Ashley's Story

She will leave fingerprints all over your heart

9/30/2007

Shakey Ground

I am going to do my very best to explain where Ashley's health stands today. It is a little confusing, and a little frightening, and a little overwhelming.

Ashley's bowel is in a dangerous place. The CT scans yesterday showed some light on to part of her condition. I have shared with you already that Ash's abdomen is very, very distended. Her bowel is shut down and is no longer allowing fluids, stool, etc, to empty into her ostomy. Why has this happened? Is it because of injury? rejection? infection? This morning this is what we know:

There are bacteria that have embedded themselves into the walls of Ashley's transplanted bowel. The bacteria are going through their normal life cycles while in those walls(although it is not normal for them to be there. I hope I am making sense) and are causing air or pockets of gas to form in the actual walls(the tissue) of her intestine. What does this mean? She is in a very dangerous place. One of three things will happen.

1. This is the path that we pray we travel. Her body along with the antibiotics we have started could attack and kill the bacteria allowing the bowel to heal and in time(we have no idea how long) return to normal function only causing the discomfort that she is in at this time. We truly hope that this is what happens. It will be the safest outcome for her.

2. The bacteria could cause the bowel to necroses(or die) resulting in a resection of the transplanted bowel(meaning that we remove the dead sections of the organ and hope the remaining will function). Essentially she could be faced with the exact same disease that she suffered when she was born called NEC (necrotising entero colitis). This is an extremely dangerous condition and many children die from it. As painful as that is to share it is a fact. Ashley survived the disease once and I believe God could bring her through it again if He so chooses.

3. The final possibility of her condition is that the pockets of air could rupture the walls of the intestine( a perforation) causing the content of the bowel to leak out into her abdominal cavity. This is extremely dangerous and would more than likely spread a toxic infection throughout her entire system. We then would be battling a dangerous case of sepsis.

Ashley's doctor was very honest with me this morning. She fully expects that Ash could deteriorate and become very, very ill in the upcoming days to weeks. At this time Ashley is uncomfortable and exhausted, but she continues to breath on her own and maintain good numbers all across her monitors. Her blood pressure is stable. For these things we are grateful. They do expect these things to change as the condition plays out. We do stand on very shaky and unsure ground. No one knows (except the Father) what will take place in Ashley's body.

The reality of transplant life is that it is not a cure for our children. It is a means to give them life and to give us time. God has blessed us with two of the most amazing and precious years with our daughter. He could bless us with two more and then two more and then two more, but He also may not choose to do that. I know that, but it does not make me wish for her not to be here with us. We were created with the desire to live and that is what I desire for my baby. Dave and I have always known that the truth be told our sweet Ashley Kate will probably not grow up to marry and have a family of her own. She may only be with us for a short period of time. Our goal as her parents is to give her every opportunity to live and to laugh and to be loved. We will continue to do that. I kiss her and I hold her and I sing to her and I pray for her. I want for her to be made whole and to come back home to our family. That is my desire for her life, and He already knows the desires of my heart.


Your prayers for our baby and our family during this time are so appreciated. It is difficult to find ourselves back in this position. I have moved into her room in the PICU and I will stay here with her until we are allowed to go home. Thank you for loving a tiny pickle who came into this world and stole her mommy and daddy's hearts. We love her more than I could ever explain. Please pray for Dave. He longs to hold her and to make her hurts disappear. That's just the daddy in him and he is hurting for her today. I am still numb from all that has happened this morning and for now I just wait being careful not take a moment of her life for granted. We love you guys. Trish

63 Comments:

At 1:29 PM , Blogger Toby said...

I came across your blog through a prayer request one someone else's blog. I know that you don't know me, but I want you to know that Ashley and your entire family are in my thoughts a prayers.

 
At 1:38 PM , Anonymous Anonymous said...

you, ashley and your entire family are in my thoughts and prayers daily. trish

 
At 1:49 PM , Anonymous Anonymous said...

Jesus shines through every word you write. I pray that every moment you are with Ashley in the hospital is precious & God continues to pour His grace on you & Ashley Kate. Such scary things you are facing, but God is good & His plan is best. I coninue to pray that healing would be His will. Your trust in Him is amazing.
Prayers,
Brandi in PA

 
At 1:56 PM , Anonymous Courtney said...

Trish,
We just came home from church and I jumped right on the computer to check on Ashley. Please know that today I am praying more fervently that ever before for your sweet baby. I think of Allie's "Waves of Grace" paintings and I pray that God's grace will just continuously pour over you during this scary time. Praying for Dave as I know he wishes he was there and for you as you face this uncertainty alone.

