Dallas, Blake is headed to Texarkana to play baseball(not sure if thats is in Texas or Arkansas), and Al is playing soccer in Longview. Busy days for our family and I am sad that Ash and I can't be there with everyone. I asked Blake to "hit the ball to Omaha" and he just laughed. Al promised to try and score a goal for me and Ash but doesn't if she will be able to because their opponent is undefeated. "Until today", I told her. IF and when Ash decides to fall asleep then I am going to run the laundry race this afternoon. She is completely out of her sheets and pillow cases and we are getting low on blankets too.


Thats all I know for now. Your presence here is comforting to me and it makes my days happy to here from you all. Thank you for leaving your comments of encouraging words. I feel like I know you guys by now and it is nice to hear from my "friends"(even if you are imaginary). Anyway, have a great day and enjoy your families. Take care. Trish

... suffers long, and is kind, Love envies not... Love is not proud, Love is not easily provoked, Love thinks no evil... Love rejoices in the truth. Love bares all things. Love believes all things. Love hopes all things. Love endures all things. Love never fails.
(TAKEN FROM I CORINTHIANS 13)

Because I love Him I will not be provoked. Because I love Him I will not think evil of someone else. Because I love Him I will be long suffering. Because I love Him I will bare this. Because I love Him I will endure.

I love Ashley Kate because He loved me first. Ashley Kate will learn to love others through my example and I wish for her to be kind. To stay humble. To believe. To hope. To not fail. I am her mommy not because I deserve to be, but because He loves me and He loves her.

Thank you to each one who loves Him so much that you allow yourselves to love our little girl. Trust me when I say to you that my heart did not dwell on the ugliness, it broke for the one who spewed it. I feel strengthened by the prayers you are praying on behalf of our family. Thank you from the deepest part of my heart.

DEAR ANONYMOUS,
The Bible is not difficult to understand. It is a love story between a Father and His children. His love holds no record of wrong and it does not waiver because my sweet Ashley has a broken body. It is the spirit He created in her that He loves. Loves so much that He gave His only son to die for her. I pray you can one day know how very much He loves you. I pray you will someday know how it feels to love someone without condition. Love them with the love of Christ. Love them regardless of what the world may see or may not see. If that day ever comes for you then you will not be "disgusted" you will be changed. Praying for you tonight and saying to you that you are loved. TRISH

Ash is out of surgery and the girls are taking a much needed nap. Trish promised she will post an update after they rest.

DAVE

Ashley Kate is ready and waiting to take her outing to the OR. This is her first day wearing p.j.s(half of them at least). She also allowed me to put up her ponytail and add a bow(you know this made me smile!). Did you notice she is sitting up? Her tummy is finally small enough that she can get up off her back and sit. Even though shes not smiling I know it has to feel good to be up for the first time in more than 2 weeks. After a rough night of causing trouble she looks too sweet. I couldn't get frustrated with this face even if I tried. I just love her so much.

We will be the last ones in the OR today. I thought I would let you know so you wouldn't spend the day waiting to hear. I will post as soon as we come back up. Until then we are going to take a nap. Take care everyone. Trish

a bad dream! Unfortunately, my body tells me otherwise. The events of last night are not even describable because for most of it I just did what I had to do in my sleep. The details are not that clear. What I do know is that Ash is going need a new central line so we will be heading to the OR at some point today.

Ashley has insomnia from that nasty med I had hoped to keep her away from. Along with the insomnia she is trying to claw herself out of her own skin. Too bad for her that she has many, many things attatched to that skin she would like to claw off. The results of her side effects add up to this:

6 Ostomy changes from 12a.m to 7a.m = very raw, sore, painful skin on an already sore tummy around an already inflamed bowel.

1 self removal of a central line = 12 new scars from removing the sutures in one mighty yank, a nasty, seeping wound from the areas of skin that came off along with the sutures, a peripheral IV in her left hand OUCH!, and a new trip to the OR.

3 broken nails on mommy's hands from all the bag changes = an unkept, yucky looking mommy

2 exhausted girls on the brink of tears = a very grumpy mommy toward all those who keep coming in to poke her for blood sugars. I finally sent them out and said, "NO more. I will deal with who ever I must, but it is enough."

Add all of this up and you will get a very tired, disappointed, frustrated, wanting to go home mommy and baby. Lord, please help us to get through the rest of today because I am pretty sure we have already done some damage with our attitudes. Please give us rest and strength. Please restore Ash so that we might go back home. Please equip us to accept how ever you choose to answer these requests.


