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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

Friday, November 29, 2013

Day 1: Remembering Lilly - July 2010

This is the 1st 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.

July 4, 2010 - August 3, 2010

Lillian Eva entered this world quietly in the early morning of the 4th of July, 2010.  Her first victory outside the womb was surviving birth!  (Many babies with full Trisomy 18 do not.)  She weighed in at 5 lbs. 4 oz. and was 18 inches long.  Within a few hours she was drinking from a bottle.  About 6 hours after birth, we left the hospital so Lilly could go home and meet her siblings. Her strength surprised the doctors and nurses so much, she got the nickname "Little Firecracker."

Four days after leaving the hospital, a photographer from Now I Lay Me Down to Sleep came to our house to take free remembrance photos of Lilly. 

On Lilly's first Saturday, she suddenly began having "seizures."  (I'm calling them seizures but we never found out for sure what they were.)  She would suddenly stop breathing and turn blue.  Then she would gasp and begin to breath again.  Some were so bad Frank had to breathe into her nose and mouth to get her to start breathing again.  I remember holding her and crying and saying "Please Lilly, don't leave me.  I need you!"  God spared her.  After a number of these "episodes" that afternoon, they suddenly stopped and Lilly never had one again!  When she seemed back to normal, I quickly took some pictures of her:

Since we didn't know if the "seizures" would start again - or what exactly might happen - we got set up with hospice.  But as the hospice nurses came day after day to check on Lilly, I started to get annoyed.  It seemed to me they were patiently waiting for her to die.  (That's their job anyway.)  But  Lilly was growing more and more alert every day!  She continued to drink breastmilk from her bottle and slept pretty well.  We bathed her, went on walks with her, and did "normal" baby things with her.

We all adored her!

"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." - Jeremiah 29:11


  1. Loved seeing these pictures again. <3

    1. Thanks Sandra for your continued encouragement!

  2. Beautiful, tiny Lilly! I am amazed at how well and how much she grew!

    1. It was such a fight to get her to at times but she was pretty chunky after awhile. :)