Under the Apple Tree

Ashley Kate is resting in the play room. She is cuddle up on her puppy pillow underneath the apple tree that her swing hangs from. The light is streaming through the windows across her face and I sit in the next room listening to her breathe. Its very, very peaceful.

She has spent most of her week asleep. I imagine she is busy healing while she rests. Her body is busy fighting the infection. She has little to no energy right now. She did sit up for a little while in her chair first thing this morning and again sat up on the play room this afternoon for a brief period of time. Its so odd to see her be so still and to listen to the silence. I' m used to her hollering for me to help with this or that and to seeing her scoot around the room to get to whatever she would like to play with. Right now she just doesn't have the energy to do either.

I know in the past when her liver has struggled she has required a lot more rest. It always seems to make her weak. I still don't understand what is happening to the liver and no one else does either. It just seemed to get sick along with her infection this time. I can't imagine how bad things would look if she weren't on Omegaven.

Its been a very low key day for us. Just giving meds and resting. Thats about all our day has consisted of. I'm hoping that by early next week she will be feeling stronger and have a little more energy for the trip over to Shreveport. She has to be seen by her doctors over there. She's really too weak at this point to make it over, but they are insisting. I'm just so hoping this weekend brings some healing to her body.

We are drawing more labs tomorrow and hoping for good news to come our way.

Dave's parents fixed us dinner tonight. Thats a blessing. I'm really tired and had no idea what I was going to feed the kids. Her med schedule is round the clock, interrupted sleep. Thankfully my mom is here so I can get a nap during the day. Overall we are doing well. Thankful to have us all under one roof and hopeful to keep it that way for a long while.

Settled

Not much to say tonight. Actually thats not true. There is a lot I would like to say, but I won't. I'm exhausted and so I just want to let you all know that Ash is home and she is happily settled into her bed. We have seen her smile for the first time all week and even heard a giggle or two. She's tired. Weak. Worn out. BUT...she's home and she's happy.

We are going to do our best to keep putting one foot in front of the other without getting too ahead of ourselves. My hope is to string together a good day with another with another until it becomes the norm for us again.

I know you all have lots of questions. I understand that. We have lots of questions too. There just don't seem to be a lot of answers though. Ultimately what matters most to us is Ashley Kate and her well being. The best thing that could happen for her today was to bring her home. So we did. WITH FULL SUPPORT OF OUR MEDICAL TEAM AND PHYSICIANS. None of our decisions are being made independently or lightly. None of them. You don't have to understand. Its really ok. I don't expect anyone to understand. Very few people truly do and unfortunately they happen to be experiencing situations similar to ours.

I just wanted you to know she is home and happy. We are settled in for the night. Her next med is due at 4am so I'm going to go rest for a few hours. Goodnight my friends. Thank you for your support and for your presence in our lives. You are making a difference in our world and we thank you for that.

Unknowns

It seems that what is happening just doesn't really happen. I mean the treatment for this type of staph infection in a central line catheter is to simply pull out the catheter, place a peripheral line, treat the infection for a few days with IV antibiotics, and then place a new central line. To leave the infected line in place is just not done, but it is what we have to do. So we will.

This means that we are going home with the line infected, continuing to administer IV antibiotics, continuing to use the line to infuse TPN, and live life to the best of our/her ability. Its what we have to do. Its our only option currently, and perhaps forever.

We will draw a weekly blood culture along with weekly labs to see if by any chance we might ever get an all clear, but its not really expected to happen.

Ashley Kate remains in stable condition. Our hope and prayer is that she stays that way. I will be doing vitals on her every 2 hours to stay on top of her situation and if at any point she declines we will call our physicians personal phone and make arrangements to have her admitted. Its the best we can do at this time.

We are having oxygen delivered to the house tonight so while she sleeps she can be supported with a little extra help during the times she needs it.

If her echo comes back with positive vegetation on her heart valves then it really changes nothing as far as treatment goes. We will continue doing what we are currently doing. It is unknown at this time if it changes transplant opportunities for us.


We could continue to stay inpatient, but after discussing her status with our physician he is in full agreement that she could live here in this hospital, in Shreveport at the hospital, in Omaha at the hospital, or at home during this course. We both choose home for her.

We are blessed to be supported and surrounded with a staff who wants the very best life for Ashley Kate. Her physician goes above and beyond to ensure she is being given every opportunity to live her life in her home. There is no price that can be placed on this.

Ashley is sleeping alot. She's tired. Her body is fighting an ugly infection. Her liver is acting up. Her heart is strong. Lungs are clear. She is temperature free. She's having no emesis. Her third spacing is being remedied. Overall she is as good as she can be at this time. Our hope is that she becomes happy again once she is home and settled into her favorite room underneath her apple tree.

It us unknown what is going to happen with her liver. We can simply wait and see what course it takes.

We have asked transplant for direction, ideas, courses of treatment, input. They currently have none but we are talking to them daily.

I want to be clear. Ashley is NOT dying today. Ashley is NOT dying tomorrow. Only God knows the moment that she will take her last breath. Personally I look at my daughter and I believe she has a lot of living left to do. She's just got an infection that is being stubborn. Please continue to pray and believe that she will get through this. We certainly do.

The discussion came up again this afternoon about having a DNR in place so the staff will know our wishes. Those letters are not in our vocabulary. Not now and probably not ever. Ashley is a fighter and guess what...so is her mommy and daddy. Funny how God put us together, huh?

I'm tired. Still calm and very optimistic. Ashley Kate is beautiful and when she opens her eyes and sees she is in her home tonight I expect a smile will creep across her sleepy face.

This is the same infection she contracted, the same exact bug, the day the line was placed in Nebraska. It is a hospital acquired bug. Not what we had planned on happening, but it has. The best we can do is keep fighting it so that we can give her the opportunity to be listed for transplant and hence the opportunity to grow up.

There are a lot of unknowns surrounding us at this time in our lives. The one thing I do know is that Ash is going home and she will be surrounded by all things familiar to her. She loves home. We do too.

Thank you for your kind words, your prayers, and your support. Thank you so very much.

Again...and...Again

Blood cultures returned positive...again.

Bilirubin climbed...again.


Both are disappointing, but not surprising.


I'm relatively calm about it all. Seems surreal at this point. A life threatening bug is growing inside of my daughters "life line" and there is nothing that can be done about it. Huh...what does that mean? I really don't know. I really don't. Do we stay in the hospital or go home? I don't know. I don't think anybody knows what to do with us at this time. Nothing can be done in Longview, Shreveport, or Omaha that isn't currently being done. Treat it with antibiotics and hope that it will eventually clear. All three destinations have the same course of treatment available. Pull the line. It can't be done and they as well as we know that it can't be done. What do you do when the only sure treatment steals the opportunity to grow up right out from underneath her feet? I wish somebody knew.

Her liver? Wow. That's all I can say. Wow. Not sure what this is going to do to her quality of life but I'm pretty sure that if it doesn't start to reverse itself then its not going to add to it.

I'm calm. Maybe a little numb.

That's about it.

My phone

It rang and rang and rang today. Calls came in from everywhere. Everywhere that is that has a front row seat in Ashley Kate's care. Omaha, Houston, Shreveport. Yup, all three. Once our "weekly" labs were sent to them(today was our regular lab day even though we've been taking daily labs for the last 6 or so) they all took notice and made calls. What am I supposed to say? Yes, I saw the culture results. Yes, I know she has a very stubborn staph infection. Yes, I know she needs an echo. Yes, I know her liver is sick. Yes, I am aware of what her lab values are. Yes, she is in the hospital. Yes, I have talked to transplant. Yes, I know we CAN NOT have her central line removed. Yes, yes, yes, yes, yes. I get it. I really do. I would venture to say that I GET it more than anyone. Its all I think about. It consumes my thoughts. Awake or asleep. I SO GET IT!

