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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

Friday, June 17, 2011

Preparation ... sleep!


Weight check = 11 lbs. 7.5 oz.

Today’s pictures are of Lilly right in the morning after I woke her. Check out her crazy hair!

I was thinking the other night of how different it is getting Lilly ready for bed as opposed to my other children. The older two were simple: change diaper, put on pajamas, nurse, put in crib, and bless good night.


Putting Lilly to bed however has a few more steps. Typically they are: give night dose of Enalapril, change diaper, put on diaper cover, put on pajamas, fill milk bag with breastmilk (for continuous feed through night), carry Lilly and her milk pump on pole upstairs, plug in pump to recharge overnight, squirt saline drops into Lilly's nose, suction nose, turn on oxygen condenser and check settings, put oxygen cannula holder special tapes on Lilly’s cheeks, put cannula on and close holders, safety pin arm sleeve down of pjs so she doesn’t rip cannula off, snuggle time!-yay!, lay her on her side in co-sleeper, adjust oxygen and g-tube tubes so she’s not laying on them, put a little pillow under her top leg, cover her with her blanket, and bless her good night!

And that’s what I’d better do right now. Lilly is in my lap smiling, having the hiccups, and starting to yawn like crazy. :)

"I lay down and slept; I woke again, for the Lord sustained me." - Psalm 3:4-5

3 comments:

  1. Remember over time it will get easier (or is it that we just more used to the routine). But I guarantee you it will get easier.

    T - 17 days to that big first birthday!!!!

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  2. Wow makes me tired just reading it. But my life would make a lot of people tired too.

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  3. I had no idea. It sounds like it has become a routine for you, so thankful for your cheerful and honest spirit. I admire you.

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