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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

Monday, November 29, 2010

Cardiologist visit

Weight check = 6 lbs. 14.6 ozs.
Lilly saw her cardiologist this afternoon. He was very pleased with her weight gain. It's slow but steady. He said the pulmonary artery band on her heart is still a good fit. (For some reason I had envisioned Lilly needing the open heart surgery around Christmas time. But it may very well be springtime at this rate.)

The scar on Lilly's chest (where she was cut open for the band) is healing nicely.

Lilly seems to have a lot of deep congestion in her head at times. The cardiologist said it could be caused by the NG tube, which can irritate the nose and throat.

Today's last picture shows Lilly with her knuckle in her mouth. She's getting pretty good at getting that knuckle into her mouth. She still doesn't open any fingers except to stick her ring fingers straight out at times. But the last three fingers are loosening up some.

Lilly has been quite chatty the past few days. What a blessing it is to hear her little voice as she coos and talks to us.

"For the LORD knows the way of the righteous," "He shall be like a tree, Planted by the rivers of water, That brings forth its fruit in its season, Whose leaf also shall not wither; And whatever he does shall prosper." Psalm 1:6, 3


  1. I love these pictures tonight! She is so bright eyed and looks like she is ready to get into stuff!!! :)

  2. What a precious little Blessing she is...I love her.

  3. Beloved Lilly, suck that knuckle!

  4. Lilly, you look like-aggggghhhhhhhhhhh
    i've been caught!!!-In the bottem photo
    and I like you in the next post too-
    Look!!! I know how to hammer in nails!!! Then you hit your finger and
    go:If you don't hammer this for me i'll pull my tube right out!!!!!!!!!!!!
    If you did, maybe it would hopefully go back in smooth as butter- but we still wouldn't like that!!


  5. So glad to see Lily seems to be growing, I love these pics! Also glad to hear Bubba is doing well. I think the turkey hand pics are a great idea. Sending more love and prayers your way, Hope you have a happy Holiday season!

    Matt, Jackie and family

  6. Cute pics! Love those eyes.