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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, August 28, 2010

Focus on our Family

Weight check: 5 lbs.

Lilly lost 2 ozs. I'm sure it's because of the Lasix medication. Sure wish I could lose weight as easy as she can! The medicine (and prayers!) are helping. She's breathing easier overall. Also she's eating better/easier.

We had something neat happen. Focus on the Family ministries is putting out a booklet entitled "Gift of a Lifetime" that they are writing "to help families who face an adverse diagnosis during pregnancy, in order to provide a comforting resource in the midst of their distress." They like the type of photography that Now I Lay Me Down To Sleep does, and would like to use some of the photos from our photo shoot with Lilly in their booklet! (A photographer came to our house 4 days after she was born and took photos. Many of you saw the slideshow of these pictures.) Now that's pretty special. Another Lilly Blessing. :)

I read the booklet and liked it. In addition to addressing the parents and siblings grief, they have suggestions on how others can help families going through this grief process.


  1. I know that reading about others with similar situations has helped me and will help others. And I love the fact that your beautiful photos will be used. :)

  2. That sounds like an awesome idea and lilly is a beautiful girl to showcase:)

  3. Hi, I just read Lily's story. I was contacted by a friend who thought I could be of help. My daughter, Allie, was born with severe Mitral Stenosis. She was on Lasix to help her breathe until she was forced to have surgery at 7 weeks/7 lbs. due to not being able to breathe and eat at the same time. I'm sure the symptoms are similar to your Lily's. She did undergo 2 open heart surgeries in a 2 week span. Though she was tiny and had to receive an adult mitral valve replacement...we are so grateful of God's Grace and Mercy on her and our family as she did survive the surgery and lived a happy 10 months with us. My hope and prayers are with you that God will place Lily with the Dr. that can do her surgery. I spoke with Allie's Dr. and he was just as stubborn as the Dr.s you mentioned when I questioned him about the surgery for her. So glad you're one step closer to finding a surgeon! God Bless You ALL!