In the beginning?

Pat, Ashley signs as a result of her cardiac arrest. When she woke from that event and was taken off the ventilator she was unable to speak. We have a few, too few, short video clips of her sweet, sweet voice, but other than that we do not hear it much anymore. While recovering in Nebraska a blog reader sent to us a DVD called "Signing Time". Until that gift we had no idea what we were going to do or what direction to take. Since that time she has learned over 200 signs and has an amazing vocabulary and communicates beautifully with those signs to those who spend time with her. She has full hearing in both ears and so we are able to speak to her and she can hear what we say. She signs to us her emotions, her wants, her needs, and just to be "chatty" like any other 5 year old. Thank you so much for following us. God bless. Trish


I've been asked many, many times over the last few months about the beginning of Ashley Kate's story and how she got to where she is today. I hesitate to answer because it would take days of writing to give you a glimpse of the beginning to the current time. You are always welcome to go to the ride side of the blog and click on any of the months. Each of them are filled with entries that contain the day to day events of her life beginning in September of 2006. We started the blog around the time of her first evaluation for transplant and it has continued almost daily since that time.

Her story up until that time was documented in the original website that is no longer active. I do have an archive address somewhere around here to the timeline that was written detailing all the events. I'll try and locate that this afternoon and post it.

I guess if I were to share a short, very short, "rough draft" of her life it would be something like this:

Born at 28 weeks. Developed NEC on day 11 and was life flighted to Medical City in Dallas on day 13 of life not expected to survive the flight. Had most of her small bowel removed that very night and was labeled as short gut and TPN dependant. Spent from August of 2005 to January of 2006 in the NICU at Medical City. Liver failure came on very, very quickly due to the dependency on TPN. Adoption expediated and finalized in June of 2006. Scheduled for transplant evaluation in September of 2006. Listed. Got the call 20 days later. Transplanted with a liver, small intestine, and pancreas on September 26, 2006. Spent 6 months in the PICU at UNMC recovering. During that period she survived many, many bouts of dangerous sepsis, a full code and cardiac arrest, and was diagnosed with PTLD(cancerous tumors were in her lungs). We took her home in January so that she could receive her chemo in Dallas at Childrens hospital. Ashley Kate had bouts of rejection that sent us back to UNMC over the years. She also went back to battle a deadly infection of aspirate pneumonia. In between the months and months spent in Omaha we spent months living and growing and celebrating her every breath in our home. Then this summer she developed a stomach virus that eventually led to severe rejection of her transplanted bowel and ex plant in July of 2010. We are now currently waiting her re-evaluation to find out if another transplant is even a possibility for Ash. So...thats it in a nutshell.

There are many private details of her birth story and adoption that we have never shared and may never share. It is a story that is filled with God's mercy, love, and divine appointments, but its not ours to share. It belongs to a little girl who deserves to be known for who she is and not where she came from. A few in the medical community in our area know details that I truly wish they did not know. Again it is not their story to share and yet a few of them do share what they know without our permission. Its a tough thing to encounter when you are out and about town, sitting at a ballgame or in a restaurant and a "stranger" approaches and feels the need to inform us in front of our older children and friends what they "know" about our daughter and her first few hours and days. In some way I see God's mercy and protection over my daughter in the simple fact that she has no understanding of what people speak and therefore it can't hurt her, but my older kids do understand and are hurt by their words.

Ashley's beginnings are precious and private. Its a beautiful story that she may choose to share one day, but if God does not allow it to be told then it wasn't meant to be. Either way I'll be ok with that. The important thing is that she had a beginning, she has a present, and we are fighting for a future for her. I hope this helps those of you who were lost after joining us this summer find your bearings in her journal. I realize its a little bit vague, but all the important parts are here.

Thank you so much for caring enough to ask. Thank you so much for being here with us. Thank you so much for your continued presence in our lives. Thank you so much for loving a little girl enough to pray for her.

Thanksgiving 2010

This picture speaks a thousand words. Look at that face and I'm sure you can imagine the hearts of her mommy and daddy. We are SO thankful to have her in our lives. She has an amazing will to live and as I look into those eyes each and every decision we have ever been forced to make for this little girl are reaffirmed in our hearts. She is worth it. A thousand times worth it.



We do not look forward to what lies ahead for her. Its not what we had hoped or ever really thought about, but we can do nothing but push on toward the goal of allowing this child to grow up. When I look at this face my heart aches over the knowledge of what we will sacrifice in order to grab onto the chance of seeing her come back and live again. She fought hard to get to this place today and taking it from her with the idea of giving it to her longer is so very difficult. I wouldn't wish this on anyone. There are no words to even convey the heaviness of these decisions. We just keep waking up, living life with our little girl, and pushing on toward the goal. Our desire is to give her life. The place she sits in at this time is fragile, short, and so very temporary. Its deceptive. You see her today and its easy to assume shes fine. Truth is she can't go on like this. It won't last. It can slip away in a moment. At any moment. If I could keep her like this, with that smile, and that little twinkle in her eyes then I assure you I would NEVER take her back. NEVER. It breaks my heart to know that I can't. We are going back. In a few weeks we are going back to be told if they will transplant or wont transplant.

The week of December 27th-31st will be one of the most difficult we have ever lived. Either way the team decides to proceed will be hard to swallow. If they are able to list her then our lives will be transformed back into living minute by minute(literally). If they are unable to figure out a way to transplant her then Dave and I will be forced to face the finality of her remaining days. I don't look forward to the re-evaluation. Its scares me. It all scares me.

I'm hopeful that God has some big, amazing, miraculous plan in store for our family. Its all that I can hang onto as we approach the dates. Its what we pray for. Miracles. After all we've seen Him give them to us before. Just scroll up to that picture and think back to where she lay in the months of July and August. She's a miracle. This Thanksgiving holiday was a miracle for our family. A beautiful, miraculous, day. Hope yours was too.

The family within

As we pulled onto the street we could see the Christmas lights at the end road and a smile crept into my heart. We turned the RV onto the drive of my oldest sisters home and I said aloud "it is great to be here. I love how good it feels to step into this house."

"It's not the house that makes it feel so good. All of their houses have had the same feeling. It's the family within it that makes it feel like coming home. The people are what feels so good", Dave said.

