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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

Wednesday, February 16, 2011

Time to start planning for surgery!

Today's picture is of Lilly at the cardiologist's waiting for an echo. She was in a great mood - lots of smiling and talking.

She had a very good appointment today. Dr. R said it was excellent that she had gained weight since being in the hospital. (Apparently it can be challenging after a virus.) Her heart function is "completely back to normal." !!!

Lilly has improved so much since getting out of the hospital last week, that Dr. R said we no longer need to hook her up to oxygen while she sleeps. I was SO happy to find that out as I have been thinking she actually sounds worse at times with the oxygen tubing in her nose. (She sounds very "snorkely".) So I had been wondering how much it was helping at this point.

Finally, Lilly's heart is "getting overly thick." (In response to the pulmonary artery band and VSD because she is growing bigger.) That means it's time to plan for a surgery date. The cardiologist wants to see it happen in the next month or two. He is going to contact Lilly's cardiologist in Florida this week and said we should hear from them in a couple weeks. (Lilly will have the open heart surgery to repair her VSD (hole in her heart) in Jacksonville, Florida because no one local will do this operation on a child with Trisomy 18.)

Tomorrow Lilly has an appointment with her regular pediatrician. All these appointments certainly are tiring! But worth it.

Update on Lilly's Pop - his stroke may have been caused by a clot in his heart which went to his brain. It's affecting the part of his brain used for speech and word recognition. So he's not talking and maybe not understanding. He now has an NG tube just like Lilly's! (Though much much bigger.) He was moved out of intensive care into rehab today.

"O Lord, you alone can heal; you alone can save. My praises are for you alone." - Jeremiah 17:14


  1. Now THATS a beautiful picture! xxoo

  2. so glad you got a good report!!!!

  3. Lilly looks like she knows the Dr. will be giving her a good report! Glad she no longer needs the oxygen -one less thing you have to worry about doing.
    We will continue to lift up Lilly's Pop in our prayers and May our Lord continue to heal them both!

  4. Silly Lilly! Lookin Gooooood!

    Come on down to Florida. We will be watin for ya.