Ashley's Story

She will leave fingerprints all over your heart

12/31/2008

Putting an End


to what has proven to be one of the hardest and yet one of the best years of her life. Its time to let this year go and all the struggles, heart aches, and hurts that it included for her and for us. Still I want to hold close to my heart the triumphs that came out it, the lessons that were learned from it, and the knowledge of His presence that we were reminded of during it.

We started this year with such hope for our baby gherkin. We were so ready to put an end to her struggle and see just how far she could go, how much she could learn, and all she would accomplish. It didn't take long for us to be reminded once again of her frailty as we faced the prospect of losing her early on in the year. She hung on and fought one of the toughest fights of her little life and once again proved to us that God was not quite finished using her to impact her little corner of the world.

Once home she took off. All the things we had hoped we would see from her began to sprout as her strength renewed and she began to grow. We celebrated much this year. We saw such progress in her development. We found ourselves encouraged that this could actually be the year for her to learn to crawl, to stand, to walk. How excited we were by her accomplishments. What seemed small to some was so big to us. I'll never forget the night we first saw her scoot. It was a mere 2 inches, but had you been present to hear the cheers and celebration inside of our home that night you would have thought it were 2 miles. Each of us had such high hopes. Blake and Allie spent their summer working with her, encouraging her, and cheering her on. We surely believed this would be the year.

It proved not to actually happen for her. Once she became sick in early October she lost most if not all that she had learned and accomplished. As disappointing as it has been to see her decline in those areas she had worked so hard in we still celebrate the fact that she is battling back once again. She is still with us. Living, breathing, playing, laughing.

In the end, as I look back over this year what truly matters to us is what has always mattered where Ashley Kate is concerned. Dave and I prayed for two things for this child. We asked God to allow her to be happy. We asked God that she have the ability to give and receive love. That was our hearts desire. He has answered those two prayers. She lives life with a joy that only He could have given, and she loves. Oh my goodness does she ever love us back. In her eyes, her smile, her touches, her hugs, her "xmo's". She knows what it is to feel love and she knows how to return that love back to us. If she never walks, never talks, never does any thing other than what she does now we will still say that "God is good". For He truly is. He has created this amazing child and He has given her to us to love and to be loved back by her. When I look back over 2008 what shines the brightest is the smile on her face, the twinkle in her eyes, and the giggle from her heart.

Honestly, it has been a blessed year. So here's to 2009. May she learn and grow and love and accomplish all that He has in store for her. In the end nothing else will matter. My prayer for my child tonight is that He make her into exactly what He desires for her to be, and that He place inside of my heart an acceptance of that no matter what it is or isn't.

Happy New Year from our hospital room in Omaha, Nebraska. May the new year return us to our home and reunite the 5 of us once again. Goodnight and God bless you. Trish

Out of order

I just finished a post that I started earlier in the day and now they are posting out of order. Sorry for the confusion. Be sure and look back to see how good she looked and how happy she was on the second day of our trip. Take Care. Trish

At the end of the Day

By the end of Christmas Day we had soaked up as much of the Magic as we possibly could. I can't even describe how very happy we were. It was supposed to be their busiest day of the year with the most crowds. Everything I had read told about how miserable the crowds would be, but I didn't even notice. Honestly, we were just soooo happy we didn't even notice. I'm not sure if we were so happy it made us stupid or if the little things like that don't really get to us anymore. Either way it was an amazing experience to be their with our children and see how Blake and Allison's excitement grew and grew as they had the opportunity to show Ash more and more and more. As a parent I can't think of anything more satisfying than to see your children express genuine love and appreciation for the each other. What a Christmas!



Ashley Kate's very favorite thing of this entire day was the Spectro Magic Parade. It absolutely captivated her. She loved it so much and I couldn't help but love it because of her face. It was too dark to get a picture, but we did video her reaction and it was priceless! Each and every float and character was covered in lights. The music was fun and whimsical and everything was just so perfect. Ash couldn't take her eyes off all that paraded in front of her.


It was during this parade that my son and I sat on each side of Ashley Kate and had a heart to heart. He sobbed in the dark over her broken body and all that he just doesn't understand. I could not help but cry along with him because if I don't get it how can I expect him and Allie to get it? There is no good explanation for the way her life is. There is no explanation for why she hurts so much and has to fight so hard. All I could do was assure him that I knew God had a plan to use her in this world and even though I don't get why this is the way He has chosen to accomplish it that I still trust Him and that he needed to also. Our conversation ended with this statement from him, "Mom, she's just so happy now. I want her to stay that way. I don't want her to be sick anymore." Something about watching our tiny baby girl have the time of her life brought him to tears. I don't know what it was that triggered it all, but I am grateful to have been there with him when it happened. 3 long years of hurt, misunderstanding, stress, and frustration. It is a very heavy burden those kids of ours are carrying.


We ended our day with a fireworks show and photo in front of the biggest Christmas tree I have ever seen. All three of our children. Together. On Christmas Day. God is really, really good!

She was just sooo Happy!



Each morning Ashley Kate began our day by looking over the map of the park and pointing out what she knew. She recognized and signed every tree, bush, body of water and color on those silly things. She would spend the bus rides pointing and signing and pointing and signing which obviously brought attention from onlookers, but we adjusted and realized how cute it must be to see this tiny girl communicate with us by sign.




Day 2 brought us to Hollywood Studios. We had such a good time. Ash was having a great day and the smiles on her face on this day were some of the best we had seen from her in a very, very long time. She was just soooo happy! This next series of photos shows her mood on this day. They were just too cute to choose only one, so I'm sharing a few. More than anything I love the way she would point to something and then look at us like,




"why aren't you getting that for me?" It's like she truly believes her daddy can do anything. Like pull birds out of the sky, convince Disney Characters to come over and be her personal playmates, etc. etc. If she saw something she liked then she asked for it. It was so, so cute!



What I wouldn't do to put a smile on this child's face! It melts my heart when I see her feeling good, living life, being a little girl, and so, so happy. I love her and I couldn't trade the time we spent with her in Florida for anything. Even if it had only been one day it would have been worth it to see her eyes sparkling and shining the way the did. God blessed us with not one day, but 2 and 1/2. I can't complain. It was so much more than I thought we were going to have with her.


Ashley Kate's favorite ride on this day was the Toy Story Midway Mania. She loved the vibrant colors and giant toys that made up this attraction. It was so easy for her to get on and off of this ride in her chair that it made it one of our favorites also. The kids(all "3" of them) loved playing the midway game and trying to outscore each other, but most of all they loved seeing her enjoy this so, so much. It quickly became a favorite for all of us.





This was the face I saw as soon as I unloaded her chair from the ride. I think its easy to see that she enjoyed it and had a really good time.



Dinner just arrived some I'm going to take a little break. I'll pick back up later on. Hope your enjoying New Year's Eve. Ash and I are going to kick back and watch a movie and eat a little popcorn. Doing our best to make the most out of it. I sure wish we were back home with Dave and the kids so we could celebrate. Talk to ya'll later. Trish

12/30/2008

A Wish Your Heart Makes

Dreams do come true. They may not always be exactly what you thought you were dreaming of, but it does happen. At least for us it did. I dreamt of Ashley Kate for years. I loved her long before she was conceived. For so long I had pictured this baby that would be in our arms, and then once she was I realized that she wasn't exactly what I had been dreaming of. She was so much MORE. More than I could have ever wished for. More than I had asked for.