My heart was so warm in those first few moments of our arrival and I knew that our holiday had begun. This is why we were here.

My brother in law waved to us from the kitchen window. Two of my Nieces came running out in the cold air and as their uncle Dave opened the door I heard them say " well, hi stranger. We have been waiting for you. My mom came right out to see the "baby". Ashley Kate will always be the "baby". I stepped into the warmth of my best friends home and it flooded my soul. Home. It feels good to be here again. The smell of a delicious candle burning, the sound of the fire crackling, and the lights of her tree twinkling. Yes, it feels like coming home to me. In just few short hours we will be surrounded by our family. The tables will be set, the games and laughter will begin, and I will sit next to my youngest daughter and say a prayer of thanksgiving to the One who allowed us to keep her through another holiday season. Ashley Kate will be surrounded by those people who have loved her deeply, even before she ever came to be, who have cried gallons of tears over the pain in her life, and have prayed without ceasing for her every single day of her life. It's the moments like this that we have fought so very hard to give to her.

I am so very blessed.

My hope for you my sweet friends is that today as you look around whatever home you find yourself in you find yourselves surrounded and blessed by the people within it. Those people around your table will be the very ones who carry you through the darkest times of your lives. They will be the ones who allow you to cry your tears without passing judgement. They will be the ones who pray for you when you can't find the words to pray anymore. They are the family with whom God placed you for a purpose. Love them well. Laugh with them hard. Live today with a spirit of thanksgiving for those very ones He gave to you. Life is precious. It is fragile. It is short. I refuse to waste a moment of it.

Happy thanksgiving to the "family within" ashleys story. You make me feel like I'm home with each day that i spend here with you. Thank you for loving our sweet Ashley and for praying her here to this moment. I promise you she will be well loved today as we thank our God for her precious life. We love you guys.

No Regrets

A few months ago as I sat waiting on the surgeon's to appear from the OR and tell me this sweet girl, with the magical smile, and twinkling eyes had pulled through yet again I shared with a friend how I regretted not snapping pictures of our girl swinging. I cried huge, hot tears tears that wouldn't stop falling as I told her I knew better. I knew better than to let the moments pass and not to capture them. I am the one who decided to live this life as Ashley's mom to the fullest and not allow regret to ever sneak up on me, and yet here she was opened up from her top to her bottom with surgeons hands removing organs and I had regrets. There where no pictures of our Ashley swinging in her playroom. How could I have not taken them. Would I ever see her enjoying her swing again? Would she ever sit under her apple tree and read again? Would she and I ever lay down under its branches and watch the butterflies twirl round and round again? In those moments I truly had no guarantees. There were lots of unknowns and doubts larger than I had ever had before.

We've been home for a few months now and our Ashley has had no interest in her swing. My heart was broken as it filled with regret of the moments I had missed. Until...this afternoon...I Blake called me into the playroom to ask if I had taken Ashley over to her swing. No, I hadn't. She had gotten there all by herself and there she sat pushing it back and forth. As I entered the room a twinkle came to her eye and a smile spread across her face as she signed "swing".

These are just two of the MANY images we captured along with minutes and minutes of her on video swinging. My heart is so full of joy. So full of thanksgiving. Today I have been blessed. Even more so than I could have imagined. The Father gave back to me some of the moments I had missed capturing. As I watched her tiny feet push and push that swing I snapped photograph after photograph.


This afternoon allow me to encourage you. I encourage to not let a moment pass. Take nothing for granted. Your children will be grown before you are ready and the priceless moments of their childhood will have slipped into adulthood. Take time, take a minute to pause, take pictures, take mental notes, take the blessings you are being given every single day and whisper a prayer of thanksgiving. I'll cherish these photographs for a lifetime and even more than that I'll cherish the knowledge that our Father in heaven cared enough about me to not allow me to live with the regret of failing to capture it.

(Rachel, I finally got them and my heart is SMILING. I have a suspicion that they just might make yours smile too. Doesn't she look amazing!!!!)

Things that make me smile

A happy 5 year old. She's been in the best mood today. Even at her doctor's appointment. She was signing and giggling and engaging with both her doctors today. That NEVER happens. It was nice to have them see her be herself.

School breaks. I LOVE having my kids in the house. LOVE having them around. It makes me smile.

Being told that the surgeon's decided that a neuro consult WOULD NOT BE NECESSARY this evaluation period. My heart is SMILING over that little piece of news we received earlier today. We still have lots of other consults to go through, but our toughest one has always been neurology. God is allowing us to skip that piece of the puzzle this go round.

Having all our holiday decorating in place so that we can just ENJOY it all rather than scrambling around trying to get it all up. I'm so happy its Christmas!

Knowing that in a couple of days we will be sitting at my sisters house all playing rounds and rounds of chaotic, loud, hilarious board games. It makes my heart happy to spend time with our very best friends. Its a bonus that we happen to be related to those friends. Dave and I are really, really looking forward to this holiday time spent with family.

Dave. After all these years he can still make me laugh every single day. I love that guy. Really, really love him for being so great.

Christmas Carols. Traditional, recognizable carols bring a smile to my face with the first few notes. I am not a fan of new Christmas music, or re-mix's of the old traditional ones. Just give me the real deal. It makes me smile every single time.

Road trips with the kids. I am really looking forward to driving all night with Dave and the kids as we make our way toward my sisters for Thanksgiving. You can bet those carols will be playing and I will be smiling the whole time.

Wrapping gifts. I am about to pull it all out and get started this afternoon. I can't wait to wrap that hideous, orange dinosaur for our baby girl. I'm smiling just thinking about it. By bedtime there should be beautifully wrapped, coordinated gifts sitting under the tree. That makes me smile. (Rachel and LouAnn, its all about the presentation, right? ...I'm just sayin:)

This feeling

I sit here tonight staring at the reflection of the tree lights in the window. I can hear the carols playing in Ashley Kate's room and I smile at the memory I just stored of her tiny self, rosy cheeks, candy cane nightie, and blue dinosaur all snuggled up underneath her quilts. Blake just walked past me and told me goodnight and as he stepped into the hallway I heard him say, "I love you, mom." Down the hall my beautiful Allison is trying to sneak in one last chapter of the book she is reading before being asked to turn out her lights. I can hear Dave laughing out loud as he watches an episode of Everybody Loves Raymond that I know we have seen at least a dozen times. My heart is full of this feeling that I find hard to describe. Tears sit on the brims of my eyelids and I'm not sure why they are there.

