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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, October 5, 2010

Milk On a Stick

Lilly was excited today about a new snack idea my husband had for her. I dubbed it "Milk on a Stick." (I was thinking of "steak on a stake" that I've gotten at Renaissance Festivals.) My husband dipped the sponge at the end of the stick into Lilly's milk and then I let her suck on the sponge. She enjoyed this for about an hour this morning.

Milk through the feeding tube keeps her tummy from being hungry but we've noticed that she still really wants to suck on something, though she'll have nothing to do with a pacifier. (I guess she knows her mama is really anti-pacifier, but I was willing to make an acception for Lilly!) We figure her mouth probably is pretty dry too. So milk on a stick it is!

The dr. said today that they'll be watching Lilly closely to see if she's got a healthy nutritional growth pattern going. They also are continuing to slowly wean her off the bit of oxygen she's getting in the tube under her nose. Once those objectives are met then she'll be released! (And we're all thinking that will be later this week as the dr's are so pleased with her progress!!)

The dr's are developing a plan for Lilly to send home with us. It looks like she'll remain on the feeding tube for awhile. Lilly's pediatrician home in N.C. will monitor Lilly's growth and her cardiologist will monitor her heart and the pulmonary artery band on it. Once Lilly is deemed big enough, or the artery band gets too tight, then we'll bring her back to Wolfson's for the open heart surgery.

We were blessed today to have a short visit from the C. family that goes to the same church back home, and Mr. C. works at the same place as my husband. Before they left, Mr. C. led us all in a wonderful prayer for Lilly. Some of the things he prayed for Lilly were so fantastic to think about. The scripture that comes to mind when I think about the prayer is from Mark 10:27: "Jesus looked at them [the disciples] and said 'With men this is impossible, but not with God; all things are possible with God.'" Men can do some pretty amazing things (like Lilly's heart procedure!) but God can do still more!

6 comments:

  1. LOL, great idea!!

    All such good news! I am so happy. And I cannot wait to hold Lilly myself again. :)

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  2. I can't wait to hold Lilly either!!!!

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  3. That little peanut is spunky for sure! I love that she is getting milk with the sponge. Her little throat is probably raw from all the tubes so the milk probably helps soothe it. Such smart, loving parents she has. She is blessed and so are they! Still praying for you all. God is good...all the time:)

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  4. "Mrs. C" was so happy to see you and precious Lilly yesterday. It was a blessing to pray with you. Don't forget to call me if you need anything-the kids and I are just sitting around.

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  5. I can see she realy makes contact with you and likes sucking the milk. Good idea! great to she her ao alert. Looks like she's feeling mutch better now. Thank God for making things possible.

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  6. Milk on a stick - I'm sure Lilly loved it! Glad the good news continues for her! I know you all can't wait to get her home!

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