 
At 2:00 PM , Anonymous Grandma said...

Oh, how I wish I had the words for you, Trish and for David and Blake and Allie during this very difficult time. All I know is that I love you guys with all my heart and soul and I love Ash so very, very dearly and my heart is breaking right along with you. I also know that none of us could be making it through all this without our precious Lord and all the prayers people all over the world are offering up for each of us. Knowing to trust God is one thing, but really, truly trusting Him is another. My prayer is that we all can truly trust Him and accept His perfect will. The desire of all our hearts is for our sweet, tiny little Gherkin to overcome all this once again and be happy, smiley, and show her fun-loving personality once again, SOON. I will never cease to cry out to God for Ashley and for the rest of the family and pray for more faith to believe and more strength to carry each of us through each and every day. Trish, you are doing a FABULOUS job of caring for Ash, as Dave does a GREAT job of taking care of all his responsibilities here. Blessings to you all - Grandma

 
At 2:03 PM , Anonymous deanna buchanan said...

I don't know exactly when it would work out to do this, but I wanted to ask you if you were open to some company one day in the next week or so. It would just be me (Kali's mom). Please don't be afraid to say no. I would completely understand. You can call (515)967-0660 or e-mail me with your response (setfree-@hotmail.com). Keeping you all lifted up before the Father....

 
At 2:03 PM , Anonymous Anonymous said...

Trish...your faith is so amazing....your trust in HIM has grown so much in the past year that I have followed along with you in prayer for Ash......I see HIM in you. Praying for you ....for Dave....for Ash....Blake ....& Allie. We never know what the future holds but we do know God's timing is perfect....His will not ours...& I am thankful we can pray & let Him know our hearts desires. Praying.... Hugs from Texas...
S.

 
At 2:08 PM , Anonymous KimN said...

such a sweet little girl who has stolen the hearts of so many. My hear aches for her discomfort and fear..my prayers are for God to relieve her of this discomfort quickly that the antibiotics work mightily and quickly and a smile can again grace her sweet face.....Praying that God continue to give you the strength you need to get through this

 
At 2:16 PM , Blogger Barbie@ Mamaology said...

Trish I am praying for sweet little Ashley. Your perspective is wonderful! God is being glorified through all you are doing for her.

May HE give you peace and rest today in the midst of this storm. And may HE give Dave peace also.

 
At 2:19 PM , Anonymous Anonymous said...

praying....

 
At 2:20 PM , Anonymous Mandy said...

I just found your blog today. I'm praying hard for Ashley!

 
At 2:22 PM , Blogger Amy T said...

Praying for you and with you. I know you are scared and we are lifting you and the whole family up. The not knowing seems to be the worst sometimes. I pray that God will continue to guide you and Dave through this time. I pray that you and Ashley will soon get some rest. Thanks so much for updating us even when I know sometimes you don't even want to acknowledge some things by typing the words. Bless you.

 
At 2:33 PM , Blogger Gretchen said...

Trish thanks for the cont'd updates and requests for how we can pray. I've never met you, but God is bigger than us both, and I sense a divine appointment to check in with you. I'm so glad I clicked the link on Sarah's blog. Again, and again, I pray that God will show Himself to you in a tangible, ever-present way. In JEsus name. Amen.

 
At 2:34 PM , Anonymous Anonymous said...

Trish, you are such a wonderful person and mother. God is already answering so many prayers lifted for Ashley. One of my prayers tonight will be that she will be pain free in the days ahead.

 
At 2:36 PM , Anonymous Anonymous said...

Praying, today and every day... We love all your family so so very much. God Bless.

 
At 2:37 PM , Blogger jtcosby said...

I wish I knew what to say...I don't. So I will leave it up to my Heavenly Father...and pray. We love you.

 
At 2:42 PM , Blogger Candy said...

Praying for your little pickle, Lord, heal this child and give her comfort.

 
At 2:48 PM , Blogger ManyBlessings said...

"Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails
and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the LORD, I will be joyful in God my Savior.

The Sovereign LORD is my strength;
he makes my feet like the feet of a deer, he enables me to go on the heights." Habukkuk 3:17-19

Praying...

 
At 2:52 PM , Anonymous Emma said...

Please know that I am praying.

 
At 3:02 PM , Blogger Sun said...

