4 Months Old, and More Good News~
May 26, Wednesday, erin. Oops wait it’s Thursday now. May 27.
Breeny’s blood vessels are growing healthily, his doc says we are over the hump, out of the danger zone. If he was going to need eye surgery, it would PROBABLY be very obvious by now. (Usually the worst appears by week 38, and we are at 41!) WAHOO!
There was another poo, a couple days after the first. Then a TON OF poo over the last 24 hours. Very very very good poo. Finally moving meconium through. He has been able to get mother’s milk directly into tummy through the G tube, it’s working!
Breathing well, mostly. New tube has been working well. Desats started to feel like a thing of the past, but he still needs to get secretions out by-way-of-tube, which requires a medical professional to suction him out. Which often begins with a civilian parent saying, “Sorry! He’s feeling rattly again.” And a medical professional says, “Well, his O2 sats look okay…” and then a few moments pass, and then a desat, and then a suction. Or two. Or three. And then he’s okay, mostly.
No, we have not heard about any discharge date. It is too hard to say. One friend told me she was imagining a certain month which-shall-not-be-named. but I don’t know if it’s because I told her that a nurse once offered it as a goal. Or did I recklessly mentioned it in a blog? I am in no mood to research the blog. But please team, don’t hold us to a date.
I tell the docs I won’t yell at them. I beg them to make guesses: if (when) he’ll need (be ready for) a trach, what do they imagine his nutrition needs will be like? But I haven’t asked them any departure dates. Just that one NP J mentioned a random month’s name once. Guaranteeing that it would change.
Tonight, I met two parents who are getting ready to take their (chronic lung disease 24-week premie) girl home next week! They said that a couple of times, nurses have tried to set goal departure dates. And it was heart wrenching when those dates came. And went. Ouch. Yes. That is too imaginable.
I am sapped. Drained. Fried. Burnt. Shredded. Eviscerated.
Today is our 4 month birthday.
5 pounds 13 oz.
Tired. My nerves are shot.
All we want to do now is hold the littlest Breen. He comes home to himself, he opens his peepers. He snuggles true.
But the noise, noise, noise of the NICU wears us thin. Thinner. Thinnest.
We want to be all together. We want to hold him, but without a respiratory tech and a nurse and a lot of tubes and wires and pins and roommates. We find ourselves falling flat, and we are caught, again and again, by gratitude.
We are grateful for those nurses and RTs. We are cheering emotionally for our roommates. We are astounded by the team.
But still, so awfully, shockingly slamming into a wall. Jon is downstairs reading to Nora, but I think I can speak for both of us when I say this. I have hit a wall. I have hit a wall before, and still showed up to the NICU. Swapped spots with Arm, toddled around with Noreen. And I will do this again.
Four months is a lot. The parents of the 24 week preemie I just met have been here:
Four hundred and sixty days.
…
“How, how, how? What did you do when you hit the wall at month four or five?”
The mom (rushing out with the dad to relieve their sitter and rejoin their older children) said: Trach parents’ online support group really helped.
The guest speaker at parent hour said humans are social animals. We decrease our body’s anxiety chemistry every time we engage with other people.
Family, sangha, ISU, bandmates, teachers, students, neighbors Poky, neighbors SLC, therapists, social workers, hospital employees, friends from every chapter of our lives. Praying strangers.
Community.
Team Breen.
…
Nora poetry corner:
- Watch out, Wagner! I’m going to bed.
- *Playing with foam letters in the tub.* I got you some letter movies to watch.
- Me: How long should I pump? Nora: As long as you can! For Breeny!
4. I feel way much better.
5. *Stands up from concrete step where she’d sat in sprinkler soaked togs. Looks at the wet print.* Look at my art project! It’s a cloud in a nest.
6. *Biting some snack just so.* Look at my moon! I’m eating my moon.
7. *After a series of recent calls to nurses and mom and dad talk about Breeny’s recovery, Jon says, “What a good boy.”*
Nora: Is Breeny a dog?
