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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

Monday, September 13, 2010

We have a Wednesday appointment

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.


  1. Praying every day!!!! Shissy you are awesome:)

  2. My prayers and thoughts are with you all, especially the little angel I have come to know and care for through Nikki. Lilly is truly one of God's most noble angels, fighting each day, and I know He loves her so. God bless you all.

  3. I'll pray for you all. God can not give us always what we want. His meaning of the ways we have to go and the roads we have to cross are sometimes difficult to understand. But i know for sure He is listening to you and all youre loved one's and whatever happens, Lilly will always be a joyfull, happy, lovely and beautiful girl in your hearts. I wish you all love and strenght.

  4. Finally, some encouragement for y'all. Sounds like God has provided just the right surgeon for Lilly. This doc doesn't want to give y'all unrealistic expectations but wants to do what he can to help her and make whatever time y'all have together more joyful and easier. Let us know how the next few days go. We'll certainly be praying!

  5. I just found your blog through Google Alerts. I, too, have a Lily with Trisomy 18. She's 16 months old and going strong! I pray for your Lilly's upcoming surgery. I'm sure you know this, but it's not always easy to find a surgeon who is willing to perform surgery on our little ones. We were fortunate not to need it, but I know of lots of little ones out there with T-18 who have done very well after surgery. I wish you the best. While I can't answer questions about surgery issues, if there's anything I can do, please feel free to email me at

  6. Oh, Lord, we praise you and worship this day, and beseech you on behalf of this precious little creation of yours, your handiwork, to bless and comfort, guide and direct, imbue with peace and hope, all those who are touched by Lilly's life. We thank you for ministering to her and all the family in the countless and minute ways that only you can. We trust your will to be fulfilled and pray for a successful surgery, and an improved life. Thank you Jesus, thank you Jesus. Amen

  7. Drive safely. Know that we are all with you in spirit and wish we could be physically also. xxoo

  8. I am so glad the Lord provided someone who values life and is willing to perform the surgery. We are keeping our little niece in prayer, and look forward to hearing the outcome. May the Lord also grant you and your family strength.

  9. I agree with Kim - it's refreshing to find someone who values life enough to go above and beyond the normal! We are praying for weight gain and strength for Lilly; for strength and endurance for you and Frank, and for our Father's protection and guidance over all involved.