Words fail me - I will not stop praying for your precious family and sweet little girl! God loves you and Ashley and your entire family so much. My family will be praying for yours. Sunshine

 
At 3:21 PM , Blogger Fiffer said...

She has stolen my heart too. I love this little girl. I was in tears this morning and my kids asked me if it was because of Ashley. So she has become an important part of our lives even though we've never met. That matters not -- what matters is that we are all part of the family of God, and when one part of the body is hurting, the whole body aches along with it. We continue to pray for complete healing for Ashley and that her bowels would miraculously start working again. Above all, we pray for peace for your family amidst the turmoil you're going through. The mother's love you have for your sweet pickle moves me each time I read your words. It's not that I love my kids any less, it's just that you have such a way with words and have the ability to express in words the very feelings of my heart. God bless you and be with you in a very real way. I am also praying that Dave or another family member could come to be with you because you need the emotional and physical support. But know that the spiritual support is here for you in a mighty way.

Love & MANY prayers, Martha

 
At 3:38 PM , Anonymous Anonymous said...

Praying for your family and sweet Ashley.

 
At 4:03 PM , Blogger Bekah said...

Praying for your family and for the Lord's hand of comfort, peace and strength over your precious daughter. There are no words for things like this. The hurt is too much to understand or explain. It is evident that you know that HE is with you and will not leave you for a single moment. He is near and I will be praying that His presence is more evident now than ever before in your life.

 
At 4:16 PM , Anonymous nikki said...

Greg took the computer with him out of town for three days and I still got updates from my mom because I needed to know how Ashley was doing and how I could pray. But I have to admit it was a relief to have a break from the heart breaking news that you've had to report lately. I spent a lot of time praying for you and David and Blake and Allie and your mom and mine and Graypa, but especially you and David, because I realize you do not have that choice. There has been no break and no breather and seemingly from the last few posts I've caught up on, a lot of confusion and adversity and judgement. As someone who has been guilty of that toward you in the past (though never with Ashley), I'm sorry. And I'm praying over those commenters that verse (which I don't have before me at this exact moment) to think upon those things that are good and lovely and right. I hope for them to learn that lesson that I did - the hard way. I hurt for you all. I even miss Ashley through many tears and I haven't shared what a special privilege and tremendous blessing I believe God orchestrated by having you all in our home. I loved that weekend. It will always be a top memory for me. And I knew in the back of my mind not to take that kind of ease and enjoyment of Ashley for granted, but still I really believed that she would not be facing these circumstances again so soon. Just know that my heart feels so much that I have no idea how to express. That my prayers are with you all continuously and that I love Ashley so very much!

 
At 4:23 PM , Anonymous nikki said...

Hopefully you'll know my heart enough to make sense of that comment. As I read back over it, I knew what I meant, but it sounds so rambling and non-sensical. I care. And it hurts because ya'll and Ashley hurt. And I know what you mean about being so blessed by the little moments with Ashley, because you shared that with us. And I'm grateful for it. That's basically the jist of all my rambling. I love you.

 
At 4:29 PM , Anonymous Anonymous said...

The picture of Ashley sleeping the previous post is so adorable. She just looks like a little angel! Thank you for sharing the latest news with us I am praying for you all. (((hugs))) ~Chan~

 
At 4:36 PM , Anonymous Jule White said...

Praying...I know you are scared. NEC is so ugly. My prayers are specific today as I lift you up. I pray for #1 on your list. I've been there.

Praying...continually...

Love, Jule White

 
At 5:18 PM , Blogger jajbs said...

I have been reading your blog since the beginning of the year. I have been praying for your family and have been amazed by your sgtrength and unwaivering fiath. I pray God hold your precious baby girl in the palm of His hand and wrap your family tightly in His peace. God is a God of MIRACLES and I just wanted to let you know that I am praying for one for sweet Ashley.

God bless,
Amanda

 
At 5:27 PM , Anonymous Britzy19 said...

Praying....
Kiss that sweet baby girl for me *hugs*
-Brit

 
At 5:34 PM , Blogger Wendy said...

I continue to pray for you, your family and of course, sweet Ashley who seems to have stolen EVERYONE's heart. This is scary news; I cannot imagine how you must feel hearing the doctors lay out all these options. I am praying for #1 - the best possible outcome; and I'm praying for comfort for Ashley and rest; and of course, for God to wrap his healing arms around all of you and continue to fill your hearts with His love.

 
At 5:43 PM , Blogger Stacy said...

Praying for miraculous healing and restoration for Ahsley!

 
At 5:43 PM , Anonymous heidi said...