As the smell of a Yankee Christmas Cookie warmer mixes with the smell of the freshly baked pumpkin seeds the boys made tonight fills the house I feel so overcome by all that surrounds me. This life, this place, this family...this amazing moment in time...I never want it to pass. If I could freeze this moment that I am experiencing now and never let it go I would be content for the rest of my life. I can't describe it...I'm just so...at...peace.

At this time life is good. It is precious. It is so, so blessed. And yet...there are struggles lurking just around the corner. I know they are coming. I know we won't have the opportunity to avoid them. If I allow the knowledge of that to overtake me then it steals from me all that there is to enjoy.

Our family is on the verge of breaking. My daughter is dying. My children will be left for months on end without a mom in the home to keep it running. My husband will be torn between pieces of his heart scattered across the miles and the responsibilities that come with being a husband and a father. Responsibilities that force him to keep keeping on as if life wasn't slipping out of control. None of these things have escaped me. No they are there, under my fragile surface, and if I'm not careful they render me helpless in the moments I allow them to come to the forefront of my thoughts.

But...I choose not to dwell tonight on the pain in this home. I would rather just sit and find the peace that fills my soul as I try and convey my grateful heart to the One who has given me so very much to be thankful for tonight. My tears are falling, they have slipped from the brim of my lids down onto my cheeks and they are tears of joy and thanksgiving. How easily they could switch from those of contentment to those of pain. I'm trying not allow that to happen, but still the pain is in my heart. Its there and He knows that it is. I suppose I'll allow the Father to sort through the tears and figure out from which each one comes.

I just don't want this moment to pass. I don't ever want to wake up and not be here with our sweet girl in her bed down the hall. I don't want to open my eyes one morning and see the lights of the PICU and hear the laughter from the nurses station. I don't want it anymore. I want the peace of this night, this feeling to last forever for us and since I know that it can't I'm trying to capture it in these words so that on that morning when I do open my eyes to those sights and sounds I can look back and read this entry and allow the words to take me back to this place. To this feeling.

At a glance

I sat early this morning trying to organize my thoughts and figure out which direction I was headed today and realized how blessed I am to be here during this time. The outcome we were left with this summer is not what we had prayed for and the upcoming destination is one we had never hoped to visit again, but this in between is nothing short of miraculous. God is blessing me with some of the busiest, most enjoyable times here in our home with the kids.

I'm going to run through this week at a glance and share with you just how much I am being blessed to be a part of. Coming home was the best decision we ever made. Not just for Ashley Kate, but also for Blake and Allie.

Saturday - Two baseball games, Dallas

Sunday - Two baseball games, Dallas - Club Volleyball try out, Longview

Monday - Two basketball practices

Tuesday - One basketball practice - One Soccer practice

Wednesday - Two basketball practices

Thursday - One school play - One basketball practice - One basketball game- Nacogdoches

Friday - One basketball game- Lufkin - Travel to Dallas

Saturday - Three soccer games- Dallas

Sunday - Club Volleyball Longview

I love every single moment of this crazy life and crazy schedule. LOVE IT. Add taking care of Ashley Kate to the mix and our life is abundantly blessed. I am exhausted at the end of it all, but I am happy. My kids are growing so fast and I enjoy each one of them and their talents and all that they offer to our family so very much. I spend much of my day on the phone working on Omegavin, Insurance, and transplant related stuff. The rest of my days is spent on the floor reading, playing, and cuddling Ashley Kate. There are lots of dressing changes, IV lines, pumps, and bag drainings going on too. Dave and I don't find lots of time to spend together, but we are blessed to spend most of his lunch hours with each other. On occasion we go to dinner and talk about the "bigger" issues that we choose not to discuss at home around our kids.

This week we were blessed by one of our patients who gifted us with a swivel car seat. This little gift is going to make loading Ash in and out of the car much, much easier on all of us. The physical strain of lifting and carrying Ash is felt by us all. I'm almost to the point of having to lift her into her wheelchair, push her out to the car in it, then lift her into the car. Not there yet, but considering if it would make life easier on us both.

Ashley Kate is happy most days. She has some bad days thrown in and there are always medical issues to be dealt with, but she doesn't know life should be any different than it is. She tires easily and I know that is just part of the livers struggle. The most important thing is that she is home. She knows she is and it makes all the difference in the world. The life in her eyes shines when she is here compared to the way they look when she is in the hospital. I am so grateful to have this time with her. So grateful.

At a glance I would have to say that our life is blessed. It really is. I try so very hard not to think about the future. It will be here sooner than I would like so I'm trying not to concentrate on what it holds for us. I'm just enjoying the time we've been given. To top it all off its Christmas and that makes me smile all the more!

Systems in Place

It takes a support system to get through a life like ours with Ashley Kate. For Dave and I to pull this off on our own would be impossible. Truly impossible. When Ash is well, stable, and has organs we do our very best to do just that. On our own. She goes with us and we keep the family together for most things. If I need to grocery shop and such I try and do so when he is home and able to sit with Ash. We travel in the RV to the kids ballgames so that she can be with us and we don't expose her to "germy" hotel rooms and such. We take turns sitting with her and watching the games. When the weather is acceptable she LOVES to ride in her chair or her wagon as we walk around and around the fields and watch the older kids play. When she's well life is easier. Its in those times, like now, when she is not well that life becomes difficult to manage unless you have some form of help.

We don't have nursing care in our home. We don't have any forms of respite care. We do most of this life on our own. We like it that way. Raising our kids. Raising our family.

Since ex-plant, Ash gets out of the house very little. I mean, we take her, but she resides in the car or the RV most of the time. She's happy like that as long as the car is moving. On occasion, while wearing a mask, in the less busy times of the day, I have taken her into a few places with me. She enjoys the freedom of being out and about and is excellent at keeping a mask on her face.

The first two months we were home, my mom came to help out. She sat with Ash for us during Allie's entire volleyball season allowing us to enjoy, support, and be there for Allie. Again, she traveled with us on the weekends in the RV and sat with Ash while we enjoyed watching and supporting Blake at his baseball tournaments. We are so committed to being present for the older kids while I am here. Its of the utmost importance to us for me to be present with them.
Before my mom left we made sure we had the upcoming weekends covered.