Our trip to the "castle" began as a dream in the heart of Allison Brooke. Since Ash was born she has dreamed of taking her to the castle. I wasn't sure if we would ever really take her and then one day this fall we decided we wanted to have no regrets. We planned our trip, paid for it, and then began to count down the days. When she became sick the first week of October I thought the dream had ended. With a broken heart I kind of gave up on the dream. As we peeked into our stockings Christmas morning I realized that Dave had not given it up. He had chosen a gift for Ash and myself that told me he believed all along that she would make it there. Our princess would go to the castle we had all dreamed of taking her to. I am now wearing a tiny silver tiara on a chain around my neck as a reminder that dreams really do come true.



For most of the trip Ashley Kate sat wide eyed in amazement of all that she saw and heard. The park was covered in beautiful holiday decorations and lights and you could hear Christmas carols playing along main street. It was the perfect time to take her there.



After lunch and her nap we took her on her favorite ride of the entire trip. The many adventure of Winnie the Pooh. She loved this ride and we loved watching her on it. Her eyes were busy scanning from side to side as we rode through the scenes of the story book. I think Dave's favorite part of this vacation was seeing Ash be a normal kid and ride the rides. A kid at Disney World riding rides, watching parades, and having photos taken with characters. It felt so good to have her out there during such a normal family activity.



This was the face we saw once we got off the ride. She was one happy girl traveling through the pages of that giant story book!

When it came down to actually meeting the characters face to face her smiles become a little less enthusiastic. It was one thing to marvel at them in the parades and shows from a safe distance, but sit her next to a giant mouse and ask her to smile was going a little too far. I took the pictures anyway because I wanted to have them to share with her one day, but I warn you she looks a little worried in most of them. She ended up meeting Mickey and Minnie(twice. Once early in the day and again at dinner that night in the Wilderness Lodge.), Goofy, and Scrooge McDuck. We didn't wait in any long lines with her for her safety and also because I knew that we had a Princess Storybook dinner scheduled for Monday evening where I would have the opportunity to have pictures made with them all. I'm kicking myself now because I had no idea we would no longer be there to make it to that dinner. So she has NO other character pictures and NO pictures with the princesses. I am really disappointed about that part of our trip.




She just didn't trust that mouse! He was so great with her though. He didn't push. Once he realized how unsure she was he stepped back and got down on her level so she could see he wasn't going to touch her. She has no idea how close Minnie actually was to her because she didn't take her eyes off of Mickey.




Their second meeting went a little better. By that evening she had adjusted to visiting with giant animals on a more personal basis. The photos of her with Goofy on our last day there with her are the best of all of them. She gave him "five" and has the cutest look on her face as she stares up at him.

Christmas Day at the Magic Kingdom was really a dream come true. The feeling was absolute magic. The lights on the castle were the one of the most beautiful sights I have ever seen. Ashley loved watching them change colors. It was so pretty.




After dinner Dave and Blake took Ash back to our room and Allison Brooke and I headed back to the Magic Kingdom. We just weren't ready for the day to end. How grateful I am for making that decision tonight as I sit 700 miles away from that beautiful little girl. I wouldn't trade those memories for anything. We did some window shopping along main street as the holiday music played. We rode the tea cups together and giggled out how sick I got once we were off of them. We laughed and ran through the streets from ride to ride like we were both little kids. We watched the show on the castle stage together and sang along. That night as the park was closing we made our way down main street and out of no where the snow began to fall. We walked hand in hand, smiles wide on our faces and our hearts, and she said to me, "Mommy, dreams still come true don't they." I nodded my head in agreement and soaked up the sights of all that surrounded us. It was a perfect end to a perfect day. I am so grateful. So very grateful.

A little bit of Magic

I'm going to share just a little piece of the magic that our family was blessed to experience this Christmas holiday as we made our escape from real life and stepped into a fairytale. I was truly healing to each and every one of us as we enjoyed playing together for those few days. I will never forget our days spent together at the "castle" and all that made her little eyes sparkle. The funny thing is that when her eyes were sparkling you could see it spread to each of ours as we enjoyed seeing the "world" through her eyes.

We arrived on Christmas Eve and had the privilege of listening to the Christmas story being read by none other than Stephen Curtis Chapman at the candlelight processional at Epcot. It was an incredible experience that sent chills up and down my spine as I sat as still as I could and soaked in the beautiful words of His story and the music of the choirs. As I looked to my left and then to my right my eyes could no longer hold the tears that fell. On my left sat the tiniest, most beautiful pickle. To my right sat our gorgeous Allison Brooke, then their incredible big brother and finally the man that keeps us all going on the days that we think we can no longer do what we have been called to do. The gratitude that welled up in my soul during those moments cannot be described. It was an amazing way to spend Christmas Eve. All together. Finally.




After waking early and peeking into our stockings we spent Christmas Day at the Magic Kingdom for none other than our sweet Ashley. It is basically designed to make the eyes of little ones shine and it did not disappointment. There were a few things that I wanted to be sure and see her experience and then we concentrated on allowing the "3" big kids to do each and everything their hearts desired. The one and only thing I wanted to do was sit back and enjoy watching. My heart could not have been happier. The trip alone was more than I imagined could happen for her just a few weeks ago and so having her with us was the biggest gift I have ever received.



Our first stop for Ashley Kate was the Dumbo ride. This was only one of the two times we transferred her out of her chair the entire time we were there. I quickly learned that her chair was her safe place and it not only comforted her it also protected her tiny body. It was difficult at first for Blake and Allison to adjust to the handicap tag that was placed on her chair, to the wheel chair lifts on the bus, and to the over all looks that came our way as we managed pumps, tubes, masks, meds, etc., but it didn't take long for them to see that this is the way life just happens to be for her at this time and that it doesn't change who she is to us. They were so very protective of her and handled themselves beautifully with others curiosity. They are so grown up and so amazing.


Ashley Kate rode the Dumbo ride and then Cinderella's Carousel(which by the way she hated! I was so shocked, and then figured out she was remembering her riding therapy! She did not love the carousel horse and I have the pictures to prove it, but I don't want you to see her crying. This trip was supposed to be fun. Ha, ha.)




The parades were definitely one of her very favorite things and I just knew they would be. The music, the dancing, the bright colors were all very captivating to her. Dave and Blake did not love Mickey's Once Upon a Christmas Parade. We were on the verge of being trampled as those behind us continued to push and push as each person in the crowd attempted to get a better view. I think the boys could have done without this parade and this experience. Thankfully the girls were safely tucked on the very front row behind the rope and Ash was not in the mix of all the mess. I just giggled as I watched the guys get grumpier and grumpier as Ashley became happier and happier. After all the whole Magic Kingdom day was planned around her interests and we were going to enjoy it! As the crowd dispersed so did the grumpiness and all was right again.



The parade ended with a visit from none other than St. Nick. By this time in the afternoon Ashley Kate needed a little nap and the big kids needed a little lunch. We hopped into Pinocchio's Village to cool off and allow her to rest while we ate.


Christmas Day was nothing short of amazing. We had such a wonderful time. Ash loved being there and had so much to look at and enjoy. There is no way I can show you all that she saw and experienced, but trust me when I tell you her daddy and I will not soon forget watching her take it all in.

This was our first time actually taking her out into the real world. It was an experience all in itself. Even though there were many stares and question to face there were also many, many smiles, compliments, and joy in strangers eyes as they watched our tiny little one enjoy the magic on this day.

I can see that this post is going to have to be done in parts. I have been working on it for almost 2 hours now and I'm going to take a little break. As I have attempted to put the slide show together I have figured out it needs to take place in parts also. There are just too many pictures to place in one show. I'm still working on it.

