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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 5, 2011

Hungry Lilly waiting impatiently

When I got the hospital this morning, Lilly greeting me with a little smile, instead of the crumpled face from yesterday. YAY!!! :)
Lilly is thrashing around this morning in a most annoyed fashion waiting for her milk. She is so hungry and thirsty! The order is in for her feeds to re-start but we are waiting for the pump. One thing we have noticed in our numerous hospital stays with Lilly - she does NOT like having her feeds cut off. So we think once she does get some food in her belly she'll finally settle down. And hopefully sleep! She has hardly slept since the surgery yesterday.
We've been trying to pacify her with some water on a sponge. It has worked for a little while. But then she yanked a monitor off her forehead. Little Firecracker means business!
Lilly was off the pacemaker for a little while yesterday evening. But they've got her back on it. Her heart spiked really high about 4:15 this morning (230+) but the doctor thought more fluids would help. And it did - her heart had returned to normal within 30 minutes. They've adjusted the pacemaker several times. Her blood pressure has been a little weird and her hands and feet colder than normal.
She had an x-ray and an echo this morning. Results were great - her heart ventricles are "pumping nicely." The surgeon and the floor doctor are both very pleased that her heart is squeezing and pumping just like it should be.
Lilly is now starting to yell but praise the Lord, the milk pump has arrived ...

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