It has been nerve-racking to be in the puzzle-solving phase of trying to find the best mix of drugs that will sedate her but not over sedate her. When she wakes up, she doesn’t seem to be in pain, thank you Lord that we didn’t see her bothered today! But she stretches and wants to look around when her eyes are open... and that’s really not safe for her to do at this point. The nurses seem to have found a good balance of meds they can give her, and are attentive to the signals that her body gives that indicate she could use more meds.
I wish it could be next week now!
We didn’t get our favorite nurse today, but we got our other favorite 😆. I truly feel so lucky to know these nurses who are so passionate about their jobs, who save my baby and my sanity quite often. I will miss them when we’re gone!
We’ve started to let ourselves think and imagine more about what life will be like at home with Annelise. I try not to get too ahead of myself. We still have the shunt to heal from, the chest tube to get rid of/ Chylothorax to get over, trach to heal from, and g-button to be placed in her abdomen for feeding... then once that’s all done... we’ll find out more about her need for the ventilator, and start talking about leaving Omaha!
That’s still a lot to get through... praying that all infection stays away so that Annelise can fly through recovery. Praying for comfort for her surgery sites, chest tube, and for her empty tummy right now too. They will likely begin feeding her my skimmed breastmilk on Monday. I’m praying that goes as planned and they can take the chest tube out soon.
I’m thankful for the peace about getting the trach that Kevin and I have been given. I’m definitely not going to think that I can speak to what it’s like to be a “trach mom” at all yet. But I know that we’ll get through the learning curve as time goes on, and I’ll breathe easier myself as I get better at practicing giving every part of Annelise’s being to the Lord, meaning I’m going to give Him her eyes, and the anxiety around any vision problems that she might have... moving to her brain... any seizure issues that will pop up in the future.. mouth... giving away the stress of the future decisions regarding her cleft lip...I’m giving charge of that to God, and recognizing that she is His first, and mine next. It’s like the Matt Hammitt song “I Couldn’t Love You More”... that goes:
“You are mine for a moment
But you are His
Forever His
And in this life
I am holding You
But in His arms you live“
Today was a good day😊. We got to see a little smile on Annelise’s face while she was sleeping, and it’s just so fun to look at her cuteness! We’re in love 🥰
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