caption - title

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, February 1, 2011

Return of the furrowed brow

When Lilly wants to let you know about something she's not happy about, she usually works up to it. And it almost always starts with a furrowed brow. If the furrowed brow look doesn't get the right response, then she'll start to cry. Lilly did that today and it was great! It was great that she felt well enough to communicate in her way. (This time she was letting me know her diaper needed changing. She does NOT like a wet diaper.)

Lilly has had a great morning. Her heartbeat is the lowest it's been since we arrived. It's in the lower 100s. (It was about 185 when we arrived.) Her fever has fluctuated between 99 - 100 degrees.

Dr. R (Lilly's cardiologist) came to check on her and said he was "very pleased." Yesterday's echocardiogram was "marginally better." Hey it may not be much but we'll take it! Dr. R was happy to see her heartrate so much lower because that means her heart is not having to work so hard. And the left side of her heart is working a little better. She'll get another echo tomorrow to check fluid levels on her heart.

Lilly seems to have an infection in her right eye, so she will be getting drops for that shortly.

The hospital dietican stopped by. She said I need to be giving Lilly a multi-vitamin with iron and vitamin D. (I've only been giving her vitamin D.) She recommened one called Tri-vi-sol. She also encouraged me to start trying solids with Lilly. I told her that I had planned to try this weekend - with either avocado or rice cereal - but Lilly had other plans for us. :(

I've seen two dogs go by the room while we've been here. They're brought here to see sick children. I'm sure it must do the children so much good. I know I wished they'd come see me! That sounds like a wonderful ministry. Hospitals are such boring and colorless places - just not very cheery. But petting a furry dog with a wagging tail can really brighten things up.

With Lilly's fighter pilot mask gone, I was able to hold her in her favorite position today. As soon as she had her head against my chest, she fell asleep. I held her for five hours - until my body was screaming to get up and my lunch came. It was so great though for both of us. When I put Lilly back in her bed she stayed asleep and still hasn't woken up. I think the being awake for almost 2 days has finally caught up with her. Rest is so healing I hope she continues to sleep.

They've periodically turned Lilly's oxygen down today, a little at a time. She is responding well so far.

Keep on fighting Lilly! :)

As Lilly and I read the Psalms this morning, I was particularly struck with Psalm 41:1-3:

"Blessed is he who considers the poor; the Lord will deliver him in time of trouble. The Lord will preserve him and keep him alive, and he will be blessed on the earth; You will not deliver him to the will of his enemies. The Lord will strengthen him on his bed of illness; You will sustain him on his sickbed."

Isn't that an amazing blessing to get for helping the poor?! It certainly encourages me to find more ways to help those in need.

7 comments:

  1. Woohoo, Lilly! We are still praying for you! -Stinker and Ava

    ReplyDelete
  2. love the good news:) i used the tri-vi-sol all three times. i still have one unopened one i think(if it hasn't expired;). i'll get it you!!!!

    ReplyDelete
  3. We're praying for you all!! Love, Anne & Tim

    ReplyDelete
  4. It's great she's got such spunk!! Keep fighting, Lilly! We're cheering you on!

    ReplyDelete
  5. Praise the Lord for the improvement! We continue to pray!

    ReplyDelete