Sometimes the systems you set in place fail. When that happens life gets a little difficult to manage. This weekend is going to be rough. The system we were depending on fell through and Dave will be out of town working all weekend. I'm not so sure how I'm going to pull off the weekend. Its a little distressing at the moment. Blake and I are going to do our best to figure it all out, but its getting more and more complicated.

Its not easy for us to ask for help. Its not something that comes easily to either of us. We are so very willing to help out anyone at anytime and never think twice about it, but when it comes to us depending on others its not a natural occurrence for us. This is one of the areas that God has been actively working on us with over the course of Ashley's life.

As we try and make plans for the transplant re-evaluation we are stuck with the dilemma of where Blake and Allie will be. They will be out of school and are old enough to stay at home during the day, but I would never leave them over night. Not for one night and especially not for 4 or 5. They both have commitments here in town and are unable to travel to Omaha with us that week. At this point the system we were counting on didn't work out once again and we are left in a huge bind. Its not as if the re-evaluation is something we can keep moving around. Its a pretty important week and we need to try and get it nailed down and over with. I'm just a little stressed trying to come up with a new system today. Your prayers for a clear answer would be greatly appreciated. If something doesn't work out then we will be forced to move around the dates once again. Its a holiday week and its not as if we can call on our friends and ask them to alter their holiday plans to take care of our kids. Any other time of the year I would force myself to do so. Dave could stay behind and keep the older kids, but I think its extremely important to have him there making life and death decisions for our daughter together. I just don't know.

Life is so much easier to navigate through when our 5 year old has functioning organ systems. It truly is! The constant "threat" of having to drop and run at any moment is overwhelming as is the knowledge of leaving two kids behind as I care for the other.

Maybe this is not the right time for re-eval? Maybe this is the Father's way of saying, not now, not yet? I don't know. I'm searching trying to get it all worked out. Somehow it will.

I share this post with you not so I can complain but so that you might pray for us to know what direction to go. I thought we had nailed it down, but last night it fell apart. This seemed like the perfect time to go because of the time out of the office for the holidays. Dave would be missing work most of those days anyway. I'm starting to think I was wrong.

One of my favorites

Tonight will be written into my heart as one of my favorites to carry with me into the days when Ashley Kate and I will be living apart from the family.

Nothing special took place, which made it all the more special.

Lights twinkling on the tree. Working on a Christmas puzzle in the family room. Watching Elf with Dave and all three kids. Listening to Ashley Kate giggle as the jack in the boxes popped up and scared Buddy. They scared her too each time they popped out, but the anticipation was so great it caused her to giggle. Dinner in the oven. Blake falling asleep on the couch. Allie snuggled under a blanket. Ashley on her daddy's lap. It was just us being us and enjoying the time we are being blessed with.

It was definitely a favorite that I will be filing away to take with me. I hope to make a memory every single day with these amazing people. Life hurts right now. It hurts really, really bad. Still I know that experiencing the pain is making the pleasure all the more precious to my heart.
Feeling blessed tonight.

Plans

Ive been on the phone with transplant this morning making plans. Plans for the re evaluation process. There is a knot in the pit of my stomach every single time I have to talk with transplant. The feelings are so very hard to get anyone to understand. On one hand my heart is so full of appreciation and gratitude towards the team who time and time again works to give my daughter the opportunity to live. On the other hand transplant represents the hardest, loneliest, scariest, toughest days of her life and ours. My hesitation to dial or answer that 402 area code has nothing to do with the people, it has everything to do with the separation of our family. I know you don't understand. This is one of the areas where we are attacked most by readers. Its ok that people don't get what I'm trying to say. I don't want you to get it. If you do then it means you are probably living a similar life to ours.

So... the tentative plan(if schedules permit on the other end) is that Ashley and I will fly out early the week after Christmas. Probably Monday evening the 27th. Ash will be in interventional radiology for the vascular study sometime on Tuesday the 28th. We will continue the evaluation process on Wednesday and meet with the transplant surgeon on Thursday to talk about the findings and the teams decision regarding listing or not. Our hope was to be able to get everything done between Wednesday and Friday, allowing Dave to work the first of the week and still be present for the process. Unfortunately transplant is closed on Friday for the holiday. This is disappointing. Dave really has to be in our office on Monday and Tuesday, but he needs to be at the evaluation also. This is one of those times when I need the real world to take a break from spinning, pause, and then pick back up when Ashley's life has settled back down. As we all know real life keeps going no matter what the crisis is that pops up. Its that way for all of us. So we will be attempting to have him fly in Tuesday night or Wednesday morning instead. That's an extra flight that we were really hoping not to have.

Between now and then we hope to breathe deeply, laugh hard, and live fully. Its the best we can do. I have no idea what the future holds for our family. I have no idea if they will list. I have no idea if organs will ever become available. I have no idea when or for how long Ashley and I will be living in the hospital away from the family. I just have no idea. Its extremely important for Dave and I to be at every activity, every ball game, every everything of Blake and Allisons over the next 6 or 7 weeks because the one thing we do know is that this time together isn't going to last forever.

Until then...I plan to to take today to work on the outside holiday decorations. Hanging wreaths garlands, and lighting trees on the front walk. I don't think I can hang the lights on the roof tops, but I Ash and I can do the rest. I'm going to buckle her in her chair and let her drive around the yard while I get to work. Thats the plan. This is one plan that makes us smile.

Hard to believe

Blake pitching for the Warhawks Nov. 14, 2010

This afternoon Dave took Blake down to get his driver's permit. UNBELIEVABLE! The year he was born Dave and I were only 21 years old and had been married for 2 and 1/2 years. We kind of grew up along side of him. I still remember the day we loaded him up in the car to take him home for the first time. Remember it like it was yesterday. I am stunned when I look at this young man. He is an amazing guy and I love being his mom. To think that I will be the passenger and he will be the driver for the next year is so hard to believe. What happened to those days of buckling him in the car seat? Where has the time gone? To my young friends...if I could give you any parenting advice it would be this...treasure the everyday, the nothing special, the mundane acts of mothering. It goes so quickly and all too soon enough your sons will be driving you to the store. Wish us luck!

