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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

Saturday, January 8, 2011

Tube wars

It's 12:10 a.m. and Lilly and I are having a royal battle with the NG tube. I want it in - she doesn't. The tube slid out a couple hours ago - not sure why. And of course, she isn't getting sleepy though it is way past our bedtime. She really knows how to yell and make her body go rigid in protest and constant crying means I just can't get the tube to go down right. So we try, then take a break. Then try again. The bonus I suppose is that I'm getting some things taken care of on our breaks.

I love this little girl more than words can express. She's wearing her nightgown and wrapped in her quilt in my lap right now, looking up at me with her big eyes and saying something every once in awhile. She had a good day. Lots of smiles and talking. I hate playing nurse with the NG tube. I feel so mean. (Yes I know I'm helping her ... but I still feel horrible about it at times ...)

Just wish the day didn't end this way.

"Make haste, O God, to deliver me! Make haste to help me, O Lord!"

2 comments:

  1. lilly, girl, please co-operate!

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  2. Lilly, sweet pea, PLEASE be obedent and good pleasing to mamma.

    Your Tabby

    ReplyDelete