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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Thursday, September 9, 2010

We have a surgeon!

Praise the Lord, we got confirmation today that the children's hospital in Jacksonville, Florida has accepted Lilly! The doctor is going to call my husband tomorrow to discuss more details. The nurse who talked to my aunt today said they are going to want us to get Lilly to the hospital pretty quickly. Because of the large hole in her heart she's not gaining weight and is having to work too hard to eat. They want to put in a feeding tube and get some weight on her and then peform the open heart surgery. They don't feel they can wait very long. That she is dying of congestive heart failure and is in quite a bit of discomfort.

Please pray that the Lord would ease Lilly's discomfort and allow her to live longer. She's been such a blessing to us we're just not quite ready to let her go yet.


  1. Yay!!!!!! Praise the Lord for this surgeon!!!!

  2. Oh, I've been praying for a feeding tube!!! And I so so hope they can relieve her pain. xxoo

  3. We're so thankful that you've found a surgeon!

  4. Hello, I am so happy that you have found a surgeon that will see Lilly. Since i first heard of her story I have kept her and your family in my prayers daily. I also have a boy "Gage" who was born with partial T-13, so I know first hand of your daily struggles. These kids are a true miracle from God.