We could definitely use your prayers. I had to apologize to my nurse for being so grumpy and short with her and I am feeling the need to apologize to a few others as well. I am not receiving "visitors" very politely this morning. We just completed our 5th night of very little rest and it is catching up with us both. Take care. Trish

Rejoicing in hope, patient in tribulation, continuing...in prayer.


What beautiful words I stumbled upon tonight. I do find myself rejoicing in the hope of the progress I see she has made. I am so thankful the verse doesn't ask us to rejoice in the tribulation because I'm pretty sure I would struggle with that, but I am working on being patient during this time. Continuing in prayer. I truly desire to continue in prayer. Its a funny thing with me. Not all fancy words or heads bowed. More like an ongoing conversation with the Father that doesn't seem to have a beginning or an end. Even when things are going well in our lives I am striving to just continue on with Him in prayer.

Its been a long day, but a good day. I miss Dave so much more on the days that he leaves for home. There is just an empty feeling inside without him here with us. Thankfully the Lord sent friends by to keep me company. During our time in Omaha I made some really wonderful friends. Some were transplant families, some nurses, some families of the nurses, and others who just some how stumbled across Ashely's story and reached out to a tired mommy and her baby. How blessed I feel to know each of these. I know without a doubt that our days here were orchestrated and that we were led to this place. Why we are back now? I'm still searching for that, but I am open to the knowledge and possibility that He just isn't finished working in my life and that there are more relationships in store for me here in Nebraska. I'm trying to be willing to be used by Him.

Ash has fallen asleep and even though she wakes with that nasty cough periodically she is able to be soothed back to sleep. My hope is for a nice peaceful rest for both of us tonight. We are sooo tired. Her tummy albeit still quite large is getting softer by the day. Her bowel continues pouring fluids telling us that the infection and rejection continues to work its way through her system. She is putting out between 1500 and 1800 ccs of fluid. Her allowed amount in a 24 hour period is 400ccs. We have a long ways to go, but I am hopeful it will continue to heal and recover. The most beautiful thing that has happened to us today is the function of her kidneys. I am having the privilege of changing big heavy diapers weighing as much as 60mls. What an amazing difference. We were having 24hour periods with only 8-12mls of urine. So scary!

I did not get any pics posted tonight. I am just so very tired, but I promise I will do better sharing with you tomorrow. As always I appreciate each of you so much and I am honored to share our baby gherkin and her story with you. You have become such part of her story and our lives are forever changed because of walking this journey with you. I can't say thank you enough for all you do. I am going to go and lay down for awhile since Ash is resting. Good night my friends and may God bless you and your families. Trish

I think that is a beautiful word! Yesterday's CT scan results are in and the word they used to describe the bowel was RESOLVING. That means it is getting better. Yeah, Ash!!!

There was absolutely no mention of surgery during rounds this morning and I wasn't about to bring it up. If we could avoid entering that sick bowel then we could potentially be home weeks to months sooner. I pray we do not have to go in there. They were thinking about scoping the bowel tomorrow, but changed their minds. We are going to wait until Monday to give her 3 more days to heal. I think that is a good idea. Overall I feel as though things are moving in the right direction.

I asked about feeding her. They laughed. Not going to happen anytime soon. They need to have clear biopsy results before beginning that phase. It doesn't hurt to ask. Her bowel continues stooling out and as long as it is doing that we can assume it is still very sick, but I am concentrating on the word RESOLVING. Anyway you say it sound pretty positive to me.

More good news? Ashley's kidneys kept up. She is required to put out 1ml per kilo per hour. She is producing 1.1! She made it and I am thrilled! Thank you for praying specifically for those kidneys.

I spent some time rocking this sweet baby this morning and we both eventually drifted off to sleep. I think we are feeling much better this afternoon. I even stretched one of her onesies to its absolute max and got it to go around her. The fact that it went over her belly tells us she is shrinking. Slowly, but still shrinking.

I just wanted to share the encouraging parts of our day with you and thank you once again for praying. I truly appreciate all the time you spend here with us. Take care and have a great day. Trish

By the way:

I want to say thanks to Brenda for stopping by and for all the goodies. You blessed me today and I really enjoyed meeting you.

