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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

Thursday, September 2, 2010

Skinny Little Thing ...

Weight check = 4 lb. 14 oz.

Lilly's still losing weight. Even though I know it's from the medication, it's so frustrating. My other two babies were so chunky from breastmilk, I guess I just assumed Lilly would be too. And maybe without the medication, she would be. (She had just been starting to really put on some ounces right before she started the Lasix.) Medication aside though, I'm guessing her T-18 is working against her too. So many T-18 babies just "fail to thrive."

My husband wonders if having a successful surgery will be the way she'll finally be able to be well enough to gain weight.

We're still waiting to hear the decision from the surgeon in Jacksonville, Florida as to if he'll accept Lilly for open-heart surgery.