On the other side of all of this I would like to report that Ashley's vital signs ALL remain stable. Almost text book perfect type of stable. Its all so crazy.

The scariest thing is( I mean if it can get more frightening then having her last central line colonized with a staph infection) is the reaction her liver is having to this infection. It has every one concerned, but yet NO ONE has an idea of what can be done about it. As far as I have been told nothing can be done. We will just have to wait and see if it turns around and begins to heal. If it does not I have no idea what we will do.

She did have an echo done this afternoon. I stared at the screen for awhile and it was beginning to make me crazy and so I put my focus and my attention on Ashley's face. I held her hand and talked to her about what a big girl she was and how still she was being for us. I let her know I was proud of her again and again and again. I have no idea what if anything was seen on the echo. I didn't even ask. I figured one more day of not knowing was one more day of having nothing knew to worry about. I know I'll hear the results sometime tomorrow. I've got enough to think about tonight.

I was told in rounds today that as soon as a negative culture comes in that we are being discharged home. I didn't argue that decision. In fact I didn't say anything. I didn't know what to say. As you can see in her photos Ashley is a scary shade of orange/yellow. I've never seen her look quite this bad as far as her coloring. Still though her enzyme and function tests are proving that the liver is still functioning. Its just not functioning correctly. The general hope is that it will turn around once the staph is treated effectively. She tires easily and aches all over. Bilirubin smells awful as it seeps through your skin. Her urine glows in the dark. Her tongue is so weird looking. Her eyes leak yellow drips of fluid. Its all liver related. BUT...she is cleared for coming home as soon as that culture tells us we are effectively treating the infection. Her physician said it could happen as soon as tomorrow.

Ash lost two whole pounds today. Dave and I had her weighed tonight because we noticed a change in the size of her feet. They looked a little smaller and we were able to buckle her seat belt in the power chair around her waist tonight. We knew something had to have changed for that to be possible. I was so excited to see the two pounds of fluid loss. I can't wait to have my tiny 39lb girl back! She was 51 lbs point something tonight. Moving in the right direction.

I came home tonight. Dave and my mom are both staying with Ash tonight up at the hospital. I have added an additional 3 nights of no sleep to my running total and I'm not holding up that well. They insisted I come home to rest in our bed tonight and spend some time with the older kids. I couldn't even put up a fight. I am that tired. I will take the kids to school tomorrow and then switch places with them so Dave can go to the office and my mom can come to the house to rest a little bit.

I don't know what is going to happen from day to day. I'm just keeping up with the moment to the best of my ability. I felt encouraged today by the small amounts of progress that Ashley Kate made. I felt frustrated and frightened by all the phone calls and the level of concern in every one's voice. I know things are bad right now. I just didn't need to have it confirmed again and again and again. It made for a rough day on this mommy's heart.

FYI...I turned off my phone tonight. It needed to be charged anyway:)

Goodnight my friends. I'm going to try and get some sleep.

Today

Today Ash's weight has dropped from 53.11 lbs to 52.15 lbs. :)

Today her bilirubin climbed yet again. It is now at 23.9. :(

Today Ash's lips are blistered. :(

Today it was discovered that her tongue is as yellow as her skin. :(

Today she can't swallow. :(

Today she just drools. :(

Today she refuses even a sip of water. :(

Today we assume her throat must have some of the same blistering as her lips. :(

Today I see the effects her sick and damaged liver is having in areas of her body I never even knew were possible. :(

Today I stare at her face as she sleeps and I still am awed by her beauty. :)

Today I wish to go back in time. Even just a week or two ago so that I might run footage of her every smile, every laugh, every silly antic, every moment of feeling good, and safe, and happy. :(

Today I wonder if we will get this infection under control enough to take her back to our home. :(

Today I began thinking how much I love this gift of ours and I still after all these years can't believe He gave her to us. :)

Today is the day I hope things begin to turn around for the baby gherkin. :)

Today I have been given another opportunity to minister to my youngest daughter and I won't waste the blessing I am being handed. :)

Overall, I think that she looks better today. Maybe its because I cleaned her up a little bit, changed her bedding, gave her new p.j's to rest in? Maybe its because I just so desperately want to see a change in the right direction. I don't know what it is, but to me I think she looks better, stronger, more alive. I'm going to hang on to that.

I really want to get through this acute phase, stabilize her, and take her home. From that point we can have all those "difficult" discussions and nonsense once we are rested. At this time my mind is mush and my heart is shattered. I can't make competent decisions like this. I need some time to get us back home, some quiet moments to speak with her daddy, some evenings to seek direction and pray, to find some peace. All I can focus on right now is now. I can't even think past today. I just can't.

I want Ash's good days back and I don't want to sacrifice even one of them to time spent in hospitals, evaluations, and surgeries. I don't want to do anything until we are absolutely forced into it. I don't want to give up one single solitary minute of her happiness. I think we will know when the time is right. Its not right yet. She still has some more living to do.

Our passports came in the mail yesterday. Our vacation is scheduled for the second week of June. I have no idea if it will come to pass or not, but I'm still focused on taking her to experience a piece of the world that she can enjoy. I cried when I opened those envelopes and realized how close the trip is. My kids need this trip. They need the time away to spend together and make memories. Dave and I need to see them be carefree. We all need this before we allow our world to rest on the shaking ground of transplant again. I just want to give them this time together first.

There is so much I want to do with Ash before its time. I wanted to get her back to the beach. Even if its just one day. I want her to see the ocean again. I want her to be 6. I want to have her birthday party. I'm not ready and I don't think she is either. I just hope and pray that we have more time. We need some more time. 7 months has not been enough. I don't think it will ever be enough.

All I know to do is go with what my instincts are telling me. My gut says no. Not yet. My heart has not come to grips with it yet. I have yet to find peace about it. Until that time then I think we will take her back home and live. We will laugh. We will love on her

Today this is what my heart is saying.

It Hurts

It hurts to look at this picture I took of my children tonight. My heart is breaking. My tears are falling. My everything inside of me hurts. Why is this happening? What is doing this to my daughter?

One week ago my sweet Ashley had the most beautiful color of skin, rosy cheeks, sparkly eyes, and soft pink lips. She was tiny and petite, happy and sweet. Tonight she is glowing and not from the joy that she usually radiates. Its from a sick and injured liver that for some unknown reason is taking the biggest hit of all from this illness. NO ONE knows why it is feeling the effects of the staph infected line the way that it is.

I'm struggling within myself and fighting the guilt that accompanies being a parent to a critically ill child. I have three children. Three amazing children who all deserve to be parented. They all deserve to have a mom who is available to them. They all need me to be present for them. Friday night I chose to attend Blake's baseball game and then to travel with Allie over to Dallas for her last volleyball tournament of the season. I chose to leave my sweet Ashley behind with her daddy and do my best to be present for my older kids. My heart was torn as I fought not to be so distracted by the events taking place at home with Ash that I failed to be in the moment with Blake and Allison. Today I saw my big kids for mere moments. Trying to squeeze in the usual conversations about homework, exams, practices, school, and schedules while still really listening to what they had to share with me in our minutes together. My heart is breaking. I know our life is spinning out of control once again and that I am powerless to stop it from happening. Tomorrow I will leave Ash here at the hospital with a grandparent and I will watch Blake play ball. I will stare at my Allison as she runs around the ball park with her BFF and I will do my best to absorb every inch of those children and burn the images into my memory forever. Then I will leave that field as my big kids go back home and I will make my way back into the walls of the hospital to do my best to make up the time I will have missed with my Ashley.

