The impossible boy
9/25, Jon
Breen will be 8 months old on Monday. It’s impossible. He’s impossible.
Well, he also turned 4 months old on the 20th of September, because his original due date was May 20th. So he’s “4 months adjusted”, meaning you’re supposed to think of him as a 4 month old baby and base his development on that of a 4 month-er.
However, he shows signs of being an older baby, like there’s talk of maybe him getting teeth in. Something that wouldn’t normally happen until 6 months. But that’s OK because he’s 8 months old. But he’s also 4 months old, but maybe he’s in between?
(I saw a meme the other day on a micropreemie forum that said: “You know you have a micropreemie when it takes you half an hour to tell someone how old they are”)
Our road ahead is unclear. Breen has currently stalled out at 5 liters of O2/minute through nasal cannulas. He hasn’t gone up, but he has shown no signs of going down either.
Dr. L had a long phone call with Erin and I a couple weeks back, after Breen went up from 3.5 to 4 to 4.5 to 5 in short order. He made two things clear:
- This is not Breen taking a step back.
- Breen is going to need a lot more time.
To start with, #1. I mentioned this in a previous blog, but it’s worth repeating. Breen is not working harder to breathe, his breathing rate hasn’t changed, so he’s not really losing ground with his breathing ability. What’s actually happening is that he’s getting so big!
A better way to think of his O2 needs is liters of flow per kilo. Of weight. We were at 8 liters of O2 when we got here, and Breen was just about 4kg. So, he needed 2 liters of O2 per kg. Now he’s at 5 liters, and he is 6.3kg, putting him at just about .8 liters of O2 per kg. So he’s more than halved his needs in just under two months! This is incredible. Breen is incredible.
But this also puts us in a weird limbo. The more weight he gains (and he is still gaining a lot of weight, even on his diet!), the lower that liters/kg ratio gets, the better Breen is doing, the better his lungs are doing. But that will happen even without weaning his flow, which we need to do in order to take him home.
Which brings me to #2. We need to wean a lot before we can take him home. Dr. L told us that you don’t get to take a baby home until they are on 1/4 liter, possibly 1/8. That is approximately forever away. Before this phone call (and before we fell back to 5 liters), Erin and I thought we were a few miles away from the finish line. Now it feels more like the finish line is on one of the moons of Neptune.
We thought we were near the end of a long and grueling hike, and we just had to take a water break, eat a few almonds, rest our feet, and then muscle our way to the summit. Now, we’re wandering around Home Depot with blank expressions, trying to see what we can cobble together into a rocket ship that will get to the outer reaches of our solar system.
It’s impossible.
But Breen is the impossible baby. None of this should’ve ever worked, and here he is, 8 impossible months later. 8 months after a month after Erin’s water broke. 9 months of miracles. 9 months of impossible.
On that same phone call with Dr. L, he started to talk about trachs. Not to say that he was recommending Breen get a trach, more that some parents might want to bite the bullet and get a trach since you can go home on a trach which can provide much more oxygen support than 5 liters of flow through nasal cannulas.
So he asks us, are you still committed to bringing Breen home without a trach? It’s a tricky question, because until that moment I always considered a trach as something medical that either “had to happen” or “didn’t have to happen”. Not an optional choice that we would make for our family.
Breen was extubated on June 4th, and we were on “trach watch” for months. I guess I thought we were off trach watch, but apparently we just went from “Extreme” to “Low”. Like one of those Smoky the Bear fire danger signs.
During that call, I say back to Dr. L: We have heard from multiple health care professionals that kids grow new alveoli and new lung tissue for the first five-six years of their life. Those new alveoli get scarred if they are grown while on any kind of ventilator. So for those first 4 months of Breen’s life, he was growing new alveoli but they were getting damaged by the lifesaving ventilators he was on. Since extubation, his new alveoli have not been as damaged, and will serve him better for the rest of his life. So if we were to decided on a trach today, wouldn’t we be harming his longterm lung health by putting him back on a vent?
The doctor agreed with this, and went further to say that trach kids often have other issues including higher risk for infection, pneumonia, and complications from surgery. It’s a devil’s bargain. If we were to go the trach route, we may get him home sooner, but we’d be compromising his long term health. Not to mention he might get even more complications from the trach, and the bargain wouldn’t even pay off in the short term.