In the Face of Decisions

This morning I feel the burden of the decisions before us heavier than I prefer it to be. I lay awake in the bed until the early morning hours with the weight of what has transpired over the last 5 years and what lies ahead of us this next year. Its not often that I even allow myself to reflect on what our decisions in the past have been. The what if we did this instead is much too big of a burden and I can't change where we are today anyway. I guess my heart is just hurting as we face such uncertainty and such challenges. How I wish I could rewind and be back to where we were or fast forward and be past what we are facing. In all honesty I don't know what to do. I remember so clearly the words of Dr. G and much they hurt my heart the day she said to me, "Go home and talk. Really talk. Then decide. You think you know what your decisions are today, but take her home and then decide." I didn't get it then, but I think I get it now.

How do I take this child, this child who has come so far, fought so hard, and finally is back to a place of contentment, happiness, and "stability"(i use that term lightly) and put her through what will be a nightmare that I hope one day on the other side we will all wake up from? I am so torn. Torn between what I know we have to do and what I so desperately want to spare her and our family from. My heart hurts deeper at this point in her life than it ever has before and yet it leaps with joy as I listen to her playing in the other room this very moment. How can I hurt so much and be so happy at the same time? It is a constant state of turmoil that lies underneath my surface.

At one point this weekend I watched the twinkle in her eyes, the smile on her face, and the joy that radiated from her and audibly spoke what I was thinking, "I can't imagine life without her here". A thought I have hundreds of times a day, yet never voice for the sound of it causes me to shutter. This little girl is so wonderful. So full of life. So full of joy. We love her deeply. Deeper than I ever knew possible. Its a love that I feel physically as I pick her up, hold her close, kiss her forehead, and breathe her in. I feel her. She is such a part of me.

Its time. The teams awaits our call. The insurance approval came in late last week and now we choose the date for which we wish to return. Currently the ball is on our court and we are trying to decide at which point we toss it back to them. What is best? What is best for Ashley? I thought this is what I was waiting for, but now that it is here I look at her this morning and the tears roll down my cheeks. Do I do this to our baby? Again? Do we choose this for her? If we don't she will die. If we do she will suffer for a while and still may ultimately lose the fight. In between those two scenarios we have a very small chance that she will survive and live yet again the life she loves so very much. There really is no decision to be made. We KNOW we are going to try and get the team to transplant again. We KNOW we can't look at our 5 year old and stop fighting for her life. I just don't know WHEN we want the fight to begin. If you could see her today you might mistake her for being "ok". Its a deceptive place we are stranded in. She is not "ok", but she is happy. She is not scared. She knows she is safe. At which point do I take those VERY IMPORTANT things from her? Today? Next week? Next month? I don't know.

Ashley Kate is much, much stronger than she was the day I carried her body back into our home. There were nights that I sat up all night for fear of her slipping from us while we slept. She was so fragile, as were we. Today, its not that she is not fragile, its that she has adapted and adjusted and so have we. Her life is very, very different than it was before July of this year and yet it is very much the same because she is home. She is where we all want her to be. She is not growing up inside of a hospital room. She is living to the best of her ability the life God has given to her.

Still, we have no idea if transplant is even an option for her. That is what our return trip will decide. If it is possible. If it is possible the chance for success is much, much smaller than it was the first time around simply because there are no central access points left in her tiny body in which to support her life through as she recovers. Its kind of like a one shot deal. One infection could prove to take her life without a place to go back in and try and save it. This reality is paralyzing to me. I've seen the recovery process. I've sat next to her bed and watched it for months and months on end. It will be miraculous for our daughter to come out on the other side of another transplant. Really, really miraculous.

I'm afraid. Afraid of evaluation. Afraid of the venous study. Afraid of interventional radiology. Afraid of anesthesia with her new anatomy. Afraid of mistakes being repeated that could cause her to be hospitalized during the evaluation process. Afraid of our transplant teams decision. If they tell us it can't be done what will we do? If they tell us it can be done what will we do?

After this many years I have learned who I trust at UNMC and I have learned whom I don't. How are we to get through this nightmare again knowing everything we know? We are not naive this time. We know too much. It is going to be a very, very rough ride. It scares me.

We are currently looking at schedules and trying to coordinate when Dave and I can go to Omaha with our little one. Our hope and prayer is to keep her outpatient through the process and to return home with her in a few short days. There isn't much to decide. Either they can create line access above her diaphragm making transplant a possibility or they can't. One test. One study. One outcome.

Facing these decisions and the ones in the weeks and months ahead is our biggest challenge as parents so far. We don't take them lightly. We are seeking answers and praying that in the end our choices will have been the right ones. We desperately need the Father to orchestrate and lead the entire process from the timing of the evaluation to the timing of transplant. We are powerless to make it all ok for our children and our family. It is a helpless feeling when you realize that no matter what we decide it is His decisions for us that will count. At the same time it is comforting to know how much He loves us and that He is working on our behalf.

Prayers

Update: Kylie's transplanted bowel was explanted. She came through the surgery and I received a beautiful, peaceful, picture of her over the phone as she lay resting in her room. She has a long journey ahead of her. I never dreamed my sweet friend would be traveling such a similar path to ours. Our girls have different issues, but ultimately they both need to be re-listed, receive the call for organs, and survive yet another difficult bowel transplant. There are things in this life that I will never understand and the suffering of our little girls is definitely one of them.

Her website is caringbridge.org/visit/kyliewalleser. You can leave messages for Joan there.


I won't disclose any details because I have not yet spoken with Joan, but I am asking for prayers for Kylie all night. Please, please, please pray for my friend and her tiny girl. They need our prayers. Its been a very, very rough day for them and its not over yet. Kylie is a tough little girl. She and Ashley Kate are so very much alike. They fight so hard and they endure so much.

Kylie holds a very special place in mine and David's hearts. She means so much to us. Your prayers are greatly appreciated. I'll share more when I can, but for now please pray her through this.

UGGGHHHH!!!

I knew this wouldn't be easy, but I honestly did not imagine we would be trying for weeks and weeks and weeks to get Ash what she needs.

I also didn't imagine how hard it would be once our IND# was issued from the FDA.

I also didn't imagine that someone with the willingness to self pay would have people's heads spinning.

