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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

Tuesday, November 8, 2011

Fishin' in Big Bass Bay

This afternoon Lilly's potassium levels were checked and again found to be low. That's what happens with Lasix. (She has fluid on her lungs so they're using the Lasix to dry it up. Lord willing she won't be on Lasix too much longer.) They gave her potassium and then her levels were fine.

We found out that Lilly still has a heart murmer, though nothing like it was before. They think it's from the area where she had the pulmonary artery band. So that will probably go away once that area heals.

The nurse came in and took Lilly's temperature - by her ear which only takes seconds. But that was just too much and Lilly had quite a temper tantrum! I knew she wasn't in pain because she was crying with her eyes open and it was a very annoyed cry. Her brow was heavily furrowed and her eyes were darting back and forth and she kept making sure I was still listening to her list of grievances. I listened and consoled - she has a right to be tired of all this!

At 4:00 Lilly graduated from PICU and was moved to the 6th floor. She is in a section of rooms called "Big Bass Bay." Once she was settled in she stopped complaining and went to sleep.

She's resting well though seems to be breathing faster than normal. However her heart rate is good. I'm sure it's no big deal. But we sent up a couple prayers about it anyway.

All the prayers for Lilly. It amazes us! So many people we've never even met are praying. Thank you! I enjoyed reading the parable of the persistent widow yesterday and especially the beginning:

"Then Jesus told his disciples a parable to show them that they should always pray and not give up." - Luke 18:1 (To read the rest of the parable read Luke 18:1-8.)

4 comments:

  1. I'm getting ticked for Lilly! That poor girl has been fiddled with enough! I'm glad she's speaking up for herself although she has wonderful advocates in her family that's for sure! My body winced with pain knowing that they pulled something out with hooks, oh my! We will continue to petition the Lord on her behalf, she is a dear one to us all.

    With much love and affection,

    The W-H's

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  2. OUCH! Poor little girl, you have every right to be cranky! Hope you have a good night & better day tomorrow!

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  3. They must keep those rooms a lot warmer than the rest of the hospitals!!

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  4. I'm her best counsoler. LOL!

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