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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, December 11, 2010

Don't do it sneaky Lilly!

Check out Lilly's mischievous face in this first picture and what her hand is touching. The second picture shows her firmly grasping the NG tube. She has been working really hard lately to pull it out. I often have to move her hand away from her face as she rubs on the tube and tape, and hooks the tube if she can.

Lilly has pulled out her tube a several times now. She does not like that tube! (I don't blame her.) It's quite traumatic for her to pull it out and then have me put one right back in. (And the last time I did it, she was fighting it and the whole thing was traumatic on her daddy who was watching.)

We had something weird happen last week. The pump didn't seem to be pushing the milk through the milk tube correctly (there were lots of gaps). In the NG tube (hooked to the milk tube) it looked like stomach acid was backing up into it. The pump would try to forward the milk but it would stop and the yellow stuff from in Lilly would come back up reversing things. Yuck. I changed the milk bag and NG tube and then everything worked properly.

"Tube Changing Day" is currently Mondays and I don't appreciate Lilly "helping" by pulling it out earlier. I'm really hoping that I'll get to do the rest of the tube changes when she's napping since I've found that it's incredibly easy to do when she's relaxed. Because if she's awake and feisty then I really need supernatural help!

"God is our refuge and strength, A very present help in trouble. Therefore we will not fear, Even though the earth be removed, And though the mountains be carried into the midst of the sea;" [and NG tubes need changing!] - Psalm 46:1-2


  1. Sounds like she has finally "discovered" this tube and what abilities she has! Which in itself is a great thing!!! :)

  2. I know it makes it more difficult for you when you have to change the tubes more often and i feel with you, but its great to read that youre little girl is getting stronger and more clever every day

  3. Whatever you do, DON'T PULL OUT YOUR TUBE!!! Lilly, you're a sneak!!!!

    Your Tabby :)