M, the only laundry available is the one in the Lied and finding an unlocked door is always tricky. I sure wish they had a family laundry available.

I will try and post a couple of pics of our "home away from home" tonight.

Can you believe two weeks ago today we got on the med flight and headed back to Omaha? In some ways I am astonished that it has only been two weeks(it seems like we have been here forever) and in other ways I can't believe it has already been two weeks. Two weeks ago last night I left the hospital while Ash sat with Grandma and went to dinner with Dave and the kids. Then I left Dave to stay with Ash so I could go home and tuck Blake and Al to bed. I remember laying next to them on their beds and listening to them talk and talk and talk. I had been at the hospital with Ashley Kate for 3 nights and had been missing our night time routine. Looking back I wish I had known what the next morning had in store for us because I would have done things differently. I might have asked the kids if they wanted to sleep in our room just so I could listen to them breathe all night long. I might gone back into their rooms a few more times before retiring to mine. I might stayed up late on a school night and played a game or watched a movie. I know I would have told them an extra time just how much I loved them. I just miss them so much and I think it is especially hard on all of us because we know how long it was last time. I can't explain this for any other reason except to say that I woke this morning feeling like we could still go home any day. Call me naive, but I just pray we aren't here much longer.

Home away from home? I try my best to make our room feel like home. I sectioned it off in my mind into different areas. I have an office in the corner. It consists of a rolling hospital table that holds my computer, my bible, my books, and phone, and cameras. I have taped all the photos of the kids from my wallet on the wall so I can see their faces as I type or study. The next area is my living/bedroom. It consists of my favorite blue recliner that serves dual purposes. I keep my blanket folded across the back for those times that I feel like resting which in turn makes the area my bedroom. When I'm not reclined for sleeping then I am rocking my Ashley Kate or reading or both. Then it becomes our living room. Ash's crib is right in the center of the room and like always it is made up with her sheets, her blankets and her pillows. I catch a lot of grief about this from some of the doctors, but I think it is important to her healing that she be surrounded by familiar things. Her things make her feel secure in a very scary situation. We do have a bathroom area, but I am not allowed to make use of it. It is only for emptying Ash's output. Our next area is what I call the kitchen. It has a sink, a counter top for holding Ash's supplies, and some cabinets. I don't use any of them for our personal things, but I still refer to it as the kitchen area mainly because of the sink. I keep the room as tidy as possible while living in such a small place. I always have an air freshener plugged in so it smells delicious(Thanks Heather for remembering) and I keep soft music playing under Ashley's crib just like we do in her nursery. All of this may sound very silly to some, but I am making the best out of a tough situation the only way I know how. Dave tried to throw a kink in my system by taking the computer out of the office and into the living/bedroom area. When I explained my "home away from home" concept to him he just rolled his eyes, went back to the office with the computer and smiled. I think he understood or at least he tried to. I'm so glad He loves me enough to look past all my silly ways.

Ash had 20 minutes of sleep last night. Thats it. That also means that Dave and I had ...20 minutes and he had to be up at 4 and has to work all day. At least I get to go to my "bedroom" and nap. Some days are crazy in this life of ours, but even still we are more than blessed. I am so thankful to have this beautiful baby to love and to have 2 of the greatest kids in the world missing me back home. We will all get through this time and when we do our time together will be all the sweeter. Still blessed. Thats what we are.

P.S.

Daisy, we LOVE our smiley face balloons. Thank you so much for thinking of us. Every time we look at them we SMILE really big and think of you. We just love you two!

This daddy sure does love this pickle! I could sit and watch them together forever. He leaves us at 4 tomorrow morning and we will both miss him so much. Today he spent his time rocking, rubbing, and relaxing with our Ashley Kate. He climbed into her crib and rubbed until his fingers went numb. I love the way he loves her. I love the way he loves them all.

My heart is so sad. Blake and Allie were both crying on the phone tonight. They are missing us terribly and they have been so strong for so long. My heart broke as I listened to them turn on each other and although I tried to help them repair the hurt feelings its just not the same when mom is 700 miles away. I wish we could all be at home together. Allie is so emotional and Blake is trying so hard with her, but like he said,"I'm sad too, Mom." He may be 12, but he is still a kid and their hearts are hurting. I pray Ashley Kate will recover soon.

