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

Monday, September 6, 2010

Still shedding those ounces

Weight check = 4 lbs. 13.5 ozs.

First the good news - Lilly is 9 weeks and 1 day old today! God is so merciful. :)

Lilly has dropped another 1/2 ounce. I've been trying to really get her to eat more and more often. But the result seems to be no weight gain plus she's been having frequent spit ups and tummy aches and that makes her cry a lot. (We don't want her to cry much - that's burning those precious calories!) None of that is productive, so I thought this week I'd continue to offer the milk, but wouldn't be so pushy with it if she really didn't seem interested. So we'll see how that goes.

We're still waiting to hear back from the hospital in Jacksonville, FL regarding them doing the open heart surgery on Lilly. My aunt called Friday and was told they hadn't gotten Lilly's records yet. How frustrating! My husband had called the week before so there was no reason they shouldn't have. He called again Friday and was told that everything was faxed that day. So Lord willing, we'll get answer this week.


  1. frustrating. and we just don't have time to waste...

  2. what formula are you trying? there is enfamil enfacare 22 (it is green/teal colored with bunnies on it I believe) for preemie babies that has extra calories in it. that might boot some. are you allowed to give her some oatmeal/rice in a bottle mixed in with the formula/milk? just cut the nipple a tad so it will go thru easier for her.

    I hope I'm not bogging you down with information I just wanna see that little baby do well!! :)

    link to a sample: