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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, February 15, 2011

An ounce and half of joy

Weigh check = 8 lbs. 6.5 ozs.

Yes! That's an ounce and a half gain since Sunday! I feel like turning cartwheels! Especially because I still haven't started adding the formula back in. (My husband convinced me to wait a few more days.) I know this sound crazy but it is seriously so exciting for me! Having Lilly gain some weight without the formula to give digestive issues and tummy aches. There must be a lot of prayers going up about this!

We've increased milk mLs in the pump to 23/hour. Plus Lilly has had 3 very successful bolus feeding. (second picture) Here's how that works - I connect her NG tube to a syringe and hang the sringe higher up. (On the left of the milk pole in the picture.) Then the milk goes down by gravity. Today she had two feedings, 2 oz. each, and each took about 25 minutes. She seemed to have no problems with them. This is much more natural for her body than the continuous feeding from the pump. I look forward to her going over to this and also adding more mouth feeding.

Lilly has a special prayer request for Pop, her paternal grandpa. He had a stroke yesterday and is still in the hospital unable to talk or move much. Lilly really wants to be able to spend more time with him so she is praying hard and asks that her blog readers would say a prayer for her Pop too. Thank you!


  1. Wonderful news! I pray this is going to continue to work and get that girl healthier all the time.She does look as though she is about to bust through the thighs of her breeches. How exciting!
    So many to pray for. Pop is in our prayer right with Lilly and the other T-18 children I know by name.
    I wish Moriah was near by to help Pop with some rehab.

  2. Great news!! Will add Pop to the prayer list too!

  3. Great pictures, 'Lil Valentine!

    Lilly, how many times everyday do you pray for yourself??? Ha ha! Trick question!

    PS. Pray for Pop!

  4. WERE YOU doing CARTWHEELS over to Lilly's side...? Looks like something was making her laugh!!! So glad that you waited on adding the formula and now see more answered prayers!
    We will be praying for Franks dad and family!

    [Love Lilly's outfit- glad it fits!]

  5. Carol in New zealandFebruary 17, 2011 at 12:48 AM

    Hello Lilly precious. I love your spotted stretch and grow. You look so grown up. Love to you and your Pop.
    Carol in New zealand