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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

Thursday, September 8, 2011

Moved to the CICC

Just an update from my last post. Lilly is now in the CICC. That is the Childrens Intermediate Cardiac Center. We'll be here overnight and will hopefully be released in the morning. Her blood transfusion is about done. She continues to be very restless and very thirsty. We've been giving her water, a few drops at a time, through a syringe. Her voice is still at the "squeaky stage" - sounding funny since being intubated during the heart cath. I think she's agitated just at being here.
We had something very touching happen this afternoon. D.V., the genetic counselor that talked to us about Trisomy 18 while I was still pregnant, came by to see Lilly. She brought Lilly a beautiful quilt that she made for Lilly! It is a perfect Lilly quilt - red, white, and blue to honor Lilly's 4th of July birthday. I just love this quilt for Lilly and can't wait to take her home and dress her in her birthday colors and take pictures of her on this quilt. :) Thank you D.! You have no idea how touched we are by your kindness.
Thank you Lord for granting us another day with Lilly!

1 comment:

  1. YES, Thank you, D, for your compassion and caring of our Lisa and Lilly. She continues to touch so many lives and we continue to be amazed over and over again. How one little tiny life can effect so many people in such a wonderful way. God is so good.

    I can't wait to see the quilt as I quilt also and have such an appreciation for this art.

    thank you,
    Lisa's Aunt Shisshy

    Lisa's Aunt Shisshy

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