I also didn't imagine that no one has ever heard of a family self paying for this drug when insurance refuses too.

I also didn't imagine that once the number was granted, and the FDA was on board, that we would have to continue fighting red tape.

I just didn't imagine it would be this hard. I knew it wouldn't be easy, but I assumed we had crossed the biggest hurdle.

I was mistaken.

The requirements are that she be hospitalized for the first 48 hours and we are all on board with that. The physicians, hospital, and us. The company is telling me this morning that they are not allowed to dose a drug to me through home health and then allow me to take it into the hospital. So...nobody knows what to do. I find this very interesting because Ash is such a complicated patient that whenever she does go into the hospital 9 times out of 10 the hospitals don't have what she needs,( supplies, feeds, or meds) and so Dave and I have been asked to bring in our own supplies which we have happily done her entire life. Yesterday, when I left the doctor's office the plan was to have the Omegaven delivered to our home, call our physician, admit Ash in Shreveport, and then infuse the first two doses, discharge and come home.

So...this is not the end. Its really just the beginning of the fight for Omegaven.

They are sending our case to the heads of their company and trying to figure out what to do. I should hear from them with their decisions sometime on Monday.

My goal? To do everything humanly possible to give Ash the best life possible. We firmly believe Omegaven is the key to doing this. With or without re-transplant.

Common Bond

The transplant world is a different kind of place. Few live there, even fewer live in the parts of it that include bowel transplant. We kind of all form a common bond around each other. Its funny because people whom you may have never even met feel as though they are family. There is just something about being one of those moms who have stood in that place, sat by that bed, and prayed through the most intense of tears, that binds you together. In our journey we have had the privilege of becoming real life friends with a few of the other families. Its those kind of friendships that you treasure.

This morning my dear friend Joan is standing by the bed of her sweet Kylie. They are doing another scope around 10am, and I am asking you for your prayers. She stands in the place that brought us to where we are today with Ashley Kate. Kylie is in rejection. Has been for the last couple of weeks. They have treated it and are now going in to look for signs of hope. Hope that says, this bowel is recovering, it is healing, it is going to be ok. I know this can happen. It happened twice before for our Ashley. I also know it may not happen. As you all know it didn't for her this last time. Joan is an amazing mommy. Truly an amazing person. It is tearing my heart out to watch her endure this battle with her tiny girl. We visited last night and her words pierced my heart so deeply because I too had felt the gravity of them. I knew firsthand how very difficult this time in for her and I knew how very difficult it is to hold on to whatever hope your can during it.

Please pause this moment and pray for healing for Kylie. I know our God is able to heal. He chose not to heal Ashley Kate and I will never understand His reasons for that. I'm just doing all I can to trust that He knew things I did not know, He was aware of something that I was not and in that knowledge has led us down this road instead. I have to believe that. As much as I am clinging to that truth in my life I am clinging to the truth that He may indeed spare Kylie ex-plant and allow healing in her body.

Thank you so much for praying. I've witnessed it many, many times before and I know that you will stand in the gap for us and our friends again. You can follow her story over at Caring Bridge. Her name is Kylie Walleser. Thank you.

GOOD NEWS

Dave just got off the phone with the FDA and they are ready to issue Ashley's number for compassionate use of Omegaven!

They have had the number since Friday and have been leaving messages daily with the staff at our surgeon's office. The contact at the FDA told Dave that she will release the number to our surgeon immediately as soon as he gets on the phone with her.

Step 1 was obtaining the number. Now we need to figure out how to get it and how we are going to pay for it. No matter what it takes we are committed to giving Ashley Kate the very best chance at a successful re-transplant and life. We believe Omegaven will help her liver stabilize while we wait for organs and give her more time. If we are denied re-transplant then we KNOW she will have the longest and best quality of life while being TPN dependant. Its a huge accomplishment to be at this point.

We know a home health company out of Houston who has Omegaven and we will begin the process of trying to switch our services over to them as soon as I get back from her doctor's appointment tomorrow.

Its a little scary starting on an experimental drug. We know her liver will get worse before it gets better. That fact is well documented, but we have looked over case study after case study and read many, many, many testimonials of parents whose children's bilirubin levels have stabilized within a month or so on Omegaven. Our hope is to have those results for Ashley Kate. To see her eyes become clear again will be an amazing day.

Its a step in the right direction for us. We have been so blessed today with this news. Thank you, thank you, thank you for praying us to this place.

Its been a good day. Yesterday was a little rough(Ash and I were in an accident and the front of our car is all crunched:( ) So this news has been such a blessing!

Growing Up

Its amazing to watch my children grow up.

Alarms set at 5:45 so he can get up in time to work out at the gym and make it to driver's ed before school.

Hair dryer, lip gloss, and mascara scattered across her bathroom counter each morning.

Tiny hands that use more apps on her daddy's IPhone than he does.

I spent the weekend missing my 15 year old as he went from one activity with friends to the next only to show up last night around 11 begging not to attend school this morning because he was SOOO exhausted from his weekend. He went to school this morning. I know I'm old because I'm the one that sent him without a tear in my eye regardless of his exhaustion! Laughing at my 12 year old beauty and her sense of humor. I love this girl! Dave I had a conversation yesterday about how very fun it was to parent this girl. What began as hard work with one of the most stubborn toddlers to ever walk this earth has turned into such a joy. Allie B. is one amazing girl. So beautiful, talented, athletic, smart, and fun loving. Couldn't ask for a better young lady. Watching our baby proving more and more to us that shes not so much of a baby. I watched her play on that phone all weekend and it struck me that if only they could see how very amazing and intelligent this little one is that a neurology consult wouldn't even be necessary for eval. Who cares at this point if she's caught up with her peers or if she will ever stack those dang blocks on command. I see her learn more and more about her world every single day and at this place in our journey I have QUIT caring about milestones, markers, evaluations. Its so much more about LIVING and so much less about what the "books" say she is or isn't.

My kids are growing up and its a mixed bag. There are moments when I long for them to stay little forever, and then there are those moments that the excitement of the young people they are becoming overwhelms my heart. I miss a lot, but look forward to so much more. Funny how time keeps on going.