Another Day

We survived the night with little to no sleep but none the less have survived. This morning around 6am Ashley Kate's bowel locked up from the scope yesterday and began to cause her some pretty severe cramping. This is not surprising to us because it usually happens since she developed the hernia around her stoma. It seems as though a loop of bowel slips into the herniated area as the scope is being removed causing things to lock up until the bowel returns to its normal position. The surgeon came in and placed her fingers inside the holes of her stoma in an attempt to get things moving once again. We won't know for a couple of hours if it was successful or not, but she was able to cause 40cc of stool to flow out. Thats a good sign. If it doesn't work then she is scheduled for a procedure at 2pm to slip a catheter into her bowel and insert some type of something to hopefully open it back up. This procedure is new to us. We've never had it done to her and we have been in this position several, several times before. They are using dilottid(?) and Lortab to control her discomfort.

The news from the biopsy is that her distal bowel shows no signs of rejection. It looks good according to pathology. The proximal bowel doesn't look near as good, but still they can't rule that is is ongoing rejection. There are signs of healing. Its just very, very slow healing and they are considering stopping the use of Rapimune(one the new drugs they added in October for immunosuppresion) because it is hindering the recovery of the bowel. I asked what our plan was and they said they don't have one yet. They aren't sure what to do and the surgeon will be looking over the slides along with the pathologist this afternoon before determining what course to take. So at this time we don't know much of anything except that it appears the bowel is trying to recover from the last 3 months of rejection. That is good news. How long it will take is anyone's guess. There is truly no way to tell.

In other news, we will be allowed to move to the floor. My head is hurting so bad from the lack of sleep since Friday evening that I'm having a lot of trouble keeping things together. I'm trying so hard not to be grumpy and disagreeable, but honestly I have never had a headache this bad. Ever. I was in tears as I begged our surgeon to please move us up to the floor so we could get some rest. She nodded her head and said, "They can go to the floor". Thank you, thank you, thank you. I can't wait to get to take a nap this afternoon. Ashley Kate has currently checked out on her pain medications and has beat me to it. So in the next couple of hours we should be moving to "our" room upstairs. You have no idea what a blessing it will be to get there.

Ash is back on TPN and no feeds. Starting over again. We're getting pretty good at it.

It has been a very tough fall season for us in the whole bowel department, but it has also been a very blessed season for our family. God continues to bring blessings our way and two of the hugest that stare me in the face are the holidays. I realize they were short lived times in our home, but they were quality times and you can't put a price on that. We were given Thanksgiving and Christmas and Ash and I were blessed to spend half of our trip with Dave and the kids. As I look back to how those events unfolded there is no denying that God's hand was directly involved. We enjoyed our time together in Florida and I have so much to share. There are literally over a thousand pictures that were taken and although I am working through them to share it is proving to be really difficult because I just haven't had any sleep in so many days. I promise to share a couple and write about some of our trip sometime tonight once I get some rest. Just looking at the pictures has flooded my heart with memories that bring smiles and tears to my face. It was a wonderful, wonderful experience to share with our kids. I am so grateful to have had that opportunity.

Dave and the kids just called to let me know they must have taken the wrong bus. They are on their way to the airport and aren't too happy about it. That made me giggle. Dave said the side of the bus said it was a magical express but as they pulled away from the resort it didn't feel very magical to them. They had such a wonderful trip. I look forward to the day when Ash and I will join them back in our little house in Texas.

I'm going to slip down and grab some soup while Ash is sleeping and then I'm hoping to hear that we are moving. Thanks for checking on us today. God bless. Trish

12/29/2008

Hospital Life

After 3 years of living this way there comes a time when enough is enough. Honestly, we've just about had it. To those of you who don't want to read me blow off some long over due steam that is stemming from complete and utter exhaustion then turn off your computers now. The tone of this post won't be pretty.

So last night we were admitted to the PICU not the floor. Why? Somebody please tell me! She is stable. Beautiful vitals. No respiratory issues. Nothing different than what we have been coming to Omaha for over the last 3 months. Being placed in the PICU was a little over zealous at this time and now it seems as though we are stuck here. At least today we have been and tonight we will be spending our 3rd sleepless night in a row. PICU status means assessments EVERY 2 hours through the entire night. To check vitals, breath sounds, pupils, etc. etc. etc. That means coming into the room, turning on the lights, waking a sleeping baby, shining flash lights in their eyes(although I was asked if I wanted to refuse that portion and I said, "sure, right it down that I refuse"), putting cold stethoscopes on their chests, taking blood pressures, and temperatures. Ok, I get the importance of that in many, many, many situation, but at this time, thank God, this is just not necessary to care for Ashley Kate. She is probably the most stable PICU patient in this entire state. The reason for not moving us to the floor today? They wanted to make sure she didn't swell up and get an ilius after her biopsy. Even though our last 5 scopes over the last 3 months were done by the same doctors in this same hospital and we lived on the floor not the PICU. Explanation? There is none. Well, that was hours and hours ago and her bowel is making strong sounds, stooling, and she is not uncomfortable. Can we please go to the floor where she will be allowed to rest and heal? Nope. Not happening. OK, I'll do my best to deal with this situation, but honestly I'm extremely grumpy and having not one nurse tonight but two entering our room every two hours to wake us is not sitting too well with me tonight. Nothing personal, I like the nurses, but I don't like hospital life and this is exact situation is why.

Unless you have lived or are currently living in a hospital and have experienced this first hand then I'm pretty sure you are thinking, "What's her problem?" I warned you this post wasn't pretty. On top of all of this I'm not a parent who is fond of having strangers given the right to wake up our baby and place there hands all over my kid. Sorry, but its about the most frustrating loss of control I have ever experienced.

Ash and I are beyond tired. I'm not feeling very cooperative tonight. If I could lock the door on this room then I promise you I would. Its just where I'm at during this moment. I'm so sorry for venting but its better I do it here than open it up on some innocent person who is just here trying to do their job.

So my puffy, pig tail, pink clad, baby girl is sitting in the middle of a huge hospital bed with Frosty the Snowman playing on her little DVD player and Blue playing on the large TV. I know she's wondering what in the world I was thinking choosing this place over Disney World. Somebody please wake me up from this nightmare. I'm beginning to wonder about that myself. She remain fever free, no indications of being ill other than high stool output and low sodium and albumin levels.

How did I know to take her in to the hospital? All I can say is that I know her well. I can look in her eyes and now that somethings not right. I could tell her energy was dwindling and I needed a set of lab work to see what was going on. An ER was our only option. We also knew that once we "pulled the trigger" our vacation would be over and we would be on a flight to Omaha. What do you do? Even though nothing is being done to treat Ashley's rejection yet, and even though she would have been fine to finish the last two days of our trip once she was given some sodium and an albumin bolus, and even though we would have happily boarded a plane Tuesday afternoon to Omaha instead of Texas, the moment we entered that hospital we knew our decision making power would be taken away and we would be on that plane. That is why we are here. We knew all along, as did every one involved in her care, that she was still healing from ongoing rejection. It is no surprise to us or to them that we are back in Omaha. Last Saturday when being discharged it was left "open ended" as to whether or not she would need to return.