Bless you for counting your blessings. Bless you for your strength and appreciation for what you have been given. Bless your whole family.

 
At 5:45 PM , Anonymous Anonymous said...

Hey Trish,

Oh, I know how totally honest you are with this site. I have been in your place, literally in the same PICU room at bedside. With all my heart I hope Ash gets comfortable, she starts trending in the best direction, and that you (and Dave) get some great emotional relief. I know you are running on empty, but you are doing a great job of staying faithful and hopeful. Not too much Diet Coke -- you need your rest, too!
M

 
At 5:54 PM , Blogger ange said...

I have been reading your blog for a while and I wanted to write to let you know that she will be in my prayers. I will pray for your family, for strength and comfort. ange
from TX

 
At 5:55 PM , Blogger Keri Ann said...

I'm praying...for healing for Ashley, for sweet rest for both of you, and for the peace of Christ in your heart and in your husband's heart.

 
At 5:55 PM , Blogger Sarah's In the Midst of It said...

Trish, I hate to see the road she is heading down, especially after several months of progress at home! I am hurting for you, as a mama, and for your family. I feel like I've followed Ashley's story long enough to know that there are ups and downs, but I'm hurting with you through this one. I pray that this is just another page in her story, and that she will soon be safe at home again.

Your testimony of sacrifice, love, blessing, and honesty shine through, as always. Just as you are so greatly blessed to be Ashley's mama, she is equally blessed to be your daughter. You are both amazing. I'm praying for you, and especially for her through these next days . . .

 
At 6:13 PM , Blogger JMom said...

Praying for ya'll.

 
At 6:19 PM , Blogger StefB said...

Praying for your beloved little girl...

 
At 6:25 PM , Blogger Carey said...

Praying with all Ive got for your little girl

 
At 6:43 PM , Anonymous Anonymous said...

Praying...

 
At 7:34 PM , Anonymous Anonymous said...

I wish I had the right words to comfort you, but I can't come up with any that seem "right". Trish, you never cease to amaze me. I know that writing the possibilities must have been painful and made things seem more real. Jesus shines through this whole situation, your family, and through your sweet Ashley. I am praying daily for your family, the doctors, Ashley's health and the decisions that need made at this time. Loving your sweet baby from afar!

Shari

 
At 7:58 PM , Blogger Elizabeth S said...

I don't have any words of my own to share. But I saw this quote on another blog today and I loved it. "If God brings you to it, He'll bring you through it." Praying.

 
At 8:29 PM , Blogger Deb said...

I am praying for Ashley and your family.

Deb

 
At 8:36 PM , Blogger cindy/barron said...

Trish i to am like so many no words just prayers prayers, and more prayers and tears. Ashley Kate i love you , you have become part of my heart, and your family too. LOVE MS.CINDY

 
At 8:44 PM , Anonymous Anonymous said...

I want you to know I am praying for you and Ashley tonight. Praying for peace and healing. Your words touch me so deeply. I am praying and hoping all goes well. We have a great God - He can cure all.

Love, Pam

 
At 8:49 PM , Anonymous Anonymous said...

Oh Trish - I just wish I could take this all away for you and your family. I wish God would just snap His almighty finger and she would be made new and you guys would be able to go home.

One good thing, I think, is that as "bad" as some things look right now, they have not asked you to call in the family and be ready to say your goodbyes. That means they are still fighting and believe there is still a chance she will recover from this and is not on the brink of death. That is a positive thing to me.

She is just covered in prayer. So many people love you and care for you and your family. Lean on us and allow us to carry you in prayer before our Gracious Father in Heaven. He is in control and as a poster said a while back, He is not surprised by ANYTHING your Ashley is experiencing! He knew every bit of this would take place way before she was even conceived. Praise God for that!

Things can turn around. We will be on our knees for you. You are so very loved! Lean on God...remember, He is your daddy too!

 
At 9:08 PM , Blogger Paulette said...

Man I just came in after a long day at church and came here first. I am so shocked I guess and sad for all of you to have to go this path again. I cant imagine all the unknown for you Trish and I am so sorry.
I am not deterred in my praying at all and I will become even more vigilent.
Please know I am always up and while I am awake I will be praying.
Thankyou for the updates, I find myself coming here alot.

 
At 9:09 PM , Anonymous Molly said...

Dearest Trish,
You have all been in my thoughts and prayers today.
I know am praying that all five of you will get a peaceful rest tonight. May God's richest blessings continue to be poured on you.
We are praying for you!
Molly

 
At 9:12 PM , Anonymous Anonymous said...

