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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, November 12, 2011

Goodbye cannula ... and good riddance!

Lilly has had a mostly peaceful day:

Lilly's oxygen was turned off this morning at 7:00 a.m. and she has stayed off it. Yay! No more cannula! Lilly's face and nose are rejoicing. Lilly also had her "neck jewelry" removed this morning. (The central line that went into her jugular in her neck.) With that out she was able to stop the antibiotic that she had to have with that.

We found out that yesterday's x-ray showed no change. But the doctor said that they were most interested in Lilly's oxygen numbers, which have been in the upper 90s since taking her off oxygen. Lilly will have another chest x-ray tomorrow. If it looks good Lilly could be released in a day or two.

The day Lilly had surgery, a doctor had commented on her thyroid numbers being off. We finally found out a little more about that. Yes the numbers were a little off. But nothing can really be done for another month or two, after she's recovered.

Lilly's chest scar has already healed a lot since surgery. Want to know how they closed her chest back up? GLUE!!

Lilly's big sister made her a crown to wear to celebrate when the cannula came off:

Lilly can't wait to have a bath. Her hair is exceptionally crazy!

What a relief it was for Lilly to have a better day today. She's had lots of prune juice and Karo syrup through her g-tube. Also rice cereal and bananas. It's nice to be able to feed her food again. She needs to maintain her rolls of chub! The head nurse here remembered her from last year and was so tickled with how much bigger she was and called her a "chunky monkey." It's funny how proud we are of those hard earned rolls ...

"Praise God, from Whom all blessings flow;
Praise Him, all creatures here below;
Praise Him above, ye heavenly host;
Praise Father, Son, and Holy Ghost."
(The Doxology)


4 comments:

  1. Love the crown you made T.

    mah mah

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  2. It looked like Lilly was having a healing sleep...Glory Glory....She looks so much better..oh you are without a doubt the most wonderful parents..with you Lilly has been given a blessing.Stay strong dear parent..it will get better..Much love to you and your family. xoxoxo

    Marilynn

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  3. She looks like she wanted to reserve her crown for a "Getting home party"!!!


    :-D

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  4. Looks like she doesn't feel good in these pics. I sure hope she soon feels GREAT! xxoo

    ReplyDelete