There is no good way to parent in this situation. I'm just doing the best I can and feeling as though I'm falling short in every way possible while trying to pull it off. And even though I'm struggling to be everywhere at once I am SOOOO thankful to be in our home town. MORE than words can ever say. My heart knows that it can and probably will get much worse as I am forced to leave the two for the one. It was never supposed to happen this way. It wasn't. We were supposed to raise our family together. They were supposed to be given a tiny treasure of a baby sister to watch grow up and not suffer. This is killing my heart.




Ash is about the same today. Not better, but not worse and so I'm going to say it was a positive day? I guess if you can pretend her bilirubin didn't climb another 4 points in the last 24 hours and that her blood cultures didn't come back positive for more growth. If you can ignore those issues then you can say that today was a good day. So...today was a good day. She didn't really decline like most are expecting her too. She is here and I am able to pick her body up and hold it close to mine. I do have the opportunity to rub her feet and kiss her cheeks. I did get to see my big kids kiss her goodnight and tell her they love her. I did watch my husband lean into her face for an "xmo" kiss. All of that is good.

Tomorrow I will be sitting behind that fence supporting my son... I will be as excited to see Allie's new cheer uniform as she is (and probably a little bit more because I'm so proud of her)... and I will hold my Ashley's hand as she drifts in and out of sleep after a long day of healing. Somewhere in there I will probably give my husband a hug or perhaps squeeze his hand as we pass and I will be grateful we were given another day to be a family of 5. I will attempt to whisper a prayer of thanksgiving for all I am being given as I fight off the urge to stomp and scream and beg for answers from the Father Who has given me so much more than I deserve to have.

Another Positive:(

Once again all of the blood cultures have returned positive for staph. Its disappointing, but not surprising. The odds of clearing her line of this very sticky, very stubborn staph is slim to none. I'm not sure what we are going to do. I'm really not. I don't think Ash really ever had a chance with this line. It was infected from the moment she came out of the OR with it and has remained so every since. We assume it has finally become strong enough to resist the vanc since 5 full days of treatment made absolutely no difference. Her antibiotic coverage was switched last night and tomorrow we will draw blood cultures again.

Her weight has increased as well. We are now pushing one ounce shy of a 15lb weight gain. Imagine carrying an extra 15 lbs on your entire body. Her chest is heavy. Her arms are heavy. Her hands, her legs, her feet. She is so heavy it makes it painful to lie in any position. I spent the entire night shifting her trying to get some relief from the ache of it all for her. Around 4:30 this morning we gave her a dose of Tylenol and she "slept" for about 2 hours. She is currently sitting in her bed, eyes too heavy to keep open, and signing "stand up, go".

I'm still waiting on her CBC and Metabolic panels to come back. I think they plan on giving blood this morning, possibly platelets, and I'm hoping some lasix behind the blood because the last thing she needs is more volume. She had a very small response to the albumin and lasix yesterday.


Ashley did require some oxygen assistance over night. She is holding her own this morning, but just barely. The older she gets the harder it gets to keep the tubes, cannula's, etc. on her. She is not a baby anymore and she has an opinion and a very strong will. Add to that a brain injury and her lack of understanding and there is absolutely no way to make her lie still and leave it on even though she needs the help. I spent the better part of last night pinning her arms down and fighting her. Its exhausting. I asked for some blow by tubing instead and in a moment of brilliance I taped that thing on to dinosaurs neck and laid him right next to my girl. Make no mistake, she was not fooled one bit and refused to cuddle, love, or touch her beloved dinosaur. Instead she gave him the evil eye for the rest of the night. This morning since her numbers were up I removed the tubing from dinosaurs neck and she instantly picked him up, kissed him on his nose and forgave him for his treason like behavior. Oh, how I love this girl! My hope and prayer is that she can maintain her breathing independently so there will be no need to fight over a nasal cannula.

I haven't heard Ashley laugh in over a week and her smile is gone too. She is so yellow and so huge and so miserable it breaks my heart.

Lots of questions coming my way and the best thing I can say is "I don't know the answers". No one wrote a book to follow for times like this and the only way to get through is to tackle one issue at a time. That is what I'm concentrating on. I can't even consider a transplant at this time until we can get back to "normal" whatever that "normal" is going to look like.

Even in the midst of chaos and confusion I find precious, tender, ministering moments. Ashley's back and spine are taking a huge amount of the pressure from the extra weight causing her to ache all over. I was able to sit behind her on her bed and rub lotion on her back. I could feel her relax and begin to breathe slower and easier. She is beautiful and sweet and smelled delicious as the lotion masked the smell of the bilirubin that is seeping through her skin. I was thankful in that moment. Its so surreal to be thankful in a time of crisis like we are in right now. My heart is so conflicted, but still it was a sweet memory I'll have to hang on to forever. For that I am grateful.

The Plan

Since the beginning, day 1... I never, we never, Dave,Blake, Allie or I, have ever planned on losing our Ashley. It is not an option for us. We are not going to lose. We are not. I can't accept the idea that she will not be with us. I refuse to entertain it for another moment. This is not the plan for her life. It is not.

We know there are close calls. We have lived through many days when things were rocky. We have seen her go to the brink only to rise up and fight her way back. We all know it is possible, but we refuse to believe that it is probable.

I found myself sitting outside the hospital this evening in a dark parking lot and all I could think of doing was screaming, "SHE'S 5! Does anyone care? Does anyone get that? She is ONLY 5. She's not 50, she's 5 years old." Ashley Kate wants to be 5. She wants to live every single day of her 5th year. She's not quiting the fight and so we refuse to quit either. So there you have it. We won't quit fighting as long as she wants to fight. That is the plan.

This afternoon Ashley Kate weighed in at 53.8lbs. Wednesday she weighed 39lbs. I'm not sure if you can picture an extra 14+ lbs on my baby, but that is what we are trying to pull off of her. The albumin may or may not work. It may cause her to become worse. Time will tell. Personally I think her appearance is a little better. I think she is peeing off some of the fluid. Not in the amounts I had hoped, but still I think its helping.

Her liver is very sick. She is an orange yellow color. Her liver is large and swollen making it difficult to find a comfortable position. I have no idea why her liver tanked the way it did. It was functioning SO well. Her numbers had been beautiful. The train of thought is that this infection is proving to be too much for her liver to handle. I don't know exactly what that means. Again, time will tell. Its just too soon to know tonight.

She is breathing on her own. Her vital signs remain stable. We are here in the hospital tonight to be safe. We discussed it with our physician and collectively decided to monitor her for a few days here. Just to be careful since she is presenting such extreme changes in her weight and liver function. Ashley did not agree with our decision. She wants to stand up and leave. Those are her "words" not mine.

In the bigger picture I don't know what is going to happen. I know this acute illness is forcing us to make decisions sooner than we were ready too. I know it is shortening our time. I know all of that. I also know that there is something comforting about being in our home hospital. There is no panic. No "protocols" that MUST BE FOLLOWED. Things are just so calm here and I love that. There are just people from our community, from our home town, who care about our baby, that came to work today to do the job they were called to do and they are making it as easy on Ashley Kate as they can. I appreciate that. More than they will ever know. I appreciate the privacy being given to us and the small home town touches that make it easier to spend nights away from our own home. We are in Longview. Hoping to stay here and manage as long as we can. Next stop would obviously be Shreveport. Final destination Omaha if need be.