I wonder how there doing it? I don't think I could hold myself together as much as they do. Thankfully they have wonderful grandparents who are giving so much time and energy filling in for me while I'm away. We try so hard to keep life as normal as possible for the kids. We know that our sweet Ashley will always be sick and there will always be periods of time that require her to be hospitalized. Dave and I firmly believe that Blake and Al should not have to give up their talents, their activities, their friends, and their normalcy. They love Ash and I know they would do anything for her, but that doesn't require them to have to give everything up. Blake will be playing in the Regional soccer tournament tomorrow and more than likely his team will play in the championship game. How I wish I could be there to cheer him on. The Tarheels will then travel to Texarkana for a baseball tournament this weekend. Allie will play soccer on Saturday and has promised to kick another goal for me. Ash is sick and we are away, but life goes on at home. I miss my kids so very much.

Ash looks pretty good tonight. She is a little fussy and irritable because of her big tummy, but overall I think its been a good day. Her kidneys continue to struggle and we continue to push albumin, plasma, blood, platelets, and replacement fluids trying to keep up with the fluids she is losing. We need her kidneys to wake up and decide to do their job again and do it well. She is barely hanging on at the lower end of the spectrum(and it doesn't make our team very happy).
She had low fevers a few times today, but currently she does not. We went back to CT today to see if anything had changed in the areas everyone is so concerned about, but we have not heard the results. Its a long road back and if we do indeed have surgery then the road becomes even longer.

Tonight I'll be lifting up my children in prayer. Each of them hurt even though some hurts are physical and some are not. I just want to be their mom and take all the heartaches away. I would love to climb up next to them on their beds and rub their feet until they grew tired and drift off to sleep. Thats exactly what I'm going to do on our first night back home. I hope they know how very much they are loved as they lay there tonight.

Thank you for your prayers for our family. I thank God for each of you and pray He blesses your homes. I look forward to meeting with this group of believers on the other side and seeing the ones He has called to stand with us. I love you guys. Trish

This morning I think we are all a little tired and our baby is a little grumpy. Ashley Kate cried for most of the night and that is extremely rare for her. She didn't sleep for more than an hour at a time. This morning she woke up feeling yucky and her tummy is very hard and swollen again. It continues to empty into her ostomy and for that we are thankful. Her rash has come back on her face and arms causing them to peel and hold fever. Overall she just feels bad and isn't very happy.


The doctor in rounds this morning said, "Unfortunately this just takes a really, really long time. We wait for the bowel to recover and it won't happen quickly." It sounds like we could be here a while and that makes my heart hurt. I miss Blake and Allison so very much and we were all looking forward to spending the holiday seasons together. Adjusting to life in the PICU again isn't easy, but I am thankful for the nurses who have truly become my friends. They make all the difference in the world.

Dave will be leaving tonight or possibly early in the morning. Then it will just be me and Ash again. He will not return for quite a while unless they once again think it is an emergent situation. I have no idea when I will see the kids again. My hope would be that we can avoid the "really, really long time" and just amaze everyone with a quick recovery. That is still my hope. I am going to remain as positive as I can, but there are days when the separation and Ash's struggles just bring me to the breaking point where all I can do is cry. Thankfully I don't stay that way for long. The blessings in our lives far outweigh the hurts or disappointments so I have to concentrate on those.

This video was taken last night and we wanted to share it with you. Unfortunately she doesn't look quite as good today, but you can get an idea of the grumpy attitude she has brought along with her to Omaha. You just gotta love her through it. We are still waiting for the day our sweet Ashley's smile returns to her little face.

... so blessed... so thankful... so encouraged... so optimistic... so tired. It has been a long day. To be honest it has been a long 16 days of hospital stays. It will get longer still, but if we just wake up each day and take it a moment at a time I think we will make it. Dave has gone to find an open couch to sleep on. Ash is awake and fussing in her crib. I am getting ready to rub those tiny feet before retiring to my "favorite" chair to rest. Again I thank you so much for your presence on Ashley's story. We rest tonight knowing that the Father is listening and many are praying.

Rounds are now finished and it looks as though we have been able to dodge the OR for the moment. Not forever, but for now. Ashley's doctor examined her, looked over her labs, and then looked at us with her hands held up in the air as if to say, "I don't know what happened." Then she actually did say, "You know why she's doing better don't you? Its because I told you to call her daddy." Next she told Dave, "I wouldn't have asked you to come if I didn't think we were going to need you to be here. She looked bad enough that I was very concerned." I just smiled and reassured her that we appreciate her and she had NO reason to apologize. We would never forgive ourselves if he was not here and we lost her. In my heart I know she is doing a little better because of the many, many, many prayers that are being prayed over her. Thank you so much.

