I talked to the chief of surgeons at the Wolfson Children's Hospital in Jacksonville, Florida this morning. (Wouldn't you know he called when I had two babies crying!) Anyway, he set up an appointment for Lilly for Wednesday morning.
The doctor was so refreshingly positive. He reminded me that T-18 babies often don't live long. But that their surgeon is "more than willing" to do the surgery to eliminate heart failure. I love this - they want to make Lilly's "quality of life better so our time with her is better."
The plan is for Lilly to meet with the doctor and then be admitted to the hospital for a complete evaluation. That gives them the option of putting in a feeding tube.
The ideal weight for this surgery is 10 lbs. however the doctor recognized that that is completely unrealistic for Lilly. (It could take her 2-3 months to get to 10 lbs.)
We will be traveling to Florida tomorrow and are not sure how long we'll be gone. I'll update the blog while there. We will be staying with my aunt who is only about 20 minutes from the hospital. What a blessing from God that is! That means even our children can go with us.
Please pray that Lilly's little body will be strong enough to live through the surgery and she'll be able to breathe on her own, right away, afterwards.