Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.


Thursday, October 8, 2009

Oct 8 a.m.

Holding a little piece of heaven.

Claire finally got to wake up and get the breathing tube out! After being asleep for 6 days we are so happy to have her back! About 9:15 this morning the doctor came in and said she was ready. It happened quickly and wasn't so fun to watch as she gasped for air those first few breaths. It was a lot of work for her to do at first, but she adjusted well and they didn't have any concerns. Her voice is really raspy and she hasn't been able to talk. She hasn't cracked a smile yet and of course we don't blame her. She was able to get two of her IV lines out already. She kept showing us her left hand with the IV in it and had that look in her eyes, like "let my hand free!" Thankfully we were able to get that one out! Slow and easy....we're getting there!

11 comments:

~adelle said...

Nat that picture gives me the chills. I bet it was so comforting to hold her again. I remember my dad sounded like Darth Vader for like 4 days after his breathing tube came out. It was really weird. I love that some of her "things" are coming out. That always means progress. Give her a kiss for me.

Lindsey Rose said...

Natalie, I am so glad she is awake and doing better. I have not checked blogs for afew days and I had no idea. I am so sorry, shw will continiue to be in my prayers, as well as you. Thanks for posting the vidoe too, Benson is so sweet. we love you!

Jenny Williams said...

Jared,
I am so amazed at how much you and your family have been through! I just wanted to let you know that my family will be praying for your little ones. Good luck and hang in there.
Jenny Williams (used to be Denning):)

JoAnna said...

Oh, be still my heart. This post is so precious. It's the little things we take for granted, right? Like being able to hold our little ones. And seeing them smile. And hearing them breathe. She is so precious and I am so so glad she is able to be in your arms again.

Unknown said...

I am always stunned at how much love a mother's heart can hold. Give that little Angel a squeeze from us. Keep the faith guys!!

The Fosters said...

Jared There is no words that I can say that can express the emotion that came over me as I read your blog. I can’t imagine what your days and nights and for that matter the last few years have been like. You both amaze me as do your precious children! Please know that you will continuously be in my heart, thoughts and prayers!! Maureen Foster (Garrett’s mom)

** Adrian ** said...

Oh Natalie! I am THRILLED for you that you can hold Claire again & see her awake. Even if she isn't quite herself yet. I bet it was WONDERFUL!!! I will hug my little ones a little closer tonight & be SOO thankful that I can do that! Thanks for helping me be thankful for the little things . . . that are really BIG things that I take for granted. Love you!!!

Megan Hawks said...

Oh Natalie this picture makes me cry!!! I cannot even imagine how it feels to hold your baby after all you have all been through...She looks so good!!!

Wendy Beebe said...

I am in tears....of JOY. Enough said. Hearts and prayers.

J & M Shumate Family said...

How could I not tear up?! What a sweet moment captured forever! You are an amazing mom. So glad Claire is doing good and is breathing on her own. HUGS!!!

Cooper's Dog said...

I pray for your family often and am very saddend that your children have to experiance this...it does not seem fair. As a mother of a young child, my heart can not begin to imagin or bare the kind of pain your and your husband must be going through. Clair is absoulty beautiful. I look at her and think she has gone through more then I have and I am almost thirty. She is trully a doll baby, and I only hope for the best for her, and Bensin. May you and your family always be protected, and your prayers be answered.