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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

Saturday, December 7, 2013

Day 9 - Remembering Lilly - March 2011

This is my 9th post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

March 4, 2011 - April 3, 2011

At 8 months, Lilly became very good at making eye contact with us when we talked to her.  She also smiled back often.  Her legs became strong and she could stand well on them, though everything above her waist was still floppy.

We met with our county's Early Intervention specialist and got the ball rolling to set up physical therapy for Lilly.

At the thrift shop, I found a beautiful vintage communion dress and bought it with the hopes that Lilly would one day wear it.  I didn't know then that that would be the dress I buried her in.

Lilly tried tiny bites of several pureed foods by mouth: rice cereal, avocado, and banana.  She didn't seem to enjoy the process a whole lot, other than playing with the foods on her tongue.

We got Lilly's sleep study results and learned she had "obstructive apnea."  Later in the month we took Lilly to see a pulmonologist to try and figure out what was causing her apnea.  Dr. H thought perhaps Lilly's tongue might be blocking her air passage while she slept on her back so she suggested we put Lilly on her side.  (I remember thinking that I knew Lilly seemed to sleep better on her side or stomach, but during the night I put her on her back because - well - that is what we moms are brainwashed to do these days.)

Our little gift from God, playing in tissue paper.
From that night forward, I put Lilly down on her side to sleep.  WHAT A DIFFERENCE!  It became very easy for her to sleep through the night and her breathing sounded better too!

Lilly hit 9 pounds this month.  (I'm shaking my head thinking about it now.  9 pounds at 8 months.  Solomon must have hit that by his 2nd month!)

Towards the end of the month, the cardiologist and surgeon team at Wolfson Children's Hospital decided against doing surgery on Lilly to repair her VSD.  Her left ventricle had thickened to the point that they did not believe her heart would function well off bypass.  They did not know how to protect her heart and were concerned she would not survive surgery.  They were baffled why this had happened.  I was devastated as the doctor said "Now is not the time for surgery."  He did reassure me that if her left ventricle shrunk back to normal she would be able to have the open heart surgery.

Lilly often fell asleep after tummy time
Lilly had another sleep study done, this time while sleeping on her side.  It went great!  She was kept on oxygen though only the slightest amount.

She also saw a surgeon about g-tube placement.  She was given a stomach scan to see if she had any acid reflux issues.  She passed with flying colors - no reflux!

Lilly wearing one of my baby dresses
Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” - Matthew 19:26

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