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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

Thursday, December 23, 2010

Sneaky Lilly's newest tactic

Weight check - 7 lbs. 4 oz. (same weight as last week but we have a new scale now so I don't know if it's calibrated the same or if she really just didn't gain).

In today's two pictures, Lilly is wearing a really cute Snoopy Christmas dress my aunt made her. What's extra cute about this dress is that my aunt also made one for Lilly's big sister and her Kewpie doll, and Lilly's two girl cousins. We lined up all 4 girls tonight (we forgot Kewpie!) and got some pictures. But wow - it is hard to get a good picture when there's lots of little kids in the group! Someone is always squirming, making a face, etc.

Thursday is the current "tube changing day." I pulled Lilly's NG tube out this morning, gave her a bath, then laid her down so she could take a nap. My current new tube insertion strategy is to put a new tube in her while she's sleeping because it is so easy then. (She really fights tube insertion if she's awake and has figured out how to push it out when I'm trying to push it down in her.) I'm afraid Lilly must have figured out my plan because she stayed awake for 7 hours! (A first I think.) She only dozed off once and the awoke full force once the tube touched her. I threw my plan out the window and tried a few times throughout the morning/afternoon but it just didn't work until she finally was so exhausted she was falling asleep.

It was pretty frustrating especially knowing she wasn't being fed normally during that time. I was imagining the weight falling off her. She did seem to get hungry after awhile. She ended up taking a tiny amount through a bottle and even a tiny amount nursing (for the first time ever). That reminded me that I do need to work with her on those two methods as we really pray she'll feed normally after her surgery. I admit I haven't been very dedicated to it though because she either doesn't seem interested or else spits up after.

I certainly won't ever take a baby feeding normally for granted ever again!

We prayed about all this several times today - together and individually. I admit - I was getting very frustrated with God not doing something to help me the way I wanted very quickly. But perhaps, He was trying to show me the importance of practicing with Lilly to teach her to eat normally.

"Wait on the LORD; Be of good courage, And He shall strengthen your heart; Wait, I say, on the LORD!" - Psalm 27:14


  1. Ah yes, the special needs children always seem to learn how to push our buttons so easily. A different perspective: For me with Michael, I found in a way this was good that shows normal childhood behavior (of course that's after I was totally frustrated :) I certainly understand the frustration.

    I remember a sign I used to see at Duke's Children Hospital when Michael was a paitent there saying that "God never gives us more than we can handle". For me that was hard to believe, but over time I realized that it's true. Just sometimes we special needs parents have to be reminded of that.

    I was thinking of you and Lilly today as I photographed another Trisomy 18 baby girl at Wake's NICU.

    I wish you, Frank, Lilly, Tabby, and Hunter a very Merry Christmas!

  2. Her dress is lovely! :) And as Steve said, Lilly is actually growing and learning and progressing... all good things, even though it involves pulling out her tube.
    I do not envy you the task of inserting it. I am not sure I could do it. And I also feel strongly that YOU will figure out a way around the problem and find a new way to get it done. HUGS!

  3. I do so admire you and certainly you do not often even express the frustration that must be a constant part of daily life. but rather, you do express the joys and thankfulness. Surely God finds plesure in your approach to life.

  4. LILLY!

    I- (and I'm sure you liked it out too) enjoyed you not having your tube in,
    but, you were very naughty to not let mamma put in your tube.

    You did finally get some milk out when you nursed! That's a big deal!

    Lilly, I hope you enjoy your "chew toy"
    a.k.a. teething toy, that you got for Christmas!

    I know you like your doll you got too,
    because when I hooked it on your pump,
    you talked to it for a long time.

    If there is snow, I hope mamma will let you come out in it.
    If she does let you come out with Hunter and I, I can pull you in our sled...

    Please play Tea Party with me soon!