Ashley's Story

She will leave fingerprints all over your heart

9/28/2007

The good, the bad, the ugly...

or whatever you want to call it.

The Good:

I had the opportunity to rock this precious baby in my arms this morning. I kissed her little hands and I kissed her forehead(my absolute favorite place to kiss my children). I smelled her hair and I prayed over her body. I allowed myself to just enjoy being close to her again. I saw her smile a very tiny, fleeting grin when I sneezed and it made my heart smile. She loves to hear her daddy pretend to sneeze over and over again and it must have reminded her of the sneezing game they play. That is the good I have found today.


The Bad:

Ashley's bowel is of course in some level of rejection. Still an undetermined degree. This morning her labs show that her liver is in a little bit of distress as well. As crazy as this may sound, I hadn't even consider the rejection of both organs. I asked if it were possible for her to reject both at the same time, and they agreed that they too thought that it looked like a possibility based on the morning labs. So are we actually rejecting both organs? We do not know for sure, but if her numbers continue climbing then we will schedule a liver biopsy next week.

The GI doctor doing her scope did not have encouraging things to say about his view of the bowel this afternoon. He actually said "it looks like rejection, but I am not a pathologist." The surgeon came in to view the bowel on the screen during the scope and she felt like she saw some healthy tissue still there. That part was a little encouraging.

The Ugly:

Based on what the surgeon saw on the screen she is thinking about going ahead with Ashley's take down procedure while we are here. Of course Ash will have to recover from this bout of infection and rejection first, but if she can recover before the end of October then she thinks it might be in her best interest to go ahead. The ileostomy(loop of bowel on the outside of Ashleys abdomen) is very prolapsed and doesn't look too good. She is also concerned about a loop of bowel she saw that is turned underneath the skin which could pose serious problems with further prolapse. This is ugly. The time of year is not optimal for Ash to be in the hospital. We are just approaching flu season and virus' run rampant in the halls during the winter. This could be ugly, not to mention the mental battle we will go through as we put Ash through such a procedure. We just weren't prepared for that yet, but if it is in her best interest then of course we would agree.


There are days in this life that are more trying than others and it is during those times that I try my hardest to find things to be thankful for. None of this situation is under my control. I can't change a moment of it. I can only control my reaction to it. My hope and my prayer is that our Ashley will recover and her health will be restored. I would love to have her home for the holiday season for the first time in her life. My mind is trying to wrap itself around the possibility of a long hospital stay. I miss my kids. I miss Dave I miss normal life. I miss a lot of things, but I am still blessed even if a tear or two happens to fall from my eyes. He knows and I really think He understands.

22 Comments:

At 3:43 PM , Anonymous Whitnee said...

Thank you for the update. I will be praying like always. I know this is so tough. May God give you the strength you need!

 
At 3:44 PM , Blogger Morgy's Mama said...

I am praying for good news soon. I know that our Father in Heaven is very much in control. Her story has never been easy, but there is such joy to read when the load lightens. I am so grateful that God has given you a spirit of thankfulness in this storm. So glad that you can see glimmers of hope and blessings. They are most certainly there, Trish. Yall are being thought of and prayed over this day.

 
At 3:44 PM , Anonymous Davian's Mom said...

Trish,
I know how frustrated you feel. I remember those days in the hospital with my little one. I missed home. I wanted a normal life. I wanted definite plans and answers. I never got those things. However, I also enoyed every little smile and sound I could hear from Davian. I find myself wishing I was still in the hospital with him rather than being home without him. The past seven months for me have been so empty. I actually drive to the hospital where he was here in Texas remembering the every day visits to the hospital to see him. He never came home in his one year of life. The two months I had him outpatient were the best two months of my life. It was the closest to normal life. I love reading Ashley's story, because it makes me happy to know that not all of us moms are heartbroken. Some kids just keep going no matter what challenge they face. Sadly, other don't. All I can say is that you are blessed. Perhaps, it is time for this procedure, and look at it this way, you won't have to come back for another surgery God willing. Maybe this time when you go home permanently. All of us readers know that she deserves that. Well, I will continue praying for you and Ashley. Take care. Don't forget to get plenty of rest.

 
At 3:45 PM , Anonymous Anonymous said...

PRAYING HARD.

 
At 3:50 PM , Blogger cindy/barron said...

Trish, i think im on the computer every few minutes checking for updates on sweet Ashley. We are still praying for miracles and know that GOD is able. I was happy too hear you got to hold her i know that did you alot of good.I know its hard but we are going to stay on the postive thinking side. We know all things are possible through Christ who strengthens us.CHECK ON YOU GIRLS LATER

 
At 4:16 PM , Blogger Sun said...

Oh I will not stop praying. All the little girls, boys and parents prayed for little Ashley in my ballet class the other day. My friends and family are praying too! You and your family are so precious to so many...your continued thankfulness in the face of trying circumstances - that is to the glory of God my friend. You are a living example of clinging to the Rock in the midst of a storm...thank you for that. Thank you for the updates. Thank you for being a mommy that challenges, inspires, and walks out a Godly example before me. Sunshine

 
At 4:28 PM , Blogger KimberlyDi said...