Ashley will have to go into the OR, but at this point the longer we can wait and allow some of this infection to clear the better chance we will have. Our surgeon said if it becomes emergent then by all means we will take her in and do the best we can, but one of the major concerns about opening Ash at this point is whether or not they would be able to tell between injured areas that need to be removed of infected areas that just need time to heal. Of course the other danger is the risk of spreading the infection. If we can hold off then we will and for today we get to hold off. Knowing that Ashley is going to lose a section of her bowel is very, very frightening to us. We have walked this road with our sweet Ashely before and our prayer will be that enough of her intestine has survived to still be functional. We will not know that for many, many weeks to come.

Trying to figure out if Dave should leave is another difficult area for us. Obviously he dropped his responsibilities yesterday and ran. He needs to work in our office and take care of our patients. He needs to earn an income for our family. He needs to be there for our children. What do we do? Ash is still very sick and she and I will more than likely be here in the PICU for a while. Is it safe for him to leave today? We have no idea. We have many decisions to be making and are looking for direction.

Your kind words, encouragements, support and prayers are so very appreciated. I could never say thank you enough for loving the Lord so much that you love our baby.

The other night I was reading in Psalms and came across a chapter that after every verse it would be followed by, "His mercy endures forever." No matter what the psalmist would say it always ended with these words, "His mercy endures forever." I began to think of what we were up against I would say to my self, "Her tummy hurts, but His mercy endures forever. Her bowel is sick, but His mercy endures forever. My baby is scared, but His mercy endures forever." This way my prayer that night. Over and over again I would say about my sweet Ashley Kate that, "His mercy endures forever", and I asked God to have mercy on her.

At some point through the night Ashley's bowel began to POUR out fluid. It opened up and has not stopped. The fluids that have been sitting inside of it for days are coming out. His mercy endures forever. Her abdomen was stretched to the max last night, but his morning it is smaller. His mercy endures forever. She is till distended, but as the fluids come out of her it gets smaller and smaller. His mercy endures forever. My heart is encouraged as I read of the people who woke throughout the night to pray for my baby. As you prayed, He worked. This morning the tears sting my eyes as I see His hands holding my baby. Please don't stop praying. He is listening and working and let me say that for my Ashley Kate, "His mercy endures forever!!!"

She is still very sick and we do not yet know about her surgery, but I can't contain my excitement and although they warned me again, "She is going to get worse" I can't help but smile knowing that God may have others plans.


To my son Blake I would like to say:

Happy 12th Birthday. You AMAZE me. How honored I am to love you. Your strength, your character, your kindness, your dedication, your drive, your dreams, your unselfish nature. Blake, I could go on and on forever about the many parts of you that inspire me to wake up each day and be a better mom. What I am saying is that I have learned and grown with you over the past 12 years and because of that I am who I am today. You make being a mom easy, and you make my heart smile. I am so proud to be YOUR mom. Of all the 12 year old kids in all the world if they told me I could pick one YOU KNOW I WOULD CHOOSE YOU.

Together we will achieve your dreams. I promise to support you in whatever it is the Lord leads you to do. Dad and I are so very proud of the young man you have become and I look forward to watching you grow up. Thanks for being more than my son. You are an amazing child. An incredible role model and big brother to your baby sisters. Thank you for loving them so much that you understand why we are not with you today. I can't wait to see you again. Love, Mom



From this to this in a few short years. I love you Blake and I am the proudest mom out there.



"For I know the plans I have for you, saith the Lord. Plans to prosper you..."

I have had many hours to be alone with my thoughts the last two days. I keep reminding myself of Ashley's story. Not just the journal portions of her story, but the entire story of my sweet girl from her first day until today. Last night I walked through the days and reminded myself of ALL the amazing works of God. I never realized His intimate work in my life until I knew of our Ashley. The details are many, the relaying of them all would literally take hours, the knowing He was there each step of the way brings comfort to us. How blessed I am to have the opportunity to store them in my heart and "ponder" them on days like today. Why He chose me to be her mommy I will never know, but oh how grateful I am. This little girl has changed my life, my heart, and my faith for ever. I love her and every moment I am allowed to spend with her.

