This morning I got Lilly ready for church in her blue dress, which she's starting to grow out of! She got to wear her new mary jane shoes, knitted by my sister-in-law K. (2nd picture). After I had Lilly ready, I put her in her bouncey seat. Within minutes, Sneaky Lilly had kicked one shoe off and was working off the other, and wiggled out of her headband (last picture).
We're getting a lot of questions - in person and by e-mail - as to what our plan is for this week for Lilly's open heart surgery. We are going to leave for my aunt's house in Jacksonville, Florida on Tuesday. Wednesday morning Lilly will have pre-op at Wolfson Children's hospital. She'll have an EKG, echo, and blood work. They will let us know that afternoon what time she needs to be back at the hospital the next day for her surgery.
Surgery will be Thursday and will last about 5 hours. (What a way to celebrate her 16 month birthday!) Average recovery time, at the hospital, is 10 days. My husband will stay at the hospital with Lilly 24/7. I will be there during the days, and will go back to my aunt's house in the evenings to spend the night with our other two children. (Yay for homeschooling - it's easy to take everyone with us. And yes, the school books are going too!)We will have a laptop with us at the hospital and there is supposed to be wireless there. So I will be updating the blog from the hospital. But if there's any problem, I will update from my aunt's house in the evenings.
Thank you so much to everyone for praying for Lilly! Please continue to pray that the surgery will go smoothly and that Lilly will recovery quickly. It is so exciting seeing what the Lord is doing with her life. One of my very favorite verses in the Bible is Jeremiah 29:11:
"'For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future.'"
Oh no! Not homeschool! Well, this time big brother H. will have to suffer with me!
ReplyDeleteTriple sneaky Lilly would have taken off her socks - if she had on socks!!! We've got her foiled!
Praying for a successful surgery and recovery!
ReplyDeleteLots of love to you all!
I follow your blog and will be praying for a wonderful outcome for Lilly. She has touched my heart and I share your story and blog with many people. good luck I will be praying for you!
ReplyDeleteLilly most beloved girl, my thoughts and love go with you as you face your next challenge.Best love and hugs from Carol in New Zealand. ((((xxx))))
ReplyDeletePraying for your Lilly & her surgery and recovery. You are probably prepared for the recovery, but if not, please feel free to contact me with any questions. We learned alot about getting off the ventilator w/our recent heart surgery. I do recommend that you request that they use a glide a scope to intubate Lilly. They had problems both times our Lilli was intubated, but after using the scope, they were able to intubate her. I wish I had known of such a device. It gives them a picture of how the baby's airway looks. Since most of our t18 babies have small chins, it throws their anatomy off for the person placing the et tube. There were several times we had the "trach" talk with various doctors. I also recommend that Lilly not be over-sedated when they take her off the vent. Our baby had been given so many doses of sedation, I really think it hindered her respiratory & contributed to her staying on the vent longer than necessary. I don't want you to go through that. Please call if needed 317-332-7152
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