8/31 Saturday

https://youtu.be/yhyVW6sbZeA

Two steps forward, and here we go back again.  Annelise had a tiring day, but the little love wouldn't/couldn't sleep more than a cat nap here and there.  They changed a couple things this morning, so it's hard to say exactly what is going on and causing her to have lower oxygen saturation than she has had all week... Not to mention some concerning new behavior that is paired with the old eye movements that prompted the EEG that she got this past Monday.  The EEG was normal... but the doctors and nurses here have been very great at educating us on some signs of Seizures... and Annelise added rhythmic movements, and having her oxygen saturation go down during "episodes"... That wasn't happening until this afternoon.  Since Seizures in infants can look like "typical" behavior for a preemie or baby with brain abnormalities like Annelise... the nurse practitioner isn't jumping fully on board the seizure train yet... But I appreciate her looking into all the possibilities of what could be causing the change in behavior.  We are trying an easy quick test tonight of stopping her sprints on the trach collar, and putting her back on cpap mode of the ventilator.  So if the behavior stops... maybe she was tired and not ready for such long sprints so fast. If it continues, the problem is elsewhere.
I'm tired.  This is really hard.  My anxiety knows how to take the little unknowns and just take off full sprint. It's emotionally exhausting to have to reign in my feelings and thought process constantly.  I love that baby so much!
Waiting for answers is quite possibly the worst.
I have no idea what it will look like to have God strengthen us tomorrow and the next day.  I'm tired, I want Annelise to be able to rest and grow as healthy as she can be. I expect that God will show up in ways that surprise me but shouldn't... because of who I know God to be, and the power that He has, as this song reminds me, to move mountains with a word.  Surely He will use some of that power to fix my broken heart, to carry me in my weakness, and to continue to display His glory through our precious girl's life!