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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

Tuesday, December 7, 2010

7 lbs.!! 7 lbs.!! 7 lbs.!!


Weight check = 7 lbs. 0.5 oz. !!!!!!

"Give thanks to the Lord, for He is so good. His faithful love endures forever." 2 Chronicles 5:13

I really feel like Lilly has reached a huge milestone by finally hitting 7 lbs.! I admit I've been getting frustrated because her weight gain seems to have really slowed down. (I suppose that's a reason why doctors say trisomy 18 children "fail to thrive.") But the other day I was reminded by Ann Barnes, the author of a care book for families of trisomy 18 children (Care of the Infant and Child with Trisomy 18 or Trisomy 13 - available from http://www.trisomy.org/ ) that it's normal for these babies to gain weight slowly. In fact, her precious T-18 daughter, weighed about 5 lbs. at birth and it took her a year to gain 10 lbs. (Megan lived almost 20 years! How incredibly encouraging is that?!)

Though Lilly still holds her hands constantly clenched, other than sticking up her ring fingers at times, she is slowly loosening them some. For the past few days she has been sticking up the last 3 fingers on her left hand at times. I still like to put her "diplomas" (rolled up washcloth bits) in her hands to stretch her fingers and give her palms a break, but she drops them a lot now. A good sign!

I've made a discovery about inserting Lilly's NG tube. If she's sound asleep I can easily slip the old one out and the new one in without her ever waking. However if she's awake and fussing - then it is really hard to do. So from now one, when I have the option, I will change it during one of her naps.


In today's pictures, Lilly is wearing the apple hat hand and Mary Jane's knitted by K, available for purchase from: http://www.etsy.com/shop/craftingadoptions

8 comments:

  1. Love the expression on her face in that first pic!

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  2. oh - so sweet! is she getting red hair?

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  3. congratulations, lilly grace! keep up the good work!

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  4. Yay Lilly Eva!!! I'm soooooo glad you are 7 lbs!!!!! I love that for saint "nick" day we both got paper dolls.

    Love you Lilly Eva!
    Tabby

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  5. Yay! Praise the Lord! God is so good!

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  6. Your Lilly is just the sweetest little girl ever. Grow Lilly grow!!!

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  7. She looks like the apple hat hand is just made special for her. Look at that lovely happy face.
    Good for you Lilly, keep on growing and you will get a lot more of thos beautiful clothes:-)

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