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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, November 30, 2013

Day 2: Remembering Lilly - August 2010

This is my 2nd 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.

August 4, 2010 - September 3, 2010

Lilly wearing a dress from one of Tabby's dolls

Lilly turned one month old on August 4 and within days, we had cancelled hospice.  Yay!

We also started the search for a heart surgeon to repair her VSD.  (She had a large hole in her heart, and a 2nd smaller hole.)  Even though we live near several excellent hospitals, she was denied heart repair surgery because of her Trisomy 18.  (The team claimed it was "unethical" to repair her heart since she was going to die soon.)  We were not surprised though, as we had been warned it could be hard to find help.

We did however, find an excellent cardiologist that was local.  Dr. R was kind but seemed a bit hesitant in working with us at first.  But as Lilly continued to survive month after month, Dr. R became one of her biggest supporters and always greeted her with a big smile.  After examining her heart the first time, Dr. R prescribed Lasix for her.  She remained on that drug until after her second heart surgery.

I began adding in formula to the breastmilk Lilly was drinking to try and get more calories into her, as her weight was slowly dropping.  That stabilized her for a bit.

She was still tiny but alert.  Tabby and I said she was like having a living baby doll and we loved dressing her.  She wore preemie sizes for awhile, my only baby to ever do so.

Through our Now I Lay Me Down To Sleep photographer, we found out about Focus on the Family looking for pictures to use in a new booklet they were publishing called Gift of a Lifetime by Tammy Tate.  (The purpose of the booklet is to give information and resources to expectant parents that receive the news that their baby may not survive birth.)  We agreed that our photographer could submit some of the pictures he took of us with Lilly.  Amazingly a couple of our photos were selected!  It was really special to receive several of the booklets from Focus on the Family and see the photos and know that many many other people were seeing Lilly too!

Towards the end of the month, Lilly's weight began dropping again.  (A few ounces can make a big difference!)  I could tell she wasn't always feeling comfortable either.  Sometimes at night, she was only able to fall asleep laying on me.  We knew her heart needed help soon!

"My help comes from the Lord, who made heaven and earth." - Psalm 121:2

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