Lilly is holding steady from her cold, so far. Yesterday afternoon she started treatments with her nebulizer. She's getting them delivered through her infant sized turtle mask every 4 hours.
Lilly seems like a "regular child" with a cold right now. Yesterday she played a little with the animals hanging on her bouncy seat and talked some. She even smiled for big sister last night. (Last picture.) She sounds pretty congested but so far it is staying in her head. She's getting lots of saline spray and suctions. Since she wasn't doing too bad, yesterday, both her therapists came at their separate times since they were nearby anyway. I thought we might need to end the sessions early, but Lilly did great. She absolutely loves therapy.
Yesterday afternoon I hooked her up to the pulse ox to check her heart rate and oxygen level. (This is a great clue if her body is really struggling.) Much to my surprise it was better than usual! Her oxygen levels were in the upper 90s and even 100. And while she has a cold! (It is usually mid to low 90s because of the VSD in her heart.) I have not had her on the pulse ox all summer long so perhaps her body is naturally like this now. Which means maybe we can get rid of the oxygen at night! (I know I know I'm rushing ahead in my thoughts.) We'll track her once she gets better and see.
Lilly slept normally last night, praise God, only periodically fussing in her sleep as she rubbed at her oxygen cannula. The pulse ox did not alarm once. I couldn't believe it! I laid there a lot last night and this morning just thanking God. And thanking him for my peace too. I don't feel so panicky today. Lilly is in my lap right now chewing her thumb and talking a little. Thank you everyone for your prayers for Lilly!
I've mentioned a little boy named Caleb on this blog before. He is 2 years old and has Trisomy 18. Just a couple days ago he went in for a routine procedure to get his tonsils and adenoids removed. Shortly after that he had a heart attack and it looks like the left side of his heart is damaged. Please pray for his recovery and his parents and siblings peace. Stuff like this is so hard. We know our special babies most likely won't have normal lifespans. But it is just so hard to not to want every possible second with them and so we keep pleading with God for more.
"For with God nothing will be impossible.” - Luke 1:37
Glad to hear she is doing well despite her cold. And thankful the Lord is keeping you at peace, too.
ReplyDeleteLily is perfectly beautiful
ReplyDeletexxxxxxxooooooooo
mj
Do you understand that it took THREE nights in a row to get that smile? Booing and tickling and all kinds of things to make her grin! And if I don't snap a picture at JUST the right moment it's: 'ya snooze; 'ya looze!
ReplyDelete(I meant to spell 'lose' wrong).
It's sooo ab-normal for Lilly to be the one who is doing well you (Mamma) to be the one who feels bad. When I gave Lilly a sickness I remember I was the one thriving and she was the one who was doing badly. :(
;-D
I'm SO glad to hear this! I've been thinking about ya'll and praying for you all the time. I LOVE that smiling picture. I think it's one of the nicest I've seen of her, especially when I think of what she looked like when I was last there.
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