Why does she keep rejecting or why can't they get it under control? That seems to be the million dollar question. Basically medicine is a guessing game. You guess as to what you think will work and if it does then yeah for you, but when it doesn't they guess again and again and again and hopefully something that you try works. So far nothing has done the trick this fall and winter. She is in rejection. I don't have to read the pathology report to know that. Her scope showed some "ugly" areas of tissue and some "healing" areas of tissue. Exactly what the last 4 have shown us. What are we going to do? I haven't been let in on that piece of the puzzle just yet. Perhaps tomorrow? Anyway, I'm starting to feel a little more under control. I suppose I will attempt a shower tonight( each time I have tried today there has been a line) and then make myself a pallet on the floor of this room in the PICU(even though its officially against the rules. If you haven't noticed I just don't care about hospital policy these days) and try not to cry myself to sleep. I'm already missing Dave, missing my kids and missing our home. It hasn't even been 24 hours yet and who knows how long we'll be here this time. Hopefully tomorrow will take us back to the floor to the room we were "living" in a week ago(where I am told still smells like us. I love that!) and to a private bathroom, shower, the ability to sleep in pjs, lay down on a pull out couch, play on our rug, and make the best of our hospital life while being surrounded by friendly faces who truly want for Ash to get well and be on her way home. Thats my prayer tonight. Please get us to the floor where we can try and make some sort of "normal life" out of our crazy one again.

I promise a slide show is on the way. I'm just having a hard time putting it together. Thanks for listening to me rant. Tomorrow's got to be a better day. I hope.

What's in Store for Today

The current plan is to biopsy Ashley Kate around 2:30 this afternoon. I'm not in complete agreement with this because I don't expect that we will get any different results than we have had in the last 6 scopes. I know she is rejecting her bowel. WE all know she is rejecting her bowel, but they just want to look at it again. So...I signed the consent even though my preference would be not put her through intubation and sedation and yet another biopsy. I would like to begin treatment today. Immediately, but that will not be the case. So we will prepare for biopsy and then begin waiting on pathology once again.

She is very, very dry(meaning her hydration) and her kidneys are not peeing. She has had no urine out in the last 14 hours. Her albumin is spilling through the walls of this bowel and so all the fluids we are pumping into her are third spacing(meaning they aren't holding inside the vessels but seeping into the tissues) and she is very, very puffy. All of this makes the whole intubation issue trickier and makes me nervous. Outside of all of this she actually looks pretty good. I mean she's puffy, but her color is beautiful and her hair is messy and her grin is oh so sweet. She doesn't feel that bad and for this I am so, so thankful. Once treatment begins I know things will become much harder on her so I'm appreciating the steadiness of her current condition. She remains fever free and nothing has come back positive in any of her blood or stool cultures yet.

Dave and the kids have a very full and exciting day planned. I spoke with them early this morning and they continue to be enjoying their vacation. My heart is blessed each time I think back to all the fun we had together this last few days. If you had searched the world over you would not have found a happier couple in all the earth. We truly enjoyed our children and our time together. I am working on a slide show of some of what Ash was able to see and experience. It may take me the rest of the day to sort it all out. There are things that she missed out on like her storybook princess dinner that was scheduled for tonight(so I have no pictures of her with any of them) and getting to wear her mickey ears(I had them all embroidered and they weren't going to be ready to pick up until Friday afternoon which was when the ambulance had to be called). I'll just have to fake those pictures once we get home or something, but the joy in her eyes of all that she did behold was amazing. Again, my heart is disappointed but yet still so grateful.

Thanks for still being here with us. I know its hard to understand all the ups and downs of transplant life( especially if your not living it), but it is life and I wouldn't trade a moment of hers. She is the sweetest thing we have ever held and one of the happiest little people you could ever meet. Your continued presence on this journey is a blessing to me and I love you guys so much. I'll let you know whats going on after her biopsy. Take care. Trish

12/28/2008

Our Fairytale has ended...

...and tonight our princess rests not in the glow of the castle and all of its magic, but under the glow from the lines on the monitor once again. Its just not much fun coming back to reality, but the magic and memories we have made will be cherished for a lifetime.

We're here. The flight was a little longer than it usually is. I guess Florida is farther away from Nebraska than Texas. Anyway, it was a good trip. Ash and I are really exhausted. We've had little to no sleep(except for the naps we took on the flight) for the last couple of days. She is currently in PICU, but we are hoping for a quick transfer to the floor. Tonight or in the morning? She looks good and is laying in bed crying for her, "bu, bu, bu, bubba". More labs have been sent and cultures drawn. We'll just have to wait and see what the next few days will look like. If she is septic(which currently she doesn't present that way) then it could get really ugly. I'm praying its not the case.

Dave and the kids had an amazing day. We decided to keep things on schedule and just allow Ash and I to have our trip interrupted. I'm so glad we did this. Although they are concerned for Ashley Kate they managed to continue having a wonderful time and nothing made my heart happier than to listen to them ramble on and on about all they were experiencing. I love them so, so much and this is not what we had hoped would happen, but it is our reality. Its just the way life works for our family and we are rolling with it the best that we can. They have another day and 1/2 left in Florida and then will be arriving to our home in Texas sometime in the late evening hours on Tuesday. Seizing the opportunity to make more memories with the kids is exactly what Dave is doing and I wouldn't have it any other way. He promised to make some more magic with them and I know he will. I'm so thankful they have him when I'm forced to be away.

I'm just to tired to think much tonight. Omaha. Its not my favorite place, but it is familiar. Much more comforting than the halls of the hospital in Orlando where I knew no one and had no support. There were some amazing nurses and I'm thankful for the job they did, but knowing we have friends here in our hospital makes life more "doable" for me. Tomorrow we will start on the path to healing and recovery again. I'm hoping we can do a little better job of it this time and perhaps have the opportunity to make it home for a long while.

I'm going to settle in to the familiarity of my recliner and try to grab a few moments of sleep. Your prayers are greatly appreciated. Good night my friends.

No regrets...We'd do it again...

...even if only for a day.

Ashley Kate and I spent the night in an Orlando Children's hospital. We are now awaiting our flight crews arrival to take us back to Omaha.

She looks...great. Her lab work...does not. It appears as though her gut continues to be in rejection and is spilling albumin and sodium by the bucket fulls. Her white count is elevated and the word "sepsis" is being thrown around pretty freely. She has no fever, is breathing well, shows no real signs of being ill. She's not exactly herself(a little puffy from all the fluids they are pumping and a tiny bit grumpy from needles and such), but all in all she looks to be pretty stable. The main issue is what Dave and I have suspected all along... ongoing rejection. Her bowel has yet to heal from the episode that began in early October.

So all though my eyes have shed many tears from frustration, disappointment and exhaustion, my heart is MORE than grateful to have had this few days here at the castle with our children. Dave and I would do it the exact same way a thousand time over to have made the memories we have this week. In our opinion, the Lord pulled a "fast one" on everyone and made this last week possible for us by giving Ashley Kate the needed numbers for our discharge last Saturday in time to take this trip together. They could find no reason to keep her in the hospital and sent us on vacation with their blessing. She is still not well, and we all know that.

Dave has kept the kids busy at the parks. They are sad, but still happy. They each wrote us a note and thats what caused my tired self to fall apart this afternoon. The words and pure appreciation that came from the hearts of my children as they shared with me that they had no regrets about bringing Ash to Disney touched my heart. They sent their love, their prayers, and their precious, precious appreciation for each day they spend with their baby sister. They were truly grateful to have had her with them the last few days and to allow her to experience a little bit of magic. I wish you could have seen her eyes light up moment after moment after moment. I will never forget this experience. There have been some tough moments and some touching moments this week. I sat next to my son on main street and cried with him as he watched Ash enjoy the lights and music of Spectro Magic. His heart is broken over her broken body and how I wish I could take the hurt away from each of them.