You and your baby girl are wrapped in prayer. And you got a grin from her! That's a promising sign.

 
At 4:30 PM , Blogger Amy T said...

Glad there were those precious moments for you to enjoy today. I know you both enjoyed them and that you both needed that. Praying for your needs to be met and for God's comfort and guidance to be so present, it can't be mistaken for anything else.

 
At 4:32 PM , Blogger Tammi said...

Still praying for Ash!

Just wondering, Trish, is there a reason why your not mentioning the name of the drug that causes Ash such distress?

 
At 4:37 PM , Anonymous Anonymous said...

Praying, dear Trish and family. May God bless you and hold you all very close.

 
At 5:22 PM , Anonymous Anonymous said...

Dear Trish,

Just wanted you to know I am praying for you. I feel for you now. I am hoping that you feel great peace tonight and in the days ahead. Please do not worry over what others think about you or the decisions you make. We all know you have Ashley's very best interests at heart - enough said.

I pray you can go home soon.

Love, Pam

 
At 5:52 PM , Anonymous Anonymous said...

Trish know that the thought of you, Ash and your family is never far from my heart. Praying for you guys and the doctors as they make decisions for Ash. ~CHan~

 
At 5:54 PM , Blogger Karen said...

Trish, I've come across a couple of things lately that I wanted to share with you. First, I was recently listening to a Focus on the Family program, and the guest, who was speaking on overcoming adversity, said when going through difficult times, misery is optional; joy is a choice. You have such a good, realistic attitude, and I admire you for choosing to find the positives in each day. Secondly, along the "joy" lines, Stormie Omartian wrote in one of her books, "joy doesn't have anything to do with happy circumstances; it has to do with looking into the face of God and knowing He's all we'll ever need." I hope this might give you a bit of encouragement. Know that I continue praying for you guys. Love and blessings, Karen

 
At 5:56 PM , Anonymous Anonymous said...

Trish.......

You and your sweet baby are wrapped in prayer daily by many people........I hope you find comfort in knowing that.......oh, how I wish I could be there with you......to hold you and hug you during this time....I am continuing to wrap you and your family in my prayers.

Prayerfully,

Shari

 
At 6:52 PM , Blogger Fiffer said...

Oh Trish...I am so sorry for what you're having to go through. Just yesterday morning I was encouraged to see Ashley back in her "classic Ashley" pose and was believing that I was witnessing a miracle. Now you have so many questions and uncertainties and I'm just so sorry. But listen to me here...YOU ARE A WONDERFUL MOTHER. (And yes, I'm yelling it!) No one has Ashley's best interests in mind more than you do. God chose you and put you two together because you were just the ones he wanted with this precious baby. Therefore, NO ONE is qualified to pass judgment on the care and treatment you choose for her. Absolutely no one. And I HATE that anyone would suggest anything different. I am in awe of your honesty and faith in God...you so openly and genuinely share your struggles in hard times, and your thanksgiving for having such precious gifts in your children. Realize that there are just negative people in the world who think they can say nasty things because they'll never meet you face to face. So instead of being hurt by them just feel sorry for them, that they are so unhappy that they have to direct their unhappiness towards someone as precious as you. They obviously don't know the kind of inner joy you do. But don't ever -- not even for a second -- take it personally. You and Dave are absolutely incredible parents and a testimony to thousands of people throughout the world as we see how you are walking hand-in-hand with God through this journey. I pray you feel a peace that truly passes understanding and that tonight brings you sweet rest.

Love & prayers to all five of you,
Martha

 
At 7:27 PM , Blogger Joyful Days said...

Continuing in prayer.

 
At 7:53 PM , Blogger Gretchen said...

He understands and He loves you so much, Trish.

Praying.

 
At 7:58 PM , Anonymous Anonymous said...

Cheers to Martha! You took the words right off of my keyboard and saved me time trying to come up with something beautiful to tell Trish. Thanks. :)

Trish, I am praying for you. We are all sisters united in Christ and united as moms who love our children. You are a wonderful mother - never forget that.

 
At 7:58 PM , Blogger Sarah's In the Midst of It said...

He loves you dearly, Trish. I'm praying for you during these tough days of discouragement. I am already anticipating the post when you announce that you two are going home for the holidays! I'm writing it down in my journal to pray for that for you every single day!!

 
At 8:06 PM , Anonymous Christy said...

yes...praying!!! God is still on His throne....and HE is powerful!!! keep your chin up...you're surrounded by a billion cyberspace friends lifting you up!!!

 
At 8:12 PM , Blogger Barbie@ Mamaology said...

Praying for you Trish. And sweet little Ashley too.

 
At 9:13 PM , Blogger Connie said...

I am sending cyber hugs, if that's possible. I'm definitely sending up real prayers which are way more effective. This reader is in no way hostile to your emotions. Please don't feel like you have to defend yourself! I have had some interesting comments on my blog, too but I try to remind myself that they really don't understand, and that I'm not writing for their benefit anyway! God bless.

 

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