8/22 - Stopped feeds again

Remember yesterday when I was being dramatic and talking about how important it is to suck all the goodness we can out of the good days because we don't k ow what tomorrow holds?
Wellllll, after Annelise's 4am x-ray, they stopped feeds again because the fluid is coming back around her left lung.  Stopping her feeds should stop the fluid, so they don't have another x-ray planned for 5 more days, when they will consider starting feeds back up for the 4th time.  The current neonatologist wants to get this chylothorax issue resolved before we talk about her final planned procedure, the g-button.
Today:
❤️ Annelise remained on 6-hour sprints from the ventilator on the heated trach collar.
❤️ She had a grumpy night and morning of falling asleep, but not staying asleep... Until I held her, and then she took a 2 hour nap🥰 Thanks for helping me feel useful, baby girl!
❤️She got some foam rolls from the Occupational Therapist to wear half time throughout the day to help gently stretch her hands to make them not so clenched.

❤️❤️❤️❤️Biggest deal of the day is that Kevin and I changed her trach for the first time!
I took the old one out, and Kevin put the new one in and did an amazing job! 👏🎉💜😁
I couldn't help but cry happy tears of relief when it was done because we helped her and didn't hurt her!!  I know there are a bazillion people who do trach changes all the time and say it's no big deal.  I hope that will be us soon, but for now, the first ones.... It's a big deal!
We are becoming new people, getting comfortable with something that was so uncomfortable before.  I remember being pregnant and being so sure that being a trach mom would be too much for me.  So happy I was wrong! 😊. It's part of those mercies that are new every morning.  So grateful to God for going before us, being present with us, and being our strength. ❤️  The timing of the chylothorax issue is in His hands too.  We can be confident that God sees Annelise, knows, and loves her even more than Kevin and I do, which is a lot!! I can be broken at the delay in feeding her breast milk, and fully confident that the Lord will show up and carry us through this at the same time.
I got a onesie that came in the mail and is too small for her already (love that problem!) that says "God has big plans for me".
The words are true for us all, really.  I can't wait to see His plans unfold for our family. 💜