As I prepare for Christmas I am being reminded that they are not so little anymore. The fun of shopping for them and finding that perfect gift is dwindling as they refer me to websites for things they need for this or that. Not too many surprises landing under our tree this year. Catchers gear and gloves need to be replaced and thats all Blake has asked for. New boots for Allie is the only thing she'd like to have. Not much fun anymore, but then there is our baby.

The sweet girl who doesn't know the difference between today, tomorrow, or Christmas. Our littlest one is proving to be more fun this year than ever before. A toy catalog comes in the mail and it belongs to her. She flips pages and points that tiny finger until it lands in the same place every single day. She makes us giggle as she shoves that paper in our hands and signs "please, please, please, I want." You should see the wadded mess of papers she holds on to every single day. She threatens tears with sign when I say, "maybe for Christmas, not today". She has no idea what or when Christmas is, but she knows when I say not today it means I'm not handing her that GIANT, ORANGE, PLASTIC DINOSAUR. Can you even imagine my beautiful little girl loving on that ENORMOUS, HIDEOUS thing? Well, come Christmas morning you will be able to see it for yourself when I post a picture of her with it. Her daddy is threatening to get it for her now, but I'm insisting on it waiting till Christmas. My friends are arguing with me and siding with her daddy wanting her to enjoy it today not knowing what tomorrow will hold, but I so want to see her smile on Christmas morning as she pulls the paper of that ugly toy. I'm wrapping it up today just as soon as I get it back to the house! The funniest thing about Ash and the toys she loves is that if they make the slightest of sounds, play music or light up then she will never play with them again. She is TERRIFIED of all of those things coming from a toy or book. So...we won't be putting batteries in her toys. That way they can stay silent and play right along next to her for as long as she wants. Her other requests from that catalog? No baby dolls, stuffed animals, or princess things. Nope, not for our girl. A dinosaur, a farm, a train, and an alligator. Honestly, does she not realize that her momma works hard at making her girly, frilly, and sweet? What does she not understand about who she is being raised by?

It was a good weekend. She felt good for most of it. When shes feels good its a good day for all of us. The medical issues and struggles haven't gone away and aren't any better, but we are enjoying our time here at home with Ash. She loves to have the carols playing, the lights twinkling, and frosty on the TV. I love watching her enjoy it all. I feel so blessed every single day. We don't cry that much anymore. I think we are all so focused on today and not looking at tomorrow that we have gotten good at not talking transplant and such. We don't spend our time dwelling on what we know is coming. Outside of my planning and packing for the event(which I keep hidden in her closet) I try to enjoy the now and not worry about the then.

Soccer season is winding down for Allie. One more tournament as a guest player and then nothing until this spring. Basketball is in season and I'm thrilled about that. She's considering trying out for a club volleyball team for the winter. Blake is still playing a little baseball. Not enough for him, but at least there are two more tournaments on the schedule. This weekend and then the first in December then he finishes up. High school ball should be just around the corner. Dave and I started building Ashley's library cabinets in the play room hoping to finish them this next week or two. Its one of the final steps in completing our vision for her therapy/play room. I'm excited about them. Other than all of that, we aren't doing much of anything else. Hope your homes are getting all ready for the upcoming holidays. Ours is so wonderful! I smile all day as the peace of the season floods over my soul. His timing is perfect and I know it was no accident that He allowed me to face this time in Ashley's life during this season. I need to feel the peace of His presence surrounding me and Christmas does that for me. God is good.

Long Night Ahead?

Tonight is the first night that we are attempting to let Ashley Kate sleep in her room down the hall from us. Ugh...

I know its something she needs...her routine...her bed...her room...her normal...the way it was before explant

but

I'm not so sure its what I need. Since returning home I've been able to lie down at night and stare into her beautiful face until my eyes become blurry and I drift off to sleep. I wake up several times each night and there she is...that face...inches from the edge of my bed. I smile, I laugh out loud, I cry, I pray, I stare.

You should have seen her tonight as we tucked her into bed in her own room. That smile, that twinkle in her eyes, that feeling that came over her and I saw all over her face. She's happy to be back in her own room, pointing and signing for books off the shelf, the light to be turned out and the music to be turned up so she can "listen". Its her routine. One that has been missing for months and months.

I've watched her through the night for several weeks now and she doesn't touch the line. Its what scared me the most. Her last central line. It scared me so much in the beginning that I didn't dare close my eyes. Tonight? I think I'll be doing the same. Not closing my eyes, but instead choosing to make the path up and down the hallway from my room to hers over and over again. Yep, I think there is a long night ahead of us. Wish us luck.

Recent Favorites

My heart is overwhelmed with gratitude as I scroll through the "moments" I've captured this past week or two. To be here, in our home, with these amazing people, living each minute of every single day we are given together. This is my life. Its what I do. Its why I get up out of bed every day bearing the weight of the burden on my heart. I have never been more aware of the magnitude of every single moment of this life. In a way I'm thankful for this journey because it has made us who we are. We are so different. We are so present. We are so grateful.

When I see my big kids growing up into the amazing people God has created them to be my heart swells with thanksgiving and it aches over the difference in their lives and their baby sisters. So much of this life with our sweet Ashley is about grieving along with the living. I don't think it can truly be understood unless you too are living it. Of course our hopes are high, our expectations for her are so very high, but as her mommy I also live each day with the death of so many of my dreams for her. My dreams for our "baby" have had to change through the years and they continue changing each day. At this time our dreams are simple...Live, Laugh, Love. Its all that matters. The others were never that important anyway. They were dreams of "normal", but what is more important? The simplicity of her life is amazingly beautiful and the complexity of her health status is too much for me to take in. I have adapted to the place where I am nothing other than grateful for today. This time, this minute, this breath.

Confession? I spent this morning unpacking her suitcase. How many weeks have we spent at home now? I'm not counting them because no matter how many we are given I will still feel in my heart that we needed more. Anyway, I overcame the pain, the hurt, the confusion of it all and opened that suitcase up, put away things we won't be needing next time and began packing it once again. I have dreaded this task so very much and as I sit here I'm still feeling numb over what is taking place in her life. So...it now sits in her closet filled with fresh linen, new satin pillowcases, tiny socks for her feet in the days that follow transplant, and other things I have been collecting over the weeks. Tears roll down my face at this moment. I just wanted to unpack it for good, store it away, and not face the idea of leaving with her EVER again. For some reason, one that I know I will NEVER understand this side of heaven, it is not to be. That little polka dot suitcase will remain ready to go at a moments notice as we await the decisions of our transplant team and the call for organs. Just the sight of it makes my stomach hurt. Physically I feel the pain of what lies ahead with the mere image of all that suitcase represents.