Sorry, the crew just arrived. I'll share more later once we get settled.

12/23/2008

From our Home to Yours...

...we welcome you and wish you a very Merry Christmas. Take a peek inside, grab a jacket, its a little chilly here this morning. Thank you for coming. We love you and are thinking of you this holiday season. Enjoy.




Praying Hard for Our Friends

At this early hour I found a moment to check on two of our very special, very sick transplant friends. They each received their transplant in Omaha just as Ashely Kate. Oh, how precious these little girls are to my heart. As I type this morning they are each very, very sick and will be spending Christmas in the PICU. One in Omaha, one in Shreveport desperately hoping not to have to return to Omaha. I love them both so much and my heart is breaking as I read the words of their mommy's hearts.

Once again I come to you my friends because I have "seen" you on your knees before our Father before and I have felt the impact of your prayers and I ask you to take a moment and pray for our friends. You have prayed for our friend Kylie before and now I ask you again. You have also prayed for our other precious friend before and I will not post her name because I have not spoken to her mommy to get permission to do so. Although I know she would covet your prayers this morning for her little girl. Please, please pray for them. My fear of Christmas in the hospital is their reality this year. Unfortunately it is always some one's reality as they sit next to the beds of their very sick children in PICU's all across this country.

I do not pretend to understand any of this. This life of ups and downs. Last night my heart was broken as I said to Dave, "It is unbelievable to me that all we wanted for our little girls was for them to live and in doing so we have had to allow them to be made so very weak." Their little lives are gifts. The most precious gifts we have ever held close to our hearts. As I love my sweet Ashley and would do anything to make her life sweet, my dear friends love their baby girls as much. They too would trade places in a heartbeat with their girls to give them a full, happy, pain free life.

I know you are busy with family, holiday plans, and travel. I sincerely ask if I might have a few of your moments. These three little girls mean the world to us, just as your precious children do to you. If you would lift them before His throne this holiday week I would forever be grateful to you. Hug your babies closer this Christmas. Sit back and absorb each smile, each giggle, each twinkle in their eyes. I promise you they are there. Be still long enough to find the gift you have been given and just praise our God that He has blessed you. We are all so blessed. I love you guys and I thank you in advance for your prayers. I know you will be on your knees. Trish

12/21/2008

Home Again

We're home. We traveled over two days breaking the trip up and stopping to visit with family, hug their necks, wish them Merry Christmas and allow them to peek at our princess. Dave and I enjoyed our drive with Ashley Kate yesterday. We were probably the happiest two people you've ever seen traveling down the highway. We smiled and smiled and smiled as we watched our baby girl play in the rear view mirror. She truly is a gift. A gift that can't be topped.

Today we headed out with our explorer packed to the top and full of children. All three of ours with us and all of our stuff traveling down the highway once again. We laughed, sang Christmas carols along with the radio, stopped about 30 times for this one or that one to use the bathroom, readjust, or change places, and enjoyed every single minute of the 6 hour drive into Texas and up our little street. We pulled into the drive about 7pm and jumped out of the car to plug in the lights, turn on the music, and light the candles. Then I slipped out for a little while to finish up some last minute items I didn't have a chance to complete before heading out to Omaha and Dave and the kids played board games and got our pickle all tucked into bed.

Once I got home I baked cookies for Blake and sat in the floor with Allie and dumped out our "vacation fund" so that we could get it ready to take to the bank tomorrow. Her eyes lit up as she counted pile after pile of change. We keep a huge water bottle in our closet and toss all of our change into it throughout the entire year. The money inside of it becomes our spending money for vacation and then we don't have to take a chunk out of our bank accounts while we are gone. The kids love seeing it get full through the year and every once in a while you will see them searching the house for lost change to add to it. It makes me laugh to see how excited they get over the discovery of a quarter behind the couch or a pile of dimes and nickels found in the dryer. Anyway, Al is looking forward to taking it to the bank tomorrow so she can cash it in for larger bills.

It feels so good to be here again. I have no idea how long it will last for us this time, but walking through that front door is the best feeling in the world. Burdens are dropped on the front porch and not picked back up until we find ourselves heading back out for another stay in Omaha. The house is so warm, so beautiful with the glow from the lights on the tree, and so yummy smelling. The older kids are too excited to sleep and have decided to have Al sleep on the extra mattress in Blake's room so they can visit and listen to Adventures in Odessey tonight. There is much cleaning, packing, and planning to do tomorrow, but for tonight I think I'm going to go kiss the foreheads of my children and whisper to them how very much I love them and then snuggle up next to Dave. I can't tell you how grateful I am to be home with Ashley Kate. Coming home never gets old. Each time we are allowed to come back it feels better, and better and better. I'm just so thankful to be here again. I pray it will last for a long while. She needs a break and so does her mom.

Thanks for praying for us this week. It was a long one. She's still got a long way to go, but she's gonna get there. Someday. For today, she is happy and for that I'm thankful. God bless guys. Goodnight. Trish

12/20/2008

Out the Door

Here we go...out the door...in the SNOW!!! Yeah, us!

Dave and I are so excited!!!

We will see you guys(or talk to you guys) soon.

Have a great day. Trish

The day

I'm so excited and if I'm totally honest very nervous that I can't lay there and pretend to sleep any longer. I can't believe we are leaving today. Days like today are always hard for me to wrap my mind around.

Ash has done SO well over the last 3 days. It really is amazing and has left us all stunned by the progress her little body has made. Yet, this morning she is stooling a little higher than she has the past 3 and so of course it has my heart racing. I wonder if this will ever get easy? I wonder if I'll ever stop paying such close attention to the amount of stool she puts out? I wonder if I will ever just relax and concentrate on being her mom?

From looking at our grafts and records the best we can figure out is that Ashley's rejection had settled itself down and was on the road to healing until she the weekend she caught that little cold. A runny nose and cough sent her back the opposite way and her body slipped right back into rejecting her bowel. Once her immune system attempted to ramp up to fight off the cold it sent her body into overdrive and her organs became at risk. What a scary way to live! The smallest of colds can put us right back into trouble? I wouldn't even believe it if it hadn't happened to us.

Our room quickly changed back into a regular old hospital room last night as we carried out her tree, rolled up her rug, and took down her ornaments. Its incredible what a little bit of something special can do in here. Dave looked around last night and shared with me how much he appreciated all the little things I do for her while we are here. I listened to his words and tears instantly appeared in my eyes. I'm thankful it makes a difference. Not only a difference for Ashley Kate as she spend so many days away from our home, but also a difference for Dave, Blake, and Allie. I think it makes it a little easier on us all during these times to bring any amount of "something special" to the situation. So I sit this morning with lots and lots of clutter around my feet. Duffel bags and suit cases, stroller and car seat. Everything is pulled out into the center of the room just waiting on that rental car to pull up so we can pack our "lives" into the back of it and head home to the place we are supposed to be living them.

As excited as I am to be leaving, especially in time for Christmas, my stomach still churns with nerves. Each and every day is a new story with this transplanted organ. We have three, but its just the one(Praise God its only one) that gives us such trouble. Learning to live in the moment, taking nothing in her life for granted, and celebrating the simple things has been the biggest lesson of my life. How grateful I am for that tiny donor who gave up so much so that our Ashley Kate could live this life. Without that gift she would have been gone and our hearts would be left with such emptiness. I never want to know what that would be like. I pray God spares us that pain.

