4/24/21, erin, cloudy Saturday, Pocatello, Nora singing next to me, Finn’s chin on my knee.
Nora and Grandpa came down to see our SLC house on Wednesday, and brought me back to Pocatello on Thursday. I’m getting my second shot today! Jon is heading to SLC now, and his dad will drive Nora and I back on Tuesday.
We are enormously grateful to our family for the immeasurable gift of their time and energy with Nora at home, to our friends and neighbors who will care for our pets, to so many of you for the prayers, gifts, intentions, and donations. Thank you.
Breen is doing extremely well on his dexamethasone treatment. This is the same steroid he benefitted from before the pneumonia knocked us back. When was that? Mid March. He’s no longer taking albuterol or hydrocortisone.
His stool output into the ostomy bag is high, so they will not increase his feeds today but they will start re-feeding into the lower bowel.
Since he is 36 weeks, they are leaving the top of the isolette open all the time now. Open Open, not just uncovered. He is maintaining his body temperature and acclimating to the busyness of the room. The team talked about moving him to an open warmer (and leaving the warmer off) or even a crib, but kids with as many tubes and wires as Breen usually need more access.
He is loving the conventional ventilator since Thursday, and they are weaning his settings so much, there is talk of maybe extubating in the next few days(!?!?) As Jon says, I’m not holding my breath. Pun intended.
If he is able to lose the breathing tube, he would be on a CPAP with a mask providing air. The trick is with his iffy intestine situation… air can squidge into his belly instead of just the lungs. It doesn’t always happen, but it’s a concern. They would need to be careful to vent his tummy.
All of this is good news.
Last time we received a patch of good news, I forgot to brace for impact.
Research shows that people who are aware of an impending collision and have time to brace for impact have better long-term outcomes and less injury. So you should always brace for impact. … If you remain relaxed, those ligaments, discs and nerves will take more of the force, resulting in more injury.
(Not sure if that’s true. But I definitely did not brace last time. I typically just bite the inside of my cheek and tense a few stomach muscles.)
There was a moment with the family this morning that had a wisp of forever on it.
Jon told the NICU nurses that we have to get our joy in microdoses.
Nora is now playing a puzzle box like a drum with two plastic golf clubs. She is still singing. A song she makes up as she goes. I’ll transcribe a snippet:
“We can do it first at allllllllll! Everything is just riiiiiiight. Oh myyy oh myyy! Monkey! We can’t care what it’s like. We doooooo!”