At this moment Ash is in the crib struggling against the pressures in her belly, but still breathing beautifully. Her abdomen is enormous and she has put on over six pounds because of the swelling in her bowel. It is unbelievable to us to see her body being stretched to this capacity. Her skin is so taught that it has become shiny and glossy. I honestly have no idea how she is able to bare the pressure and the weight that is on her. She has areas of her body that is covered in a red rash and fever. Her right eye remains swollen shut and she is trying her best to peek out of it. She can not move her body because of the size of her belly, but she does request foot massages from whoever is standing close by. Everyone knows that when she asks you must comply. I just love the nurses who respond to her request. It makes my heart smile. If rubbing her little feet makes her feel a little better then I will willingly stand there all night. She is trying to rest and for this we are grateful. If you touch her, move her blanket, or bump into her crib she cries out. She is so tired.

Knowing her history and seeing the condition her body is in I am amazed that she remains so strong and so stable. God is definitely working in her body. She has multiple things going on inside of her. Rejection, viral infection, bacterial infection and yet she remains strong. Her bowel is so very injured and yet she remains strong. This is God and His work. I know He hears the many prayers that the body of believers are surrounding her with. Even though we are facing some uncertain issues I have a confidence, a peace, an acceptance. The upcoming days will be crucial and we are told they will be difficult. I can not tell you what is going to take place. If I think too much about the impending operation and the re-sectioning of her bowel I begin to get nauseated. I have to focus on what is good and what He has already done. I can't allow myself to become overwhelmed right now. Perhaps tomorrow will bring healing or at least answers.

We are mentally tired and emotionally drained. Our day began with some frightening possibilities , but as it comes to an end we are feeling at rest with where she is at this moment. Her future is uncertain, but honestly yours and mine is too. None of us have been promised our next breath. I am just grateful to know that He holds us in His hands and close to His heart. He loves my baby and I know that.

I made it. I am going to catch up with the girls and we will update a bit later.

DAVE

Ash is sleeping this day away the best that she can. Her little body is flush with fever and her tiny legs shake. She occasionally raises those tiny feet in the air for me to rub them. She is a lot more uncomfortable today in regards to movement. We are not able to move her position without her yelling. As long as we don't touch her body then she is resting. Nothing much has happened. She is sick and miserable. Everyone we have talked to seems to agree that she will have to be operated on at some point, but no one knows when to do it. There will be a new doctor on service in the morning and it will be interesting to hear what he thinks about where she is. For now we are to "be prepared" to go if her vitals change, but she is still holding her own. I am so proud of her! She is not being given anything for pain control at this time although they have written for morphine if we feel she needs it. The problem with giving it to her is that it is only going to cause more problems inside the bowel. Anytime you take a narcotic it slows down the function of the gut, but hers isn't working at this point anyway so I wonder if it would hurt? I have debated on posting pictures of her at this time, but for now I will wait and let Dave decide. She is large. Much larger than in the video we shared earlier. She doesn't look like herself right now and it is a little disturbing. Let us think about it some more.

I have peace for the moment that we will get through tonight without going into surgery. I can't explain why I feel this way. There have been some extremely tense moments in our room today as I held her feet in my hands and cried as though I would never stop, and then as quickly as I was overcome with fear I felt a wave of peace come over me and I knew we were ok. As long as Ash does not crash then we have held it off for one more day. The more days we can put off an operation the better chance I think we will have during recovery.

Dave has not arrived yet. He had to hit 4 different cities to make the trip. I expect him in the next couple of hours. My hope and prayer is that Ash will not need to have surgery at all, but even though I am hopeful I realize that I am being naive.

Your prayers...I don't know what to say. My heart is at peace knowing that she is so loved and knowing that you are carrying her to the Father for us. Thank you, thank you, thank you. So sorry for the late update. It has been a crazy out of control day. Your patience is appreciated.

There is much concern about Ash this morning. I am not for sure, but the surgeons are trying to decide what is our safest option. They are pretty sure they will have to remove a section of her bowel, but how much and when they should go in is uncertain. They have asked me to call Dave and have him come back because no one knows how this will go. "If he wants to be here, then he needs to get here." That means it could end in a bad way. It's never good to have them tell me to call him.

I am scared and shocked. So many worries and responsibilities overwhelm us at times like this, but ultimately Ashley's life is our top priority. The rest will work itself out.

