caption - title

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, December 5, 2012

Day 7: Milestones

This is my seventh post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

Though I know every day is a gift from God, Lilly is the one that taught me to not to take that lightly.  Indeed every breath we draw is a gift.

For Lilly, every day she lived was a milestone.

Of the cases of  Trisomy 18 that are diagnosed prenatally a year, more than half end in termination, miscarriage, or stillbirth.  Only 600-700 are born alive. Lilly was born alive.

50% of the babies with Trisomy 18 that survived birth die in the first week.  Lilly survived those crucial first 7 days.

90% of those babies that survived past one week die before 6 months.  Lilly celebrated her sixth month.

That leaves only 5-8% making it to one year old.  Fireworks were seen all over the country on Lilly's 1st birthday.  ;)

Of those 5-8% of children with Trisomy 18 that made it to their first birthday, 60% make it to 5 years old.  Lilly did not.  

"LORD, remind me how brief my time on earth will be. Remind me that my days are numbered--how fleeting my life is." - Psalm 39:4


  1. This is such a sweet series. My heart aches for what you have gone through and the way you miss Lily. We lost our sweet Sarah at 9 months in a house fire. What do people do without our God?

    1. I'm so sorry to hear about your little Sarah. How tragic. But a comfort she's with Jesus and doesn't ever have to live with the struggles in this life. God bless you and comfort you.

  2. Beautiful Saying a prayer for you and your family now!

    1. Thank you Tesha! I am doing the same for you and your family. Remembering Jonathan ...