Well, its time to put this day in motion and take the first steps towards our magical holiday. How sweet it is knowing Dave and I will be traveling the next 9 hours with our tiniest in tow and on our way to retrieve our two oldest. By this evening we should be a group of 5 again, and I don't mind sharing with you that 5 is my favorite number. Its SO much more than 4.

Thank you from the bottom of our hearts for your prayers. We love you guys and wish the merriest of Christmas'. Make them special. No matter what is or isn't under that tree. Take from me, its the people around it and the time you are given with them that makes the best gifts. Talk to you soon. Trish

12/19/2008

Good News

This morning the surgeon looked at us and said, "Lets top her off," and the he began to kick his foot. I couldn't help but smile at him because although he didn't want to commit to saying the words he was "giving us the boot". I was grinning ear to ear and had to ask, "Are you serious?"

He followed by saying, "We've done everything we can do at this point and she is doing as well as she can. You might as well go on your trip and we'll just keep a close eye on her."

Needless to say we are rejoicing!

Originally he wanted us to stick around until Monday and then after labs he would give us the go ahead to leave Omaha, but Dave explained the logistics of what would work much better for us and he said, "Well, lets put it to a vote." At that time the nurse practitioner assured him that she felt we should go and that we would have her on a plane to return if she was in trouble.

"O.k., go ahead and make your trip to Florida and we'll just leave it open ended. If she's still doing well then go home. If she's in trouble or things begin to change then bring her back. I just didn't want to upset the "transplant gods". Just for the record, we know he was joking , but Dave and I don't believe in the "transplant gods". We prefer to believe it was our God that made this happen for our family and we are so very grateful.

Ash is currently receiving another blood transfusion. For some reason she is losing blood and we can't seem to figure out why. They ran many, many tests looking for a reason but came up empty handed. We are just going to keep a close eye on it and keep filling her up for now. Our best guess is that she is probably losing it through her ostomy sight.

So the plan is to stay one more day, give her the blood, and be discharged after labs tomorrow morning. Dave and I will be traveling with Ash to Oklahoma in a rental car and then will pick up our car and our children and make the rest of the trip home on Sunday. That will then give me a day to do laundry, pack, and then we will be on our way to Dallas Tuesday evening(which happens to be Dave's 35th birthday) and we will fly out Wednesday morning.

I'm so excited and so grateful. I can't express to you how thankful our hearts our at this time. Thank you so much for your prayers. We love you guys. Trish

What happened?

This post is basically a question for any blog writers out there who may be able to help me. Last night while I went to my blogger dashboard to read the comments I all of a sudden had the last 2111 comments disappear. The dashboard is now showing that since then I have another 18 new comments that have been left, but it only allows me to see the first 5000 comments(it leaves off somewhere in October). I'm not sure where 2ooo and something comments went to? It is still showing the number of new comments as they are left, it just seems that I can't find them and have no way of reading them. Can anybody help me find them? Obviously I won't be able to read your response(if you have one) in my comments so please e-mail me at www.ashleysorgans@yahoo.com.

Thanks for your help. I haven't heard from Dave yet to see if he actually has a flight this morning or not.

12/18/2008

Cancelled

Dave will be attempting to sleep on the floor in the airport tonight in Dallas. He flew in from Longview and doesn't have a car and all of the airport hotels are full because of the many stranded passengers.

Currently his flight has been rescheduled for 6:30 tomorrow morning. Praying it will make and he will arrive here at the hospital around 9am.

Your prayers for his safe travel are so appreciated. Thank you.

Ash has made it to 75cc an hour on her feeds. Only 5 more to go until she meets the goal set by the surgeon this week. Her stool output has been good as well. She has not had any fevers for the last couple of days and if she can hold her own for the weekend we may get our discharge. I'm trying not to be too hopeful for fear of disappointment, but I am encouraged tonight by her progress. She looks really, really good and has been tucked in for the night. I'm off to watch a little Pride and Prejudice until I fall asleep.

Hope your day was wonderfully blessed. Trish

Currently...

...Delayed and will announce at 11pm if it is cancelled.

Looks like Dave could be sleeping on the floor at DFW airport tonight.

We're really sad. Ash and I had been looking forward to seeing him all day. Perhaps the weather will lighten and he will get to come anyway? Its not forcasted to get any better, but we sure are hoping for it too.

A busy little elf


Ash and I busied ourselves working on a surprise for her daddy today. She was happy to help make snowflakes, play in all of the papers while I laid out a new bulletin board(from our left over scrapbook papers! Yeah us!) and draw her first masterpiece for his Christmas present.


Here is how the bulletin board turned out. It matches her tree and ornaments.


This is her masterpiece. I think I'll frame it for his personal office at the clinic. I'm so excited to see his reaction. We have been trying and trying to get her to "color" for three years and she finally showed an interest. She made this all by herself this afternoon and I absolutely LOVE it!

The snow storm is moving in and the nurses are going home early because the roads are getting slick. Dave is currently in Dallas on a 4 hour lay over and I'm really hoping for safe travels for him. I'm not sure if his flight to Omaha will be canceled or not. I hope not. We are really looking forward to his visit this weekend.

Address

I have hesitated to post this information because I really want to not be here, but so many have asked that I decided to go ahead and let you know where we are.

Nebraska Medical Center
Ashley Adams #6231
42nd and Dewey

Omaha, Nebraska 68198



If we are gone before a card or package arrives for us they usually do a very good job of sending it on to our home in Texas. It sometimes takes a couple of weeks, but eventually it gets from the mail room here at the hospital to Ashley Kate.

Laura, Thank you for your card. It was such a blessing to receive during this time. I think it was a little delayed in getting to us, but it came at just the right time. Thank you for your thoughtfulness. I just wanted you to know that we did in fact receive it.

The Season

This morning Ash and I sit in our room in Nebraska and do our very best to keep our spirits high. Each day I find the calendar slipping closer and closer to Christmas day and the date reminds me that we are not home. We are trying so very hard to be content in this situation. We sit here and listen to carols play all through the day. We drink in the delicious smell of Yankee Candles Christmas Cookie plug in and pretend we are home. We stare at the lights on our little tree(I am so, so thankful for this little piece of magic) and allow the glow to light our room each night. We snuggle in our recliner or lay on our rug underneath the colorful ornaments and watch them sparkle as they dangle above us dropping glitter into our hair. If you imagine hard enough its kind of like sparkly snowflakes falling to the ground. Our skin, our hair, our clothes, our rug, our everything is sparkly from the glitter and it makes me giggle. We will probably be sparkling well into the spring because getting it to wash out of hair has proven to be difficult. Still I feel an emptiness inside of me. Giving this room our best efforts has not proven to take away the loneliness we feel without Blake, Al, and Dave.

Christmas is more than just the day. At least it is to me. Its the whole season. The weeks leading up to that day. Its the experience. The feelings. The smells. The sights. The music. Its having days at home with no where to go and hours to sit together working puzzles, or baking sugar cookies, and wrapping gifts. Its watching Allie search and search for that special something to give to Ashley Kate. Its snuggling under the "longhorn" blanket in Blake's special spot and just waiting for him to come bounding into the room and squeezing in behind me as we settle in to watch a holiday movie. Its having the "magic" inside of our home ready and waiting for Dave as he comes in from a long day at the office. Seeing him settle on the couch in his sweatshirt and flannel pants with a look of pure contentment on his face because he is home and all the people he loves are there.

