Today's pictures make me smile - Lilly's eyes are so wide and clear. She had a bath this morning - you can see her mohawk is extra fluffy and rather unruly. A nurse replaced the line coming out of her head today. When you look at Lilly from that shaved side of her head - it makes it look like her mohawk is a fashion statement. :) I can't wait until her hair grows long enough for me to do puppy tails on her. The nurse told me that she has a friend that had a T-18 baby that lived about 2 months. :(
The doctor commented today that Lilly has "overall really done well" - both pre-surgery and post-surgery. :)
Lilly got her heel pricked for blood once an hour for a good portion of today. They were testing her sugar levels which were showing a bit low now that some of the feeds were removed. She's also been getting a chest x-ray each morning. She's still showing some fluid around the lungs though the doctors are pretty sure that that fluid is leftover from surgery time. She's still on the Lasix so Lord willing that will clear it up quickly. Finally they're continuing to lower the oxygen amount that's going into her nose.
Lilly got her heel pricked for blood once an hour for a good portion of today. They were testing her sugar levels which were showing a bit low now that some of the feeds were removed. She's also been getting a chest x-ray each morning. She's still showing some fluid around the lungs though the doctors are pretty sure that that fluid is leftover from surgery time. She's still on the Lasix so Lord willing that will clear it up quickly. Finally they're continuing to lower the oxygen amount that's going into her nose.We're still waiting for her to be discharged from ICU.
Another splendid afternoon of holding Lilly. She's just so content in our arms and we are too. I talked to Lilly about God today and shared a scripture where our Lord describes himself to Moses: "The LORD, the LORD, the compassionate and gracious God, slow to anger, abounding in love and faithfulness, maintaining love to thousands, and forgiving wickedness, rebellion and sin." Exodus 34:6-7. I found it very humorous to learn today that the Hebrew word for "slow to anger" means "long nosed." God is long nosed? Turns out that there used to be a belief that the length of your nose had a lot to do with how fast you'd lose your temper!
On a sobering note, while at the hospital yesterday, I noticed a child in a room were there was a flurry of activity with doctors and nurses all day. By the time I left the hospital the room next to this child had been opened up and it was filling up with a lot of tense looking people, who were there in relation to that sick child. My husband told me that about 11:30 last night he suddenly began to hear heartbroken wailing from many people. This morning those rooms were empty. It makes me tear up just to type this and to praise God again for sparing my little baby girl as that scene could have been us.
"Now this is the confidence that we have in Him, that if we ask anything according to His will, He hears us." I John 5:14
THANK YOU THANK YOU THANK YOU everyone for praying for our Lilly! God hears His people and is answering daily with her life!
Lilly's skin and complexion and overall "look" is so much healthier looking now... even with a mohawk! :)
ReplyDeleteI've wondered about the boys that you mentioned in an early post that never had visitors....
To work in a Children's Hospital and in a unit like this takes some amazingly wonderful people.
I'm with Nikki, I've wondering about the boys you mentioned too!!!! I love the big eye picture. Her coloring looks great!!!! Hope today is a great one:)
ReplyDeleteTo paraphrase part of Psalm 139:14
ReplyDelete"I will praise thee; for Lilly is fearfully and wonderfully made: marvelous are thy works;"
Those big dark round eyes show the beauty within Lilly that our Heavenly Father created to be uniquely her.
She is a beauty! Her cheeks are rounder, her eyes are brighter and she looks like she is ready for the world now. Love the new hairdo :o) We're still praying for you little one! Praise God, praise God, praise God for you!!!!!!!
ReplyDeleteI feel happy everyday when i here Lilly is o.k. Have to think a lot about this little angel with those beautiful big eyes. You don't just have angels in heaven, you have them on earth too!
ReplyDeleteLittle Bright Eyes - she is so cute and seems so alert to what is going on around her! My heart aches for the family who lost their child - may God comfort them with His Love and Peace!
ReplyDeleteWhile i praise God and thank Him that Lilly is doing so well, my heart breaks for the family of the child you mentioned who passed away Saturday night. please let us all pray that this child's family will find the peace of the Almighty as they work through their loss...
ReplyDelete