If they take her into surgery they will re-open her from top to bottom. Remove the portions of the bowel that have suffered injury and re-sect the remainder. Essentially it is like NEC, but not exactly. There are no assurances that she will make it out of surgery safely or that she will not become septic after they go in and move things around. It will be very, very dangerous, but is waiting more dangerous? They are struggling with the decision. We could go in to the OR at any moment or not go at all today. They just asked me to be ready.

What encourages me the most about Ash's current condition is that she is on no support. She is bigger and stronger than she was last year. I think she has a better chance at surviving this episode than she did going into transplant. Her stats are strong and stable at this time, but as the injury and infection begins to spread they tell me her blood pressures, heart rate, and oxygen levels will begin to "freak" out. I know what they mean because I have seen it happen in a matter of minutes with our Ashley before. She has begun to spike a temp this morning and it is still climbing. She also needed another transfusion so something is wrong somewhere. Yet, still I am encouraged at this moment. Perhaps it is just the prayers that are carrying me to this place.

Dave is scrambling to get here. It takes a lot to make it happen and the earliest I could see him is 7 tonight or possibly 11. Please pray for his peace of mind. He is the leader of our home and the responsibilities fall on his shoulders. Days like today just make those responsibilities seem a little heavier to carry. I can't even express how I feel inside concerning Blake and Al at this moment. Just no that they weigh very heavy on my heart.

Still it could turn around at any moment and she could sit up and smile and tell me with those amazing eyes to take her home. That is what I long for. Trish

I realize this is not the happiest clip of video you will ever watch, but I thought it might help put into perspective the descriptions of what I share. You can see that our tiny, petite baby has slipped away and she is growing more and more distended by the day. The large red mass you see on her side is actually her ilieostomy that I speak about. It is at least 5 times its normal size which tells us that her bowel is angry, swollen and inflamed. She struggles with the pressure and grunts some with her discomfort, but by the end of the clip she shows us a little of that determination and spunk that says, "I'm still me even if you don't recognize me." I love this baby girl, even on her rough days. Thank you for praying of her. She is holding her own around here.

What a long day! Nothing much happened outside of rounds this morning, but it was an awful lot of information for me to sort out and absorb. Tonight I feel like she can do this. She has been around this block a couple of times and she's pretty tough. My sweet Ashley Kate doesn't know how to do anything but survive and overcome. I just think He's got a plan.

She is basically the same tonight as she has been all day. Uncomfortable with the worst stomach ache you could ever imagine. She continues to stretch to dimensions I never knew were possible. It looks so painful and so frightening, but in the midst of her discomfort she can still make me smile. Ash has been holding her little feet in the air wanting me to massage them. She doesn't make a sound. I just look over there and see a foot sticking up and thats the cue. As soon as I start she closes her eyes and it seems to relax her just a little. I love this silly girl. One day last week she had her daddy on one side and me on the other just rubbing away.

After spending some time visiting with one of the doctors this evening the goal is to wait. We are all waiting for Ashley's body to declare which path it is going to take. I am believing that it is possible she will just wake up one day and turn this thing around. If she can hang on long enough without becoming too exhausted by the process then I think we have a chance. There is really nothing that can be done until her body shows us that she needs more support. That support will more than likely come from the vent at the point that the infection spread and she reaches her limit, but it doesn't have to happen that way. I am encouraged that her blood pressures have been solid. I am encouraged that her heart rate is holding its own. I am encouraged that although she is working hard to breathe against the pressures building inside her abdomen she still sats at a 100%. I am encouraged that she is not maintaing a high temperature. I am overall encouraged by the possibility that it may not get as bad as they say it can. My fear or worry or tears will not change the path that this is going to go down. Thats not to say that I haven't had all three of those at some point today. More than anything I just wish I could relieve her of the discomfort she is in. There are no band aids big enough for this boo boo and realizing that I am helpless and can offer her nothing is tough.

Ashley's eyes like always tell the story. In her eyes you can usually see a twinkle. It may be a twinkle that hints of an ornery streak just waiting for an opportunity to shine or it may be that twinkle that shines with absolute joy and happiness. No matter how she feels I can always read it in her eyes. Tonight her eyes tell me just how tired she is and how unsure she is of where we are. They ask me for help that I can not give and they wait for me to fix "this".

I really don't know how this will all play out, but I have decided to think positive and pray that she has the strength to do whatever she has to do. I am so proud of her. Thank you for loving our pickle. Good night. Trish