So thats the plan. At least this is as far as we have gotten with our plan. We plan on treating Ash and watching her get back to her baseline normal and then take her home. If at anytime things don't go according to that plan then I will have to re evaluate where we are and devise a new one.

So there! We are in this for the long haul. Not giving up, not taking the easy way out. We plan on taking her home and allowing her to turn 6 years old this summer.

Punched

For now all I am going to share is that we desperately NEED prayer.

Our physician is not hopeful that this infection will be cleared or treatable. She is in a very acute stage and the only confident treatment is pulling the central line. It can't be done in Ashley's case therefore he does not believe we can do anything other than support and wait.

He was very honest and told us he would need to be frank. The staff would like to have our wishes and instructions on file. You can read between the lines without me having to type those three letters.

We need miracles. I knew we would need them. Now is the time.

She is currently stable but walking a thin line and it could snap beneath our feet at any given moment.

"It will be time to have some...

hard discussions."

Speaking to transplant this morning we are encouraged that her liver is perhaps not rejecting but just very, very sick from this infection. Even though her bilirubin has climbed yet again this morning(now 18 and she is now glowing) her enzymes are coming down. That is encouraging to us all. Once she recovers from this infection it will be time to make some hard decisions and have those "hard discussions" trying to determine why her liver has taken such a hit this time. The assumption is that it will continue to get sicker and sicker until the time comes that she will not recover.

We are currently on the phone requesting an admit for an albumin infusion to be followed with lasix. The only way to pull this fluid back into the proper places is to tank up her albumin and then to allow her to pee off some of the fluid in her tissues. It is very important that we get some of the weight off of her before it transfers into the plural spaces in her lungs. We requested an admit, but our physician is leaning toward having the infusion run over 2 hours, then staying for another 2 for the lasix and some monitoring then sending us back home. We are waiting for a call back to see if we are taking her to the floor or sitting in the ER for the next 4-5 hours. Either way Ashley should be much more comfortable by this evening.

Ashley is very sick, but she is stable. I feel it is very, very important to emphasize that. It is a HUGE praise that our girl is as tough as she is. She is battling a life threatening illness as if she were a warrior and it is simply amazing to see how incredible she does this. I also want to emphasize that ALL of our decisions are being made carefully, with much thought, and complete support and communication with our teams of physicians. EVERYONE wants the best possible life for our Ashley and it is the ultimate goal of giving her quality of life that keeps us all on the same page.

Thank you my friends for your prayers. Thank you for your presence here. Thank you for your support. To know that we are loved, to know that she is loved by so many around the globe continues to bless and humble us. We are so undeserving, but extremely grateful for your kind words.

Your Hands

As I drove along the highway this evening trying so desperately to keep my tears inside and hide my fear and heartbreak from Allison Brooke this song came on the radio. I've heard it a thousand times, but today has been an especially hard day for me and the words spoke so clearly to my breaking heart.


I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away

In that first verse I found the prayer I had been praying this week except I had no words to put to my prayers. In my silent pleading with the Father this is exactly what my heart has been crying.

The chorus spoke to my heart as I drove along in the dark with my oldest daughter next to me and my youngest daughter waiting for me.

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

As the song continued on I began talking to my Heavenly Father and asking Him if this was all for real. Because honestly I will share with you that my faith has been rocked to the very core and although I do believe what I know is truth I still hurt so deeply that I find it hard to believe that He in fact does love me. That He still loves our sweet Ashley.


When You walked upon this earth
You healed the broken, lost and hurt
I know You hate to see me cry
One day You will set all things right

My heart is breaking and my world is shaken. I do cry and I do believe that one day He will make all things right. Still that knowledge does not stop my tears from falling and my heart from aching so very much that I find it hard to breathe. You can physically feel the hurt inside of our home. It is so thick, so real, that it makes it hard to keep waking up each day and going about life as though we are ok. We are not ok. Our daughter is not ok. I can run to the school, sit in carpool lanes, buy groceries at Walmart, do laundry, attend ball games, cook dinner, and tuck my kids in at night, but all of that is just going through the motions. None of it is changing the pain our family feels each and every day. We are grateful for these days we have been given, but we are still hurting. I covet your prayers. More than ever.

Ashley Kate is very sick. I have had some very difficult conversations with transplant this week and it forces me to stare down the barrel of our reality. There are so many details I don't even know how to begin. I think I will share just a few.

First and foremost Ashley Kate's central line is still infected with staph. We continue to battle the same bug that was growing in her line just two hours after it was placed. This is our third round of IV antibiotics and they are not working to kill it off. Thoughts of the line being colonized with the sticky bug are being openly shared. If frightens me to my core. The only way to remove the bug for sure would be to remove her central line. Her very last one. Its not an option.

The next area we had to discuss was if the staph has spread to her heart valves yet. It is the next location it will go if we can't rid her line of it.

Either or both of these first two issues will keep her off the transplant list. At this time its not an option for us.

Ashley began third spacing fluids two days ago. This morning she was 12lbs heavier than she was on Wednesday morning. She is not even recognizable. Her face, torso, hands, legs and feet are larger than I have ever seen. This is a result of her line infection causing her to become septic. The walls of the vessels become weak and they begin to leak fluid into the tissues of her body causing it to swell.

Her albumin level dropped to 1.5 today. Albumin is required to pull that fluid back into her blood vessels and out of her tissue.

As of Thursday morning Ashley's liver began to show signs of stress and strain. In a one week period her bilirubin went from 1.2 all the way up to 16 as of this afternoon. She is urinating bilirubin and had been crying golden tears of bili. There are two schools of thought. Either her liver is in rejection(which they will not be treating at this time since she has no bowel) or her body is wearing out from the constant battle with this line infection. Either way its not good news for us. Her clotting factors are not good and her platelets have severely dropped. All pointing to the stress her liver is currently under.

With all that is taking place inside of my Ashley's broken body her vital signs remain stable. Her heart rate is good, her fevers are gone, her oxygen sats are normal, her respiration's are a safe rate, blood pressure normal. She is uncomfortable and scared, but she is stable. Amazingly her lungs sound clear and not yet wet. Even with all the extra fluid. I don't know if they will stay this way if things continue to go down hill, but currently they sound ok.

She is being treated with IV doses of vancomycin every 8 hours for the staph infection in her line. This morning all four blood cultures again grew out positive for staph. After 12 doses the only thing that we see changed is her fevers. The bug is still active, alive and in her central line.

We are in constant contact with her physcian. We are drawing multiple labs daily keeping watch on her systems.

I don't know for sure where all of this is headed. I wish I did, but honestly I guess I may already know and wish that I didn't. I'm not sure if that makes sense to you, but it makes perfect sense in my world.

I asked my precious husband if he were scared. His answer to me was this, "No. I'm not going to look to the next moment. I'm going to live in this one. With her. Right now I am singing to her. Tonight I took her outside for a walk. I'm fixing to play angry birds with her. These are things I am grateful for in this moment. I'm not going to think about the next one." My precious friends, I will share with you that I am scared. There are no words to adequately describe the love I have for my daughter. To see my innocent baby endure such struggle is tearing my heart out.

