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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, November 13, 2010

Fussy days

Weight check = 6 lbs. 9.5 oz.
We tried turning up the amount of milk Lilly was getting through her tube this week. However, she has been really fussy the past couple evenings and nights and since she's not usually like that unless she's hurting, we're guessing that that extra little amount of milk is just too much and her tummy hurts. (I pray that is all.)
(Top picture) Lilly looked so peaceful sleeping that it almost gave me the creeps. I had to make sure she was still breathing OK!
Big brother loves to gently pat Lilly. He's fascinated by her milk pump and whenever we thank God for Lilly he always chimes in with "and the pump!"


  1. love the pics:) hope you feel better, lilly!!!!

  2. I certainly understand the checking during her sleep. I've done it.
    Adorable pic of Hunter and Lilly.

  3. Many trisomy moms have oxygen saturation monitors- especially if there is a cardiac condition. It can set the mind at ease to do even sporadic testing.

  4. Mallorie's MommyNovember 14, 2010 at 9:36 PM

    Sorry about the fussy spells....we have them at our house too if it makes you feel better. We blame it on new teeth and introducing new food. And, I do the breathing check as well. Frustrating sometimes isn't it...not knowing what they need??? Hang in there:) Lilly looks fantastic!!!

  5. I'm the pastor of Angier Primitive Baptist Church and I have been praying for Lilly since I first heard about her. I passed the prayer request on to my church as well as others across the country. I believe in the power of prayer and it's obvious you do as well. The Lord is with her.

    My first nephew was born 4 months premature and the doctors said IF he lived, he WOULD be severely mentally disabled. He is now 14 years old and far from dead or disabled. Unfortunately, many doctors do not factor in the Lord's blessings in their diagnoses.

  6. I'll light up a candle and pray to God everyday Lilly is o.k. and ask Him to help you all whenever He can.
    God bless you all.