So this morning my heart is struggling to hold on to the hope that we will be discharged in time to make memories with our children this holiday season. We are inching closer and closer, but are not yet there. Not much was said in rounds this morning. I believe everyone is pulling for us, but still not much can be done if Ash isn't well enough be discharged. I don't believe she will be out of rejection by Monday morning, these things take time, but I do believe with everything in me that we should go on this trip. No regrets. That's our goal. When it comes to raising our children Dave and I have made up our minds to not miss opportunities to make their childhoods special. When they are grown I want to look at them as young people and know that I have no regrets. I want to know that I did my very best to be the very best mom to them I could possible be. Concerning Ashley Kate and her fragile health this conviction is even stronger. She could so easily slip away from us at any time and I refuse to wish I had this or wish I had that with her. I need to know that she was given opportunity to live, to experience, and to enjoy her life.

Another winter storm is on its way to Omaha. Dave is scheduled to arrive around midnight to spend the weekend with us. In a perfect world, we would be granted a discharge on Sunday morning and that would allow us to get a rental car and drive to Oklahoma together to retrieve our car that was abandoned there and pick up the older children. Then I would have the opportunity to pack for our trip on Monday and get ready to travel to Dallas to catch our flight on Tuesday. This would be ideal, but who knows if it will happen or not. They have been talking about a possible discharge on Monday if her goals are met and she is doing well. We would be allowed to take her on the holiday trip and then she and I may have to return to Omaha for a while. No one really knows what will happen over the weekend so they are afraid to commit one way or the other. Currently she still looks amazing and her gut is still in rejection.

I hope you are enjoying the last week of holiday hustle and bustle. I love every single thing about this season and I wish we weren't so isolated from all that is happening on the outside of these walls. Oh, how I wish we were out there in the middle of it all. Enjoy it. It ends way too soon. Have a great day. Trish

12/17/2008

Guess Who's Coming to Visit

Updated: The visitor has come and gone. Be sure and scroll down to check out the new pic!




...Guess who's excited about it?

We hope to post some pics of the whole experience later tonight. I wonder if she'll still be this happy once he gets here?




Not quite as happy about actually seeing the man in red, but its the first picture of her with Santa without being on the ventilator so I'm happy. You also have to take into account that it was way past her nap time and I kept her awake so she didn't miss his visit.

Looking Up


Here she is enjoying her Christmas decorations. She just keeps looking up. I'm trying to learn this lesson from her this morning.

We have bad news, good news, and a possibility(although it is a stretch) of great news.

The bad news. She is in ongoing rejection.

The good news. She looks AMAZING and the whole team agrees that they have never seen her look so good.

The great news. If she can accomplish the VERY high and almost unrealistic goals of this surgeon then he said he is supportive of us being able to carry out our holiday plans. "It is dependant on her. How well is she going to do? If she doesn't do as well as I'd like to see her do then we will have to continue more aggressive treatments, and that would require her to stay here. Sorry."

So, I'm hopeful but still on the verge of falling apart. He didn't say no, but he didn't say go. Like I said I'm trying to follow Ash's example this morning and just keep looking up. I can't take my eyes off of the ONE, the only ONE who can make this happen for her and for us. Still I'm shaking and the tears are stinging my eyes. I so desperately want to take this trip with our children and all be together for Christmas. I really, really do.

Currently the plan is to take it slow in the treatment department, but push, push, push her gut to adapt to full feeds by Monday. I'm not sure I agree with either of these things, but its not me that gets to decide. We are not going to treat her rejection with anything other than running HIGH immunosupressant levels. He is hoping to cool off the ongoing rejection in this manner. At the same time he said she HAD to be on full feeds and maintaining normal stool ranges to be allowed to go. I am so nervous about not being aggressive against this rejection. I'm thankful for Ash's sake at the present time because treatment is miserable, but frightened it may not do the trick. I am doubtful that she can advance 20more ccs an hour so quickly. I have never seen it happen in this child. Especially while she is in ongoing rejection. Slow and steady is how we've come this far and I am afraid if we push her the output is going to jump and then the surgeon will say, "no go".

So there are many, many things to pray specifically over. First and foremost the rejection. We need this bowel to stop rejecting so that it can heal and she can get well. Secondly, the treatment or lack of. It has to work or we will be spending Christmas here alone and in ongoing treatment which will make for the most miserable holiday for our sweet Ashley. Thirdly, feed advancement and stool output. They want to get her to 80ccs by Friday and then see her maintain it till Monday. This is going to be the toughest area of all for Ash. Lastly, our spirits. They are encouraged at this time, but still shakey. I just don't know if its going to happen.

12/16/2008

A little bit of Magic...

...for our princess.

Ash and I spent the day in decorating mode. It was so healing to my heart to have the opportunity to create some sort of Christmas magic for her. She actually slept while I was hanging the ornaments that you see in this first picture. I attached them to the ceiling right above her rug so that while she plays they hang above her. I tried to capture a picture of her as she stared up at them this evening, but was unsuccessful. It was so sweet to see her enjoy them.



This is how her tree turned out. I used the ribbon that our lead nurse brought to us this morning and the pack of scrapbook paper I found in my suitcase. Poof! This is what happened when we mixed the two together. It is actually very, very sweet, and I think we love it.



The paper pack had printed words on some of the papers so I cut them down and hung them on strings to make ornaments. This is one of my favorites because it is one of Ashley Kate's favorite things to do.



I cut out the letters and glued them together to fashion ornaments. Noel, Jesus, Joy. Things like that. Only the Father knew that I would be needing that scrapbook pack that was left inside that pocket by accident. I think thats what I love most about this tree. The day I bought these supplies I had no idea I would be using them to make Christmas magic for Ash. He did. Just another one of those provisions He has given to us. The colors aren't really Christmas like but they are definitely "Ashley" like.




This is a close up of one of the ornaments and ribbon that hang from our ceiling. The minute the nurse walked in with them I knew exactly what I wanted to do with them. It is truly magical to lay underneath them and watch them twinkle. I am so, so grateful.




What a blessing to have such sweet, sweet nurses. They knew our hearts were broken and that we were missing our Christmas tree and so they went out of their way to bring us a tree and supplies. I am truly touched by their kindness.

So tonight Ash and I sit here in our room on the 6th floor in Omaha, Nebraska. Once again it is Christmas time and we have no idea if we will be allowed to go home to celebrate or not. I read through my journal from the last two Decembers and the tears flowed. God has really done some amazing things and I decided to leave room for Him to work again. Its not impossible for Him to make this happen for us.

We are happy and in our little room with its Christmas decorations tonight. It smells delicious(thanks to one of our nurses who picked up our favorite scent for us to enjoy). It is quiet and peaceful as the lights glow on our tree and the music plays. I am going to rock our baby pickle to sleep and face tomorrow when it comes. For tonight we are enjoying the fruits of our labor.

Thank you for your prayers for Ash and for our family. I can feel them and I love you for caring so very much about us. Have a good night. Trish

"At the end of the day..."

...all that matters is if the gut works. That's the goal. A functional gut, and it looks to me like its working pretty darn good. She's more than 3/4 of the way there. We will just have to wait and see what pathology tells us. If there is acute rejection then we treat it."

That's the word from rounds this morning. What does it mean? I'm not sure except that we are still waiting on pathology to develop our plan. Acute rejection has to be treated. Chronic rejection basically tell us the gut doesn't work. It can't tolerate any feedings and the patient goes back to relying on TPN for their nutrition. Then the side effects(choleostasis of the liver, or liver failure) starts to set in and the patient must be re-listed for transplant. That is the explanation I was given this morning. So does she have chronic or acute? Well, it seems to us by looking over at her feeding pump and seeing the number on 60ccs of feeds with the goal being 80ccs that the gut is working to some extent. Not perfectly according to the amount of output she is having in her ostomy, but clearly working. I would think that is encouraging.