As I read from our dear friends journals to Dave over the lunch hour the words, "In a perfect world" came out of the hearts of my precious friends. To which my precious husband, Ashley's amazing daddy, replied..." I don't think it ever existed for them..." I sat for a moment and said, "for who" and he said, "That "perfect" world never existed for any of our little girls".

Not Ashley, not E______, and not K_____. I don't know why, it just never did.


So with the reality of our lives and how "unperfect" it is for my daughter I sit and thank God for the moments, the hours, the days, and all the time He is giving me with her. Life hurts, but is so blessed. My life without her in it would have never been the same. I would have missed so very much of what it means to really live.

Moments...

Good and bad. The last week has been an emotional up and down that seems to come in like waves that wash over me. One day will be amazing, the next will be not so amazing. Some days are normal, the next they become anything but normal. Instead they are our new normal. I find myself exhausted by the good and the bad. I think its the emotional strain of knowing what lies ahead. If I could forget what we are up against, if I could imagine it away, or pretend it wasn't going to happen then believe me when I say I would.

How is Ashley? I am asked daily how she is. I have my token answer knowing that everyone who asks really doesn't want or need to here anything else than "she's happy". Its an honest answer. She is happy. What else is really important in those brief run ins with others? They want to hear good news when they ask, and all I want to share is good news. There is no need to go into her current struggles, health issues, and scares. The answer seems to satisfy most and it satisfies me too.

So...how is she? Well, she's happy, but I'll share more with you guys because I know you've been around long enough to really want to know the details. Looking at Ashley's labs this week, I fear the "traffic jam" has begun. Actually I'm thankful that it has taken this long to start. When she was a baby and her liver was sick the easiest way our doctors could describe what was taking place inside her body was to use the words "traffic jam". It seems that when the liver struggled then all those systems that relied on it to do its job so that they could effectively do theirs began to get backed up. Things like, bile flow, enlarged spleen, low platelet count, etc., etc. We are noticing the effects of the sick liver in other areas at this time. Its not just a liver issue. Its lots of issues when your liver is struggling. She is also maintaining a pretty high BUN. It has been high for 4 weeks in a row. This means she is dehydrated, but other than the elevated BUN she looks as though she is not. Its been an ugly cycle of fluid loss. She of course loses fluid through her ostomy bag. She also loses fluid through her g-tube that is left to drain into a bag 24 hours a day. Then you have to add in the fluid losses from her constant vomiting. We run IV fluids round the clock in one of the lumens of her line, but we never seem to catch up. She is urinating well and her creatinine levels are still in range. They have been inching up each week and are now at the top of the range, but they are hanging in there. There is nothing that can be done other than IV fluids so an admission into the hospital would do nothing more than frighten her. The only way to rehydrate is to run fluids and we are doing that. Her constant vomiting seems to be a side effect of her new anatomy. Her stomach is unable to drain anything into her remaining few inches of small intestine. The contents of the stomach are identical in color, consistency, and odor as those of her ostomy. It is more than uncomfortable to have that backing up and exiting out her mouth and nose. It breaks our hearts to watch her struggle with something this awful. I won't go into any more detail. I think you can understand what she is vomiting by that description. Just another reason why my token answer is "she's happy".


We've had a few scares this week. Her abdomen area is not really "fit" for dressing central lines any longer. She's been left with quite a mess of incisions that intersect at all the wrong places. In addition to this problem her ileostomy is very, very close to her g-tube making the fitting of her ostomy bag almost impossible. So when you take all of these issues and combine them you sometimes have quite a mess on your hands. Her ostomy bag can not seal on the midline side of her body because there is a trench that has been left from the transplant and explant. Her central line is situated on the opposite side of this trench making it difficult to fit her tegaderm dressing. Keeping it intact and sterile is proving to be a nightmare. Twice in the last 3 days we have undressed her to find leakage from her ostomy in her central line dressings. Its so scary. Knowing the dangers of infection and the disaster that would pose for her. It has left me shaking, scared, and nauseated more than once this week. There are no good ways to fit all of these dressings on her body.
Her liver numbers have seemed to stabilize the last few weeks. Not continuing to get worse. That has allowed us to breathe deeply for a moment or two. If it remains stable then we have more time and more time is what we need. The FDA continues to drag out the Omegavin battle. We received an e-mail yesterday requesting more of the same. So we will continue sending them all they ask for and hope at some point they are compassionate enough to grant us use of the drug.

We have heard nothing about the financial approval requests that have been made. At this time we sit back and stay out of it while the financial department of transplant works with the insurance company. They will notify us when a decision has been reached. Like I've said before this is step one.

This morning we are headed over to Shreveport for her doctors appointment. I don't expect much to happen. They take a peek at her insicions, her foot(which is healing nicely:), and go over her lab work. Then we are on our way home. She enjoys the drive and I enjoy getting her dressed up to go out. She doesn't leave the house much anymore so it gives me an excuse to fix whats left of her hair(I can't even discuss this without crying so I won't. I thought about posting pictures, but it makes me cry so I won't).

Our holiday decorating is in full swing. I will share some pictures of some of the trees since so many are asking. I don't know when, but I will. I think we have decided to do some traveling on Thanksgiving and are staying home to spend Christmas here with our kids. We all talked about it and home seems to be where they all want to be. I think that sounds good to me since home is where I'll be dreaming of on those long nights in Nebraska.

The kids are as busy as ever. Allie has switched from volleyball to basketball and is still playing some soccer. She has one more season game and then an upcoming tournament as a guest player. Blake continues playing baseball and spending time with his friends(one in particular:). Dave and I are enjoying our evenings at home with all the kids. We are taking things one day at a time, soaking it all up, and doing our best not to lose sight of the moments we are being given. We know hard times and decisions are ahead of us, but we are really trying not to forget about the here and now.

Hope you all are well. I'll try to be more present here this week. We plan on being in town this weekend and that means I'll have more time to blog. Take care and God bless. Trish