We remain confident that she will pull through this. This time. Yet, I am still afraid that the day is coming that she will not. I see a future for my beautiful Ashley that includes joy and laughter and growth. My earnest prayer is that our Heavenly Father sees that too.

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

Not so sure...

Well, I'm not so sure what to say about Ashley Kate this morning. Some things are better, but others are SO not.

She is fever free. Her "extra" vomiting has ceased. Her vitals are all strong. That is the good.

She is HUGE. Swollen. Third spacing fluids. Not so recognizable. Has a wet cough. Feels awful. That is the bad.

This morning we are drawing more blood cultures. A full set of labs. Possibly taking her in to see her local physician. Maybe a set of chest x-rays?

Its all so confusing. What started out as a runny nose and fevers has disappeared and turned into a fluid issue that is causing a lot of trouble. She isn't receiving any more fluids than she usually requires. In fact I have decreased some of them so that she didn't have any extra volume. Its all so crazy. I have no idea where this is all headed. I have calls into the office to try and get her seen early this morning.

Its been a very trying week for us all with her becoming sick. We are all a little on edge waiting to see how its going to play out.

You know your sick when...

you postpone a doctors appointment because your to sick to travel to it.

Wow, I think this is a first for us. So crazy, but driving for an hour, strapped into a car seat behind me, and vomiting the whole way is not going to work for us today. After all her vomiting in the seat behind me is what caused our little collision a few months back. Thankfully we were in a parking lot and not on the highway, but I think I've learned enough not to attempt it when she's spewing the amount of bile she is currently. We are re-scheduling our Shreveport appointments for next week or so. Surely things are going to turn around by then.

I had really hoped that with a few doses of her antibiotic in her that things would look a little better this morning. I was wrong. We may not have the right one on board, but won't know until sensitivities are in. She is on vanc, but so far no changes in her condition. Add a bloody nose to the mix that bled most of the night and again this morning and her pile of laundry in the bedroom looks as though I performed surgery in her room last night. I could keep the wash going for the next 24 hours straight and never catch up. She has soiled every single blanket she owns and if you know anything about me then you know she has a LOT of bedding. I'm out of stain remover and there is no hope of making it to the store today so our pile of bedding and towels is going to keep growing until tonight when Dave makes it in.

This morning I feel as though I haven't slept in a week. Its only been three nights, but convincing my eyes of that isn't going so well. My friends will understand how tired I am when I share that my eye twitch is back. Yup, thats how long its been since I've slept for any length of time. Too long. Tonight Dave is on duty and I can't wait! I'm going to go to bed as soon as I get back from watching Allie run and I'm not getting up until some one makes me. I'm soooo looking forward to that!

More than that though I'm looking forward to Ash kicking this thing and having a day free of fevers so that she can actually feel like smiling again.

Exhaustion

It happens to the best of us. I am officially exhausted with these stupid line infections. I don't know what it is about having to add in the administering of IV medications to her other cares, but they always seem to put me over the top. I'm just tired. Its not like I get to work a 12 hour shift and then go home for a full 6 or 8 hours of sleep. I'm on 24 hours a day when Ash is needing IV meds and it wears me out.

So we have 4 IV pumps running, vanc medication balls, a drain bag on her g-tube, an ostomy, line dressings, constant vomiting and an endless pile of laundry from the leaks, the bile, and the vomit.

Anytime I get this tired the emotional strain of our life seems to flood over me and the tears and desperation and helplessness seem to envelope me. I can't stop any of this. I can't change this. I can't keep her well. I can't spare her transplant. I can't do anything about the many things that are going wrong in her body.

All I can do is take care of my baby to the best of my ability, hold her close, rock her, wipe her tears, sing her favorite songs, clean her up, pray for her, and love on her. This precious, precious girl of mine is so worth the sleepless nights and the piles and piles of bile stained laundry. As the tears roll down both of our cheeks I remind myself that many of my dear friends would trade places with me in a moment to have their babies back in their arms. I know they would give anything to have one more night to administer IV meds, hang TPN, change bedding, wipe tears, and cuddle close their most precious child. In my exhaustion I find perspective. Thank you Lord for bringing it all into focus even when it seems to overwhelm me.

There is nothing I would rather be doing than parenting my Ashley. Along with that parenting comes some long and trying days, and some sleepless nights. On the flip side it comes with a thousand smiles, joy so radiant you can feel it, and giggles galore.

In just an hour and half I get to lay down for a few hours and I can't wait. I think she's going to have a better night tonight than she did last night. It sounds like she is resting better and I'm hoping for less vomiting to go along with that. She is currently fever free this hour and that seems to make all the difference in her comfort level. Praising God for that.

Goodnight my friends.

Not so Lucky this time

In addition to the other nonsense invading Ash's body the lab has confirmed that her line, both lumens, are growing out some sort of gram positive bug in clusters. So...early reports seem to indicate its the staph. No final identification or what it will be susceptible to has come yet, but we know its there. Seems as though we just can't shake the staph that she contracted in late December when the line was placed. It settles down while under treatment and for a couple of weeks and then it appears again. Staph is a particularly stubborn infection in lines and can be difficult to clear. Unfortunately for us we have one line site and so pulling it and replacing it is not going to be an option. We will attack it beginning today with IV doses of vanc until the lab tells us otherwise.

We are currently waiting to hear from the pharmacy so we can get started.

All indications are that Ash is stable. She's not feeling well. Obviously. Lethargic, aching, sleeping, and fussing. Her fevers have been relatively low today. Still there, but nothing like yesterday morning. They seem to spike for a few hours and then they break for a few. She is not herself, but that is to be expected. She's home where she belongs and she's safe and for those two things I'm going to be grateful. For her and for the rest of us.

We will redraw cultures Friday and then probably draw a trough level sometime Sunday.

Listening

Its 4am and I sit a room away listening to the breaths of my youngest child. Sitting here, keeping watch over her as she sleeps. Her fever broke earlier and you could hear the change in her breathing as her tiny body slipped into a deep restful sleep. A calm over her and the rapidness of her breathing slowed into a nice peaceful pattern. A few hours later and without checking I knew the fever had returned. I could hear that it was back. She's now fighting to stay asleep, closing her eyes tightly, and breathing heavy, fast, and labored with the rising of her fever. So, I sit counting respirations, heart rates, and checking temps, willing her to find rest although her body is sickly.

Frustrating thing for my Ashley is that she has only inches of bowel. 3 to be exact and absorption of meds doesn't really happen. We attempt to give them, but nothing really happens with them since there is technically no existing bowel in which absorption can take place. So she's fighting the fight without assistance so to speak and the body in which her Creator designed is doing exactly as it is supposed to. Its mounting its response to the invasion by raising her temperature in an effort to kill off the foreign invader. Simply amazing to think about.

Our hope is that in a few days this will all pass. Its unlikely in her immune suppressed state that it is only going to be here for a few days, but we can always hope. We are also hopeful that her central line is clear of infection. We won't know that for sure for until we are given an all clear from her blood cultures, but again we can hope. They are currently growing out at the lab down the street.

Knowing Ash is sick, confirmation that she indeed has a bug, just brings a feeling of defeat to our home. We all kind of walk around with a heaviness as we long to listen to her laughter and wish to see her up and playing rather than lying still so lethargic and weak. I wish I could protect her from ever becoming ill, but its impossible. We are so careful with her and she is kept as safe as possible, but the world around us is full of germs and what the rest of us can fight off proves to be too much for her. Makes my heart sad.