Still the biopsy results will send us down the path we are going to have to travel and where that path will be traveled at this time looks to be Omaha, Nebraska unless we can all sit down and come to some type of compromise.

I'm going to concentrate my energy on being thankful for a semi-functioning gut because before transplant we didn't even have that. Ash is sleeping peacefully at this time. She's had an uncomfortable morning with lots and lots of cramping, but we are hoping it was all stirred up from the scope. I'm going to run down stairs while she's resting and grab a cup of soup for lunch. The snow is coming down outside our windows and the Christmas carols are playing. I'm working on some "decorations" for her room from some old scrap booking papers I found left inside the front pocket of my suitcase. What a treasure! One of the nurses brought in some ribbon and some brightly colored glass ornaments that she wasn't using this year and another nurse is bringing us a Christmas tree. I'm going to see what kind of magic I can make for her while she sleeps.

Hope your day is blessed with magical holiday moments. Trish

12/15/2008

Imagine

If I close my eyes tight enough and be still long enough then my mind drifts to home and I imagine that we are there. I can smell the Yankee candle burning on the mantle. I can see the lights glowing on the tree in the family room. I can picture Blake in his "spot" across the room from me on the couch cuddled under his Longhorn blanket. I can hear Ashley Kate giggle along with Allie as they share secrets together as she is tucked into her crib by her big sister. I can feel the strength of Dave's hands as he hugs me tight. Tonight I allow myself to imagine and I am truly grateful for the last 4 weeks we were given in our home. It was during those weeks that I intentionally burned these memories so as not to ever forget how good it truly felt to be inside of those walls.

Tonight our home is quiet as Dave climbs into our bed. There was no pickle to greet him as he came home from the office. There were no children to pray with before going to bed. There was no me to visit with as we drifted off to sleep. As much as my heart is confused and hurting tonight for the place that I find myself in it hurts even more for the empty home that Dave has come home to. It is so very different than it was a few short days ago. How lonely it must be for him.

"I just don't get it." That was his reply as I selfishly interrupted his work day just so I could hear his "rainbows and daisies" encouragement. There was none offered. He was just as stunned as I was as I stood and watched that camera shoot the pictures of her damaged bowel on the screen. Stunned silence. I had nothing to say.

I totally agree. I just don't get it either. I really and truly don't. I never will. Its just to much to comprehend.

I'm willing us to fall asleep. My little pickle is giggly and wide awake as she plays in this crib and babbles, "b,b,b,b,ba, b,b,b,b,ba" over and over again. My head is aching and my eyes are weepy. Crying doesn't help. It just makes my head hurt even more. I need to sleep. Sleep long enough to forget where we are and what it seems we may be facing tomorrow. Sleep so deep that I forget our silly baby is sick and imagine the twinkle in her eyes as the lights from the castle magically appear before her. I kiss her a thousand times and just breathe her in. Her joy, her laughter, her innocence. She is unaware that anything is wrong. Just silly and sweet. So, so precious. I love this child. I love her so very much and as crazy as it sounds I would be willing to do this all a thousand times over as long as it allowed us to keep her in our lives. All the hurt and the confusion and the frustration disappears when I look at her face and see the spirit He gave to her. The beauty of who she is overwhelms me and I love her so much that I would do anything to keep her from all of this.

I want so badly to allow her to experience life. To see and do and touch and feel the world around her. To take her outside the walls of hospital rooms and give her the life she deserves to have. A carefree childhood. I know that I should have outgrown this imagination stuff years ago, but even at 34 I hear myself saying, "Lets pretend...." Even if its just for tonight. Lets pretend she is healthy and whole and on her way to meet the mouse and see the lights of the magic kingdom. Thats what I'm imagining.

Direct Quotes

" This is ugly in here."

"A very unhealthy bowel."

"I see very little anything. Not much mucosa. A couple of places where villi are coming back, but just a few."

"I think its a case of chronic rejection."

"We'll just have to wait on pathology."


I realize this is not the final determination and that won't come until tomorrow at the earliest, but I do believe this doctor knows what he's talking about. He's been doing these scopes for the past 17years and has done thousands of them.

I asked why? how? She looks as though she is getting better. We treated her for rejection twice. She is on more anti-rejection drugs than ever. What happened. His answer? "Sometimes the cells just go the other way and we don't know why."


I left feeling defeated, broken, hurt, disappointed, stunned, angry, protective, and defiant. I know its not right, but its honest. This is what our transplant journey has reduced to me. Oh, how I wish those were not the feelings I had inside of me, but they are there and today I don't have what it takes to even begin to make them go away.

I'm giving in and searching for some sign of Christmas for my baby. I had refused to actually give up until now and put up a tree here in Omaha because I still had hope we would be leaving soon. I guess I'll try and figure it out now. It may be all homemade, but it will be something. Anything is better than nothing.

Trying


I really am. I'm trying so very hard to be optimistic. To not let this discourage me. To believe that we will indeed take her on her Christmas trip to the castle. I am trying my best to forget that it is Christmas time and that we are not home. I am trying.

Ash will have her biopsy done late this afternoon. Based on those results we will sort of know what direction we are heading. Rounds held very little information this morning. Everything depends on what pathology sees on those slides. It should be back in 24 hours, but all 3 of her last scopes took 4 days to return information. I am hoping this won't be the case today. They upped her goal on feedings from 65 to 75-80. That in itself almost made me cry. We were so close to getting her off of TPN and now it seems so far away. Dave and I had hoped that she would not be on TPN while we were in Florida. Not for any particular reason, just that we feel it would be easier to maneuver her around without the additional tubing coming off of her pic line. I'm sure if we get to go with them, that the last thing I'm gonna allow to stress me out is TPN. I'll be so grateful to have her there on this trip that was planned for her that I won't care what we have to lug around with us.

9 days. That's all we have left. Our plane leaves at 11am on Christmas Eve out of Dallas. Dave, Blake, and Allison will be on it with or without us. I'm SO hoping to be on it with them! This whole vacation was planned at this time of year because it is the only time of year that Dave can afford to be out of the office. We only get to be opened for 2 days between Christmas Eve and New Years so that means we only miss those 2 days. Otherwise vacation planning is impossible because he is needed to care for our patients and shutting down the office for a week is not only irresponsible, but also too expensive. We chose the "castle" because of all of the holiday lights and music. Ash won't be able to do much while we are there, but she LOVES lights and music so we knew this would appeal to her and be very, very special. We desperately need this time away with the kids. Time just to laugh, play, and enjoy life away from deadlines, pressures, stresses, hospitals, and doctors.

Ash looks amazing today. She woke feeling good for the first time in a month! She is smiley and sweet. Signing away and giggling all the while. She didn't even shed a tear when the surgeon spoke to her. That is definitely a first. All of the nursing staff is pulling for us. No one wants us to be here at Christmas time. They all know how very much we love this time of year and everyone wants her to make that special trip. I hope and pray we are getting out of here soon.

I'll let you know something as soon as I do. For now its back to the phones to continue to preparing for the trip. It has to be done even if she and I aren't going the other kids are. Its exciting and sad all at the same time. Hope your day is blessed. Ash and I are just going to hang out here in our room and wait on the snow to start falling. God bless. Trish