Weight check = impossible to tell - Lilly has too many things on her and equipment on her bed to be weighed.Today was wonderfully "uneventful" from the doctor's perspective. Lilly didn't set off the "red alert" alarm at all. She seemed comfortable and content today as she busily chewed the breathing tube in her mouth. My husband and I both found that it was better for us not to talk to her or touch her very much because she would respond by looking at us and starting to wiggle around a lot. (We want her to stay pretty still right now.) But how great that she's not so doped up she doesn't recognize us.
They took the chest tube out today. (It was for drainage.) I cheered as that means one less thing in her and one step closer to when I can hold her again.
Because it was discovered yesterday that Lilly has no thymus, she'll be on an antibiotic twice a day - three days a week, for at least several months. It will be a tiny amount at a time. I want to do my own research too to find more ways to build up her immune system. I'll start by adding in some colostrum to her bottles. Plus I'm taking a product called "Pure Immunity" so she gets that in the breastmilk. But I need to research this further.
At 2:30 this afternoon they turned down the ventilator for the 3rd time thus far. The setting they went to meant for every 30 breaths, 20 were on her own. Yay! Miss Fiesty was responding so well that they said they were going to try and take her completely off the ventilator tonight sometime. (They had not tried when I left the hospital this evening.)
My husband and I were talking about Lilly being a trisomy 18 baby. We found that we have both, in the last few days, have really reconciled with Lilly having T-18. It's interesting this came about for us both at about the same time - and we hadn't been talking about it at all. Anyway, though of course we both would give anything for Lilly to be "normal", we both are just so deeply in love with her just how she is, that we have found we can truly - for the first time - thank God for her T-18.
". . . No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him - " 1 Corinthians 2:9
Dear Lisa,
ReplyDeleteLily is in our thoughts and prayers. I hope and pray she recovers well. I am so glad to hear that God is really blessing you all through this process. Hey, since we aren't far from JXville, how would you feel if we came to visit Lily and you all for a 1/2 day visit? Let me know. Thanks, Coleen
So happy about your calm day!!!! Lilly looks so alert and content in the top picture. She looks awesome:) Praying for more calm days!!!!
ReplyDeletedear little granddaughter,
ReplyDeleteit was so good to see you in person yesterday. despite the tubes and wires you looked wonderful! good coloring, peaceful countenance, and rave reviews from the doctors and nurses about your feisty determination and progress. keep up the good work and we'll be able to spring you and daddy out of the hospital soon. big sister tabby rose (my new nickname for her) and big brother hunter (who now calls her by her nickname) are anxious to see you.
love,
mah mah
All this is SO encouraging! She is progressing so nicely. Thanks so much for all the updates..... I know with two more children to tend to that taking the time to write down all this stuff takes a lot of effort. hugs.
ReplyDeletePraise to God, our merciful Father, Thank YOU
ReplyDeletemj
Acts 17: 24-28 "... He determined the times set for them and the exact places where they should live. God did this so that men would seek Him and perhaps reach out for Him and find Him..."
ReplyDeleteIsaiah 43:7 - "... in whom I have created for My glory..."
God places each one of us where we need to be to fulfill His purpose. Lilly has been given to the BEST parents for her - and in her short life she has already been living for Christ - touching so many hearts, especially mommy's & daddy's!
In spite of all the tubes and equipment Lilly looks great!! She's a real miracle! oxox
ReplyDeleteSo happy that Lilly is doing well. You are so right in thanking God for her T-18. In all things be thankful. We love our grand baby, Anabel Leigh, and we love her "special needs" T-18.I couldn't imagine Annabel being any other way because this is the way God chose for her and for all of us. God bless you and we will continue to pray for Lilly!!
ReplyDeleteCynthia
Lisa,
ReplyDeleteI feel the same way you and Frank do about Lilly. I don't really see her as a T-18 baby, but as our delicate little wee one as you like to call her. I think she is sooooo BEAUTIFUL!
I can't wait to hold her. I am glad you and Frank are able to hold her now.
She is a precious baby sent by God and spared by God. I'm so thankful she is doing well. God is good:o)
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