Anyway, we are hoping this will pass without slipping into anything bigger or getting her into other areas of trouble. She is definitely more comfortable in her bed than any where else and so as long as she remains stable this is where she will stay.

I hear a change in her breathing pattern again. Its seems as though she may have drifted back into a restful pattern. I'm going to close my eyes for a few minutes and hope that neither of us wake again until the sun is shining.

A Positive Test

Ashley Kate saw one of her physicians this morning. Same symptoms as described in the previous days except for a higher temperature and higher heart rate.

She was examined and tested for this and that. A positive was returned on one of the tests.

As Ashely Kate's parents we have MANY, MANY issues to balance in her care. There is so much more going on in her body than "just" transplant. Her medical history is extensive and complex and stretches into areas that most parents of transplant patients never even dream of entering.

From the outside my sweet girl is nothing short of beautiful and amazing. Many times people who pass us by have no idea until looking closely that there are issues. Trust me when I say that I am grateful. Extremely grateful that we can at times pass by without any disability being noticed. I see those brief encounters in our every day life as a gift. It does get exhausting trying to explain all the extras and other issues to inquisitive strangers. Funny thing is that its usually a child who notices long before the adult they are with that something is different about Ash. Kids are amazing like that.

Anyway, in this particular instance treatment for the positive test is not an option because Dave and I are responsible for caring for Ashley Kate as a whole and not in parts. One of the jobs we have as her parents is to know, educate, and investigate side effects of treatments and medications for the many things that come along in Ash's life. At the top of our list is protection of Ashley's injured brain. If at anytime "common" treatment runs a risk of further brain injury or potential complication to her precious mind then we must go around it and work to support her through the illness as opposed to treating it. We find ourselves in this place today. In the end our conclusion is this..."immuno suppression sucks!" Yup, that pretty much sums it up.

Currently Ash is not in danger. She is stable, but she is sick. With a bug. One that we choose not to treat like other patients are usually treated. Instead we will watch her closely, communicate well with her physician, and evaluate her daily if her condition worsens. Its just the way it is. At the end of the day we choose to not risk further brain injury, but to fiercely protect the mind she has been given instead.

We are also dropping off blood cultures from both of her central line lumens just in case they are infected. We assume they are not, but with a temperature of 102 this morning its necessary.

We are hopeful that in a few days her symptoms will improve and her smiley, happy self will have the opportunity to return to us.

She has another appointment Thursday morning in Shreveport with her team of physicians over there. Hoping things go the way we all want and she remains stable and home bound. Currently she is cuddle up on her pillow watching Bambi for the 5th time today.

Thank you so much for your prayers this week. I continue to be humbled by your comments, care, and concern for our precious girl and our family. After all these years to know that you are still coming to her story day after day amazes me. Thank you from the deepest part of my heart.

Just enough

Her fever is not enough to warrant cultures just yet, but its just enough to make her miserable. She's had this low grade fever for more than two days now. Its concerning. Really concerning with her central line. Culture orders come when it hits 101.3. So far its lingering around 100, but Ashley Kate's normal base line temp is 97. She's aching and fussing and overall miserable. Very few smiles coming from her and that's not normal.

I have appointments scheduled for the week. First one is tomorrow morning here in Longview. I'm sure we will be able to get orders for a line culture even if it doesn't technically go high enough. I just want to check her out, possibly CT her head to see if the infection is lingering and perhaps causing the symptoms to reappear. I'm hopeful its not. I'm hopeful this all disappears. She's had two weeks off IV meds and I'd like to keep it that way if possible.

She's sleeping a lot. Playing very little. Over all lethargic. Just enough going on to make her feel bad and keep me concerned.

I see...

the way he loves her...
...and I see the way she loves him...

...and I know that few people in his world or hers are loved as much as this.

I can't tell you the way it blesses my heart to watch how much he cares about this little girl. Blake is an amazing guy and his baby sister made him all the more amazing the day she came into his life. I often wonder what he thinks about all that she is facing. I wonder who he will become because of the impact she has had on his life. I wonder what God will do with him in this world because of the heart He has given him. I wonder what will happen to my son if the day ever comes that this little girl leaves our home for heaven.

I see how tender and patient and compassionate Blake is with Ashley Kate and I have witnessed those exact same character traits of his when he encounters other children like Ash. I watch him interact with children his same age that have minds the age of our Ashley and I know that without a doubt God has changed my son through the life of his baby sister.

In the end all that truly matters is that some how, some way, this journey our family is on leads to God receiving the glory. In the lives of Dave, Blake, Allie, and myself. We have to figure out how to praise Him through the pain the same way that we give Him praise through the joy of Ash's life. I'm not sure how to do that yet. I don't know exactly what that looks like. I just know that Dave and I will be who they take their cues from and I pray we are able to be the example they need us to be.

In the mean time, I'm grateful for days like this where he has the opportunity to love on her and she has the opportunity to love him back. They are busy teaching each other (and me) an awful lot.

Not Well

Somethings up with Ashley Kate. She's not well today. Running a low grade fever, not smiley, sleeping a lot and a running nose. Pretty much she's been fussy and uncomfortable for all of today. Ordinarily these symptoms wouldn't have me worried, but with Ash nothing is really ordinary. Guess we will be watching her close and if things don't change by Monday morning we will start making the rounds.

Ugh!!! I really hate central lines and the constant threat they pose. Just sayin...

Praying Now

Please join with us as we pray without ceasing for our precious friend Emerson. Please, please pray for her and for her mommy Erika this very moment and all throughout today.

Thank you my friends.

You Just Have to See...

... She's excited...because she knows it coming...




just look at that baby concentrate...do you see her index finger?




... shes searching for the right level...





Woo Hoo!!! She smashed some pigs!



Ashley Kate loves to play Angry Birds. We love watching her. We love listening to her laugh as she flings the birds toward the towers of pigs. She gets so excited. Its so much fun! We love watching her mind work. She is the smartest kid trapped inside a body that doesn't want to work. Using the parts of her brain that do function and adapting to the portion that does not. How I wish her brain would allow her to speak. How I wish her voice could form words. If she could speak I know she would astonish everyone with all that she knows. To see her maneuver her way through the apps on her Ipad is amazing. She knows exactly which one she wants to play. She can turn on whatever application we request. She knows what folders they are in and what icons to touch. She can turn it on. She can turn it up. LOUD! Its all or nothing with Ashley Kate.

I love this beautiful baby girl so very much. Every day she shows me something new she's learned how to do. Every day I stare at this face and am captivated by her beauty. Every day I whisper a "thank you" for all that we have been given and I focus on her abilities while I try desperately to ignore the disabilities.

She is now doing everything she was doing before becoming so ill last summer with the exception of standing and taking steps. For some reason she just can't stand. It took us 4 years to learn how to stand and step with assistance and only 6 short weeks to lose it. She can lay herself down. She can sit herself up. She can roll over. She can scoot across the room. She can "run" if she so chooses. Its hilarious! Scooting at high speeds to get somewhere she wants to go.

She's learning her colors, her shapes, and her numbers. I was playing with her last week and she got 7 out of 7 in a row when asked to choose a specific number out of a sequence of three. I couldn't believe it! We had no idea she was actually learning them.

Ashley Kate is an amazing child. Simply amazing.

Spring Break at our House

Long afternoon naps...



Road trips with your best friend...




Evenings at the ball park...