We continue to lift you up! Praying without ceasing! Your words are so amazing and I thank you for sharing with us in this "chapter" in your life. We love little Ashley and I truly believe she is an angel who has touched more lives that you will ever know...and she will continue! Mistie

 
At 9:15 PM , Blogger Morgy's Mama said...

praying for healing

 
At 9:18 PM , Anonymous Anonymous said...

I read often but never leave comments. I believe now is the time for me to express my love for the baby that I do not know but through the words and photos that tell her story here. I am wishing you and your family strength and lots of love. Love from Minnesota, Heather

 
At 9:24 PM , Anonymous Anonymous said...

Continuing to pray for Ashley, her doctors, her mama, her daddy, and her brother and sister.

 
At 9:28 PM , Anonymous Anonymous said...

Keeping Ashley and your family close in my prayers.
Beth

 
At 9:56 PM , Blogger CrownLaidDown said...

Hi Trish,

Our family will be praying for yours...what a beautiful darlin' girl. May the Lord heal her completely and give you the #1 of your answers.

We are from Marshall...now transplanted to Colorado. We have some wonderful godly friends there in Longview. I'm praying that He will send many godly and loving friends to pray and to hold you as you wait.
You will remain in our prayers, friends.
May His Hand be holding you,
Holly Smith

 
At 10:02 PM , Anonymous Anonymous said...

praying and hoping for a better day on Monday. Love in Ohio, Colleen

 
At 10:05 PM , Blogger ivey elizabeth said...

you are in our prayers. gwen

 
At 10:08 PM , Anonymous Anonymous said...

I know this is not the time for questions, but the bacteria is it Salmonella? There is a type that is also accompanied by a rash. I just happen to have some experience with that and my daughter and when you said bacteria in the walls....I know it is not really important, it just sounded familiar. I will keep praying for you all and for Ashley to have the strength her body needs to fight and recover.

 
At 10:13 PM , Blogger Lyric said...

I will add my prayers to all those here...

Emmanuel.

 
At 10:25 PM , Anonymous Denise said...

Just wanted you to know we are praying for you and for sweet little Ashley. Jesus is holding her in his arms right now and He is holding you too! Hold on tight to him and your faith!

 
At 10:48 PM , Blogger WendyDarling said...

I found you when BooMama asked for prayer for little Ashley. We will be adding her, and your family, to our prayer list.

 
At 12:19 AM , Anonymous Anonymous said...

Dear Trish, I know that it might not seem like it now but Jesus IS being glorified. Through every life that is touched and through every soul that is stretched and grows in Christ's love because of Ashley and all that she is growig through, through yours and Dave's testimony and the character shaping and growth and spiritual maturity Blake and Ashley are experiencing, Jesus is being glorified. Don't for a moment doubt that He isn't. I know it might be hard to see that from where you are sitting, but from where I am sitting, Jesus Christ comes shining through. Jesus, bless this family. Bless Dave. Give him strong leadership skills to know how to lead his family at this time. Help him to lead with integrity. Thank you for his and Trish's commitment to one another. Thank you for their faithfulness to one another. Put hedge of protection around their marriage. It is at times like this I think, during times of separattion, that Satan loves to attack the most. And God,please give Trish PEACE tonight. It sems like sometimes that is where Satan loves to attack her the most. He tries to steal her peace. I thank You that Dave and Trish's marriage is already as strong as it can be. Help Trish to deal with the loneliess of separation.
And Trish, I hope this prayer makes some kind of sense to you. I hope no part of it offends you. I have just been feeling the need to pray for your marriage. Times of separation are hard on a marriage. I found that out all too well this past year. If there is one thing I have learned this past year it is that I am LOST, I mean absolutely LOST without my husband. I feel the same way when my husband isn't around as you do when Dave isn't around. I just feel better when my husband is there. I hope some of this makes some kind of sens:) Love and blessings. Judy Sleep well Trish and Ashley.

 
At 12:24 AM , Blogger mandy said...

Trish, and Family,
I'm praying for Ashley! I've been lurking now and again at your blog for a while now. I stopped on by via a link from Dawn (prayingthemhome)'s blog. Just wanted to let you know we are thinking and praying for your baby girl and your family!

 
At 12:30 AM , Blogger julie said...

I just came across your blog and have been moved by your faith and love for your daughter. I will be praying for her healing and for your entire family.

Blessings to you,
Julie

 

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