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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, December 6, 2013

Day 8 - Remembering Lilly - February 2011

This is my 8th post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

February 4, 2011 - March 3, 2011

 Lilly turned 7 months old at the hospital, still recovering from the virus.

While there, she had a swallow study to see if she aspirated when she swallowed.  (That can be common for T-18 children.)  Lilly wasn't drinking or eating much by mouth, but I had hoped she would be one day.  So I was very glad to have the test done.  It can back good - Lilly swallowed normally.

So we could keep giving her milk or water by syringe or dropper.

Finally it was almost time for Lilly to be released.  YAY!

Lilly cheering
There was talk among the hospital doctors that Lilly may have sleep apnea so she came home with oxygen for the nights.  I also set up an appointment for a sleep study for her.

One new thing Lilly did this month was to grab on to my finger when my hand was by hers.  It was sweet.  We also began working with a special bottle called a Habermann feeder to try and get Lilly to take her milk that way.  But she never got the hang of it.  She just chewed on it rather than sucking it.

Lilly was our sweetheart for Valentines Day:

At the end of the month, Lilly had a sleep study.  While waiting for it, I took this "famous" picture of her:

The fun and games soon ended though as she had a bunch of wires hooked to her scalp.  I don't know how she managed to sleep but she did some after crying for quite awhile:

In the middle of the night, the tech came in and hooked her up to oxygen.  But they wouldn't tell me what was happening.  They said I had to wait to discuss results with our doctor another time.

Back home I found, much to my delight, that Lilly liked coconut oil.  A wonderful healthy fat to help add weight to our girl!

Notice Lilly's arms in this picture.  She kept trying to pull her NG tube out!  Poor baby's cheek looked so irritated from the tape.

"He gives strength to the weary and increases the power of the weak."- Isaiah 40:29

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