I'm loving this week of time spent with my kids. Choosing to do lots of the nothing special that has become so very special to me over the last few years. Watching Ash sleep peacefully on the rug in her playroom, seeing the smile on the faces of two little girls who aren't so little anymore when they are hanging out together, and watching my son do one of the things he does so well.

The pace has slowed down a little this week and its been nice. Ashley Kate has played and played. We've chosen to keep her close to home and not run from appointment to appointment with her. Sometimes its nice just to give her a break from doctor's offices. Her lab work looks good. She's stable. Infection free. Happy. Instead we are taking afternoon walks and evening bike rides. Working puzzles and watching Bambi a thousand times a day. Allie B. and her best friend Chelsea made cheerleader last week(so proud of these two girls) and today they left on a road trip to Dallas just to hang out for a few days. Blake and I have been taking it easy doing a whole lot of nothing. I love having him home. He is so busy I feel like we see very little of him these days and so the fact that I've been given a whole week to hang out with him is such a treat. We didn't plan to do much of anything over spring break other than relax since our big trip is coming up the week after school lets out. We are all really looking forward to making it something we will never forget.

Hope your spring break has given you and your kiddos exactly what you needed. Ours sure is. Time to slow down and do a whole lot of nothing. Its actually very refreshing. Exactly what I think it was designed to be.

Insight

I have none. It escapes me. I search and search for direction, peace, insight and find none. I am still in this place of indecisiveness and I have no idea at what point I will be ready to say "lets go."

Most days I get through easily. In the daylight hours life is so busy that I rarely stop to think about things. Every once in a while I catch a glimpse of our Ashley and I freeze, stopped in my tracks with thoughts of transplant but I to snap back as quickly as it started. Its the night times that bring me the hardest struggle. Its always been in the late evening hours where I struggle the most. The house is quiet, Ashley Kate is snuggled in her bed, Dave lay sleeping next to me. The hours of darkness are long and I search and plead and pray for answers. I pray for ease of transplant. I pray for direction in this circumstance or that. I pray and I pray until I have no idea what words to even continue praying. My heart aches and my mind races with scenarios of times past and wonders if they are to come again. I want to spare our Ashley. I want to keep her safe. I want to ease the struggle. I want to eliminate any pain of surgery, of sepsis, of unseen circumstance. I don't want to see her hurt again. I can't explain how very impossible the situation feels as you watch your tiniest girl endure such unimaginable pain. Still I know that none of this can be avoided. None of it. If we don't proceed with transplant at some point and take the risks then she will not grow up. She will die. She will run out of time. We are in an awful, awful place.

I've made no secret of the fact that I never want to take her back. I don't. Last night I cried huge tears as I wondered who would in fact be there to take care of my Ashley. All of my precious, friends who have cared for her over the last four years no longer work at UNMC. What am I going to do? Who do I trust? Who is left that loves Ash? It is so important that they love her. It makes all the difference in the world. I can't explain it, but the unthinkable is more bearable if I know that they love her. That they are invested in her. I'm so afraid. It keeps me awake at night as I wonder who will be there when we arrive.

What is going to happen when infection sets in? What is the plan? I need direction, answers, plans in place. How can we transplant her without a plan of what to do if her line has to be pulled? There are no other sites. How will she be supported during crisis? How will she be kept alive as her body battles the rounds of sepsis? I don't know of any bowel transplant patients who have made it through without at least one round of sepsis. It would take a miracle. An absolute miracle to survive with only one line sight. These are the thoughts that keep my mind racing at night.

Today, I'm watching Ash play. She's making music and giggling. A ladybug tambourine in one hand and a harmonica in the other. Her laughter fills the rooms of our home and I want nothing more than to keep her happy and smiling for the rest of her life. There are no smiles, no laughter, no play enduring and recovering from bowel transplant. Its miserable. I don't know how to do this again. I just don't know.

18

Yesterday Dave and I celebrated 18 years. Wow! We have now been married to each other for as many years as we had been without each other. Crazy when I think of it like that.

We decided the biggest accomplishments of our married lives of the last 18 years could be summed up in 3 words...Blake...Allison...Ashley. A huge smile crossed my face when we decided that. They are the best things we have ever done! So...the 5 of us went to dinner to celebrate. Together. Thats the way we like it. I wanted to share with them that they were in fact what we were most proud of in our married life.

Its been an adventure. This past year one of the hardest. No denying that. The stress and the pain of these days is undeniable, yet through each one of these days we are still here together. Figuring it out to the best of our ability together. It hasn't been easy. We still find ourselves trying to pick up the pieces of our lives post ex-plant and pre re-listing for transplant.

Dave, you are undeniably my favorite person in the whole world. You remain my closest friend. You still have the ability to make me smile every single day. I love how hard we laugh together. I love spending this life together. I love parenting our kids together. I love loving on our sweet Ashley together. Thank you for being the man you are. Thank you for having the character that you do. Thank you for picking me:) I love you, I admire you, and I like you! Even after 18 years I can honestly say that I like you. You are my best friend. Through it all I know this one thing...we are going to face it together. The good days and the not so good days. I love you. I really do.

Still So Much

There is still so much we want to do. So many things we hope to squeeze in to this time we are taking away from transplant. Ashley Kate is very much alive and we have things we want to allow her to do.

Every day I field questions about when, how much longer, why haven't we gone, how is she doing, etc. Every day I struggle to find the right answer when in all actuality I don't have any right answers. The best I can explain this delay is with this...there is still so much we want to do with her. I know it may be hard for most of the world to understand our reasons. I honestly get that. I guess the only way you could truly understand us if you have watched your child go through small bowel transplant. It is SOOOO UNLIKE any other transplant experience. There are SOOOO many risks and SOOOO many complications that are unique to placing a gut that belongs to another person inside of you child. The liver and the pancreas don't really concern us. I know there can be complications with it, but this part of Ashley's transplant has never been much of a concern. Those organs have always functioned beautifully once transplanted.

There is almost a kind of relief that we are living with now. I don't fear constant rejection. You see every day with her transplanted bowel was a day that she could reject it, become sick from it, or be hospitalized because of it. Every minute of every day we lived with the weight of that hanging over our heads as we lived her life. Without a bowel I'm not afraid of losing it. Of course I have other fears. Very real, very valid fears of running out of time, losing her central line and opportunity for transplant, etc., etc.

So I don't know if this makes any sense to you or if it answers any of your questions. I hope in some way it helps those who are concerned to see why we are still home, why we are still busy allowing her to be 5, and why we haven't had her listed yet. Maybe it will?

Ashley remains happy. So very happy! She plays all day, every day, without pain, without fear, without tears. She is so unaware that her life is any different than any other 5 year old. She still has issues with an anatomy that doesn't function properly. She still is hooked to a drain bag to attempt to reduce the amount of bile back up that causes her vomiting. She still has three IV pumps that run TPN, Omegaven, and fluids into her veins. She still does not walk, talk, or eat, but she laughs, and she signs, and she plays, and she communicates, and she moves around the house, and she loves baseball games, playing outside, riding bikes, taking long walks in her wagon, playing angry birds and fruit ninja, riding in the car, and being on the go. Ash is as happy as we have ever seen her and to give that up willingly and take it away from her to watch her fight for her life again is a very, very hard thing to do at this time.

Our schedules are busy, busy! With baseball, track, volleyball, soccer, and now cheer leading tryouts thrown into the mix we stay on the go. Its a crazy time in my teenagers lives, but they are thriving and our precious Ashley is thriving too. We are busy planning a family vacation attempting to get it in while Ash is so stable. I'm hopeful to make this a memory that none of them will ever forget. I think we have dreamed up a plan to do just that. We are very, very excited and our prayer is to keep Ashley strong enough to make the trip before we consider listing her for transplant.

