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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

Wednesday, November 9, 2011

"Fluffy" lungs

First picture - Lilly's new round gel pillow - I thought the name was funny - "Gel-E Donut."

Second picture - Lilly's got a sympathetic ear with Daddy.

Lilly is on such a low amount of oxygen that they tried turning it off. But her SATS dropped down and stayed in the upper 80s so they put her back on it after 30 minutes. The doctors are still hoping to wean her off it tonight or tomorrow. I know Lilly will be thrilled to get that cannula off her face.

There is a child in the next room crying for his mommy and daddy. He has been hysterical for at least an hour. It is SO hard to only be able to listen and not go pick up that child and try to calm him. I don't know how nurses do this job day after day.

Lilly had a chest x-ray this afternoon. The results weren't too great. Her lungs still look "fluffy." In fact, a little "fluffier" than yesterday. They are wondering if she is aspirating some. But overall there does not seem to be any huge worry about it at this point. Still, we are asking for specific prayers that Lilly's lungs would clear up. They are keeping up the Lasix three times a day to flush the fluid out, keeping her bed at a 45 degree angle, and suctioning. When she wakes I am trying to spend time patting her back. A nurse told me it would be OK to take a little pillow and put it on her chest and pat that to try and break up mucus.

Oh no ... now another young child is beginning to cry hysterically ... Somehow it's harder to listen to them than to Lilly. With Lilly I know we're doing everything we can to help her. It sounds like these other children are alone.
My three-year old son cried this morning when I left for the hospital. This was the first time since we've been here. We've noticed (during Lilly's other hospitalizations) that about a week is his max. Then he really needs his mamma and daddy with him.

"Comfort, comfort my people, says your God." - Isaiah 40:1

3 comments:

  1. well, I love jelly donuts... so maybe this one will make her feel as good as a Gingerbread Bakery one!!
    I love the pic of Lilly and Bubba.
    I do hope those other babies are not alone. :(

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  2. A 45 degree angle is the one I use in Calligraphy!!! :-D

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  3. But you left out the part about your Son going upstairs and getting in the little trundle bed, tucking himself in and taking a 3 hour nap for the 3rd day in a row. (This is a good thing)

    It is 6:20 pm and he is all washed up and wearing yet another pair of new pj's courtesy of his Auntie Moriah, playing in the front room so he can watch for Mommy to come home.

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