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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, November 2, 2011

Heart surgery rescheduled for Friday


Yesterday we drove to Florida. All three children did fine during the long drive. It's amazing how much bigger Lilly is going into Wolfson Children's Hospital than she was going in last fall. She's 8.5 inches longer and over 8 lbs. heavier! You can see Lilly's picture from last September here - what a difference!













Lilly didn't fuss at all during the trip but she really enjoyed stopping for a diaper change. Ahhhh ... it felt good to stretch out on the seat!















This morning Lilly had her surgery pre-op at the hospital. We first met with the anesthesiologist. He was happy to know that Lilly has handled anesthesia several times before without any problems. He was talking about putting IVs in her and I warned him that it wasn't easy to do on Lilly and that they usually end up in her head. He said he didn't like them in the head so that was a last resort. We'll see what happens with that one.

This picture is of Lilly all comfy in a warm blanket after being weighed and having her vitals done:















Next Lilly had an EKG. Putting all those stickers and wires on her was the longest part of the process. Check out last years post here to see how amazingly chunky she looks for this EKG as compared to last year:














Next we met with the surgeon's nurse, a woman named P. that remembered us from last year. She was AMAZED with how much Lilly had grown. She was very impressed with Lilly's rolls of fat and her no longer itty bitty tiny hiney. She agreed that chunkiness on Lilly is a good thing. She went through the procedure for surgery day and got Lilly's medical history since last fall.

Next was lab work. I warned the nurse that Lilly was hard to get blood out of. Like all of them she was optimistic. And like most of them, she soon had to admit defeat and call in reinforcements. The next nurse was able to get the needed blood. Lilly was left sporting some neon colored bandaids on her arms and foot.















By the end of giving blood, Lilly was very annoyed and was crying. She went immediately to radiology and they did a chest x-ray. She did not appreciate that and was crying her angry cry. It took awhile to calm her down. But she finally did and then took a nap on me.

Finally we saw the surgeon that will do her heart repair. It was the same surgeon, Dr. E, that put on her pulmonary artery band last year. Dr E was also impressed with how big Lilly had gotten and said he heard from his nurse that she was smiling and talking. When he was listening to Lilly's heart she reached out and touched his arm. Then she gave him a big smile. I admit - I felt so proud of her!

Lilly is now scheduled for surgery on Friday. She got bumped from tomorrow's slot by a baby that needs emergency surgery. (Please pray that that little baby will do well during surgery and recover.) It was nice that Lilly wasn't so critical this time around so that they felt comfortable doing this. We won't know what time Friday until later tomorrow.

"For you have been my hope, Sovereign LORD, my confidence since my youth."
- Psalm 71:5

7 comments:

  1. Lilly, please know that my entire family will be thinking of you this week. I must admit, I got a chuckle out this post as it reminds me so much of when Michael had his ASD (Atrium Septum Defect) repair so many years ago, especially the part of the "angry cry" and the IV story... As I've gotten to know Lilly over the past year and a half, I'm confident that she's going to beat all the odds and do well. Be prepared to to have a "super charged" Lilly after the success of this surgery! My resident OR Nurse here in this family and myself wish you and Lilly all the best!!!!

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  2. We are praying for Lily -- at home and at church.
    Ellen & Dave Baize

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  3. I love those chunky pics and am amazed at how un-clenched her hands are in the last picture! We are PRAYING here.

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  4. Will be praying for sneaky Lily. What a beautiful moment you described with Lily touching the surgeon's arm and smiling. Wouldn't that have been great to have in a picture? Maybe he will agree to pose with Lily for a picture before surgery? I am so glad this day has come for your family.
    God bless.

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  5. We are praying for baby Lilly and your family. It is just wonderful that Lilly is a chunky monkey now. You are very special to us!

    With love,

    The W-H's

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  6. Passing the word along to all my prayer warriors for Lilly! Keep us updated when you can!

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  7. My thoughts & prayers are with you, Lilly, I've followed your story this past year & I *KNOW* you can do this! xox God is watching over you & will help make you stronger...we're all praying to him for your recovery & for strength. We love you Lilly!! Best wishes to you and your family, sweetheart :) Love & kisses from Lee in Boston

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