There is still so much to do. So much we want her to experience. Not a lot of time, but a lot of hope.

The best thing I heard today

Driving home from a ballgame this afternoon Blake and Ashley sat next to each other in the back seat of our car. I asked a simple question just because I was wondering how he was feeling after another loss(he happens to be playing on the worst team he has EVER played for:( Welcome to the world of high school baseball).

"Blake, what are you thankful for today?"

His answer melted this momma's heart.

As he pointed to our Ashley he said, "This little girl right here."


Oh, how my hurting heart needed to hear that today! Its been an emotional day. I've cried. I've yelled. I've vented. I've asked questions to which there are no answers. On the drive over to today's ball game Dave sat next to me and listened to it all. There are no easy days in the world of small bowel transplantation. There really aren't. It seems that they all eventually fail and our children all suffer. I'm not emotionally sound enough to debate that with any members of a transplant team. I can only go based on our personal experience and those families whom we have surrounded ourselves with over the last 4 years. Few if ANY actually grow up. Its a new field. A new science. Our children are writing history for future generations of patients. I get all of that. I also get that without it most our babies would have left our homes for Heaven by now. Still my heart aches as I watch child after child after child leave this earth. Would I do it again? Make the same choice again? Yes. I would. We in fact are going to. It gives us hope. Although its a small glimmer on the other side of what seems to be "hell on earth" its at least something to hold on to. Its all we have so we grasp onto it with everything we have.

I don't even know why I'm sharing all of this. More than likely its just because my heart is so heavy tonight that I have to dump it somewhere before it crushes me.

The best thing I heard today came from inside my son's heart and it found itself into mine. I'm grateful for those words. I needed to hear them. I love our Ashley so very, very much and despite all the pain I'm grateful for small bowel transplants even if they can only offer us a limited amount of time. Its more than what we would have had without it.

Crushed

Late last night brave little Cooper was received into Heaven.

My heart is crushed. It hurts so deeply to know this morning his mommy and daddy and big sister and brothers awake to a world without him in it. I feel broken. I do feel beaten down. I am discouraged. I am angry.

I angry to live in a world where our children suffer and die. I am angry that we are powerless to stop the diseases that are stealing them from our arms. I am angry over the sin and the evil one who delights in our losses. I am angry that without a MIRACLE our family will experience the loss of our precious Ashley.

I am so angry.

Even though we have hope as believers and even though I know without a doubt that precious Cooper is with Jesus I STILL am angry that he had to hurt and that he suffered and that his childhood was cut short and that he is not in his mommy's arms.

I will NEVER understand. NEVER. I don't even want to understand anymore. I just want to hold on to my Ashley and NEVER, EVER be asked to let her go.

Its a very sad day in our transplant community as our hearts ache over another loss of one of our children. Your prayers for the Knight family are deeply appreciated. They walked this path along side their Cooper like true soldiers. Fighting for his best life possible and never once failing to love him with all that they had. May our Father hold them close to His chest this morning and cover their hearts with His peace.

My Teens

Every day I witness my son become more and more like a man and less and less like a child. His character and his presence in our family bless my heart beyond description. Today I was thrilled to be at that field, cheering him on, praying him through, and supporting his dreams. Each day, each game, each pitch, and each swing bring him one experience closer to being who he dreams of being. I love this young man. Of all the kids in the all the world if I could choose only one to be my son I can say without a doubt that this is the one I would choose.

Blake, you made me proud today. Again. It was such a blessing to watch you take another step in the right direction. You caught an incredible game and pitched even better than you caught. You know who you are and what you do best. I'm so proud to know you are mine.


This not so little girl never ceases to amaze me. Wow! There are no words to describe how incredibly tough our Allie is. Losing is not an option. Sore throat, head cold, bum knee...nothing stops her. Nothing. I've said it before, I'll say it again...I wish I had what she has. I wish I was more like my daughter each and every day. She is who I want to be when I grow up! Crazy, I know, but its true. I love her so much.

Allie B., how you do what you do I'll never know. You won that race out of pure determination and a desire to be your very best...the very best. I'm so proud to be your mom and I'm so grateful to have made it in time to see you win it. You are too ornery to allow another runner to pass you and I LOVE that about you my sweet girl. I love you so much and what a joy it was to run around the outside of that fence cheering you on. You make your mom proud.

This journal is written for my children. For a record of our journey during the life of our sweet Ashley Kate. The five of us are walking this path together. Growing together. Loving our baby to the best of our ability through the hardest of days. We are parenting our children with every ounce of everything we have to offer. I love being their mom. LOVE and treasure each day, each experience, with each one of them. What a blessed life I am living. I spent today with my big kids cheering them on as Ashley Kate took walks, played outside in the sunshine, and splashed water with her nan. It was a good day in our little part of the world.

I am grateful.

I get emotional when...

...I watch her pedaling her bike down our street faster than her nan can keep up with.

...I listen to the laughter come pouring out of her 15 year old brother as she slashes fruit along side him as they play "fruit ninja".

...I stumble across a text on Allie's phone that said, "The best day of my life was the day we adopted my baby sister."

...I witness her wrestling her daddy each afternoon as he attempts to eat his lunch.

...I see the joy well up in her eyes as we tell her its time to go some where. Anywhere. It doesn't matter to Ash as long as she gets to go with us.

...I dream about the possibility of having a year away from our transplant center. A year that allows her to be every bit of 5 years old that she can be. Its just a dream, but one that I can't get out of my mind.

...I hold that little girl close to my heart each morning when she wakes up.

...I ease drop on the "big girl" conversations Allie has with her each night before bed.

...I peek in on her "sleeping" only to find a 15 year old curled up next to his baby sister in her big girl bed reading stories to her since she just wasn't ready to go to sleep.

...I watch her pull her daddy close to hug him the best way she knows how.

...I imagine what life should have been, could have been, and will be.

...I stop long enough to realize how temporary this reprieve from struggle truly is.

...I thank our Father for each moment of each day He is giving us with our Ashley.

...I attempt to pray about another transplant.

...I read the stories of our transplant friends and I realize that there are others living similar lives to ours. The pain of their words echo the pain of our reality and it is so, so emotional.

...I think long enough about leaving that I realize we will be leaving behind two of the greatest teenagers I know to battle adolescence on their own. My heart breaks at the thought.

...I remember the pain of transplant, the physical struggle, and the fight for life and breath that my daughter will be going through. Again.

...I realize Dave and I will be holding a marriage and a relationship together across 700 miles for an unknown length of time. Its the hardest thing we've ever done. Its very, very tough to remain close when we are forced to live in two different worlds. It makes me cry remembering the empty feelings of loneliness on the hardest days of our lives.

...I witness our little girl living so unaware without a care in the world. Her innocence blesses me and yet it hurts me all at the same time. How do we start all over again? How?

The tears flood my soul and run down my cheeks almost daily. Tears of joy. Tears of pain. The tears come at the most unexpected times. I fight the sting of them as I attempt to not let them be seen. The emotions wash over me and I feel as though I may be swept away in the waves of them as they crash into my world.

Last night I asked Dave if he thought we could get a year. A year from ex plant to re-transplant. A year to be 5 and then turn 6. The truth is that at the end of the day I want more than a year, I want a whole childhood, but if I could get one then maybe I could get two?