We followed up with Dr. O today about this, and she was a bit more measured. She mentioned that there is a form of tracheal O2 support that provides passive flow rather than a ventilator. This would protect his alveoli. However, there’s no way to promise that after being re-intubated for surgery, get the surgery, and recover from the surgery that he’ll end up on the flow rather than the vent.
There’s also no way to know how his body will react to the trach surgery, how long he’ll take to recover, or how well he’ll adapt to it after breathing on his own for so many months. It feels like a huge gamble.
Also, in order to do the trach, we’d have to get back-back transported to SLC to get the surgery, and we likely wouldn’t end up back in the NICU, but the PICU (pediatric ICU). There’d be no way of knowing how long we’d have to be in SLC or if we’d ever get back-back-back transported home to Portneuf.
There is no real decision here. We gotta get to Neptune.
The real danger is if we totally stall out. Dr. O suggested a conference call with Breen’s pulmonologist back in SLC who has been following up with him these past few weeks. We could discuss it with her as well as Dr. O. Perhaps the pulmonologist will be able to articulate to us what “stalling out” looks like.
How long would we be willing to wait on this current timeline? What would make it obvious that he needed a trach to be able to go home? Is there a world where he is never able to come home? Or are we talking about February? June? August? 2023? It’s maddening. It is impossible to contemplate.
So we wait. We visit our son in the hospital. We leave our son in the hospital. We get the quizzical and suspicious looks from the door screeners on why we don’t have a bracelet for our son in the NICU. (“Because he’s 8 months old”… “Well, let me call up to the NICU and confirm”…)
We get to the NICU ward, and scrub Chlorhexidine gluconat into our arms and hands and fingers. We trip over wires, tubes, swings, poles, toys, wheels, cribs, mats, chairs, nurses, and our own feet in Breen’s room. We pick up our son who has 3 wires connected to his chest that dangle down and connect to a 3-pronged monitor, and an O2 monitor that is wrapped around one of his feet, a large tube connected to his nasal cannulas, and a G-tube that is hooked up to two tubes for his feedings and a vent bag.
These wires and tubes get knotted together, get tangled up below our feet, get stuck in the chair, get stuck in the crib, get caught in his toes and he cries out. They get caught everywhere.
The screen that monitors his heart rate and O2 saturation makes a terrible sound every time Breen’s O2 saturation falls below 86%. Or gets above 97%. Or loses the signal. Or his heart rate goes below 100bpm. Or his breathing rate goes above 120 (which the machine thinks is happening when you lightly pat his back to soothe him). And this alarm sound is somehow a combination of a fire truck and the sound you hear on a 1970’s game show when the contestant gets the answer wrong.
The alarm goes off constantly, then is quiet for minutes at a time as you find some tiny slice of peace in the recliner as Breen sleeps deeply on your chest. Then the alarm explodes back into the room suddenly, ripping you from your brief delusion that you are home with your baby.
We call the nurses during all hours of the day and ask how he’s doing. How are his O2 needs? Did he poop? Is he sleeping? Is he gassy? Thank you for taking care of our son.
The nurses dote over him, love him, adore him, care for him. The doctors are incredible humans who consider him a growing developing baby and not just a patient. The therapists are dedicated and passionate to keep him stimulated and working towards developmental goals as he is stuck in respiratory limbo. The RTs and dietician work to keep him breathing and growing.
The Portneuf community is astounding to us with their love and care for our son. A unique whale of a baby who is here for a long spell, in a NICU full of tiny ones who are born and leave here in a blink of one of Breen’s luscious eyelashes. (But we know all too well that what feels like a blink for Breen and his parents is an arduous ordeal for that other NICU family. Any day in the NICU is brutal, there’s no easy NICU stay).
His aunties and uncles. His NICU family. Reunited with his original village. He needs them, they care for him. We need them, they care for us. And yet all we want to do, all we long for, is to take him home.
Erin said something like this to me the other day: “Just give us a date. Even if they said it’ll be July 37th, that’s fine, I can wait. But I can’t deal with no timeline.” It’s true. If, after Erin’s water broke, they gave us a deal that Breen would go home after 1 year in the NICU, we would’ve taken that in a heartbeat. But 8 months into that deal, it feels impossible.
Impossible Breen. How can we keep doing this? How has he done any of this? How did the doctors, nurses, surgeons, therapists, RTs, and company do any of this? How did it work? Why did it work?
How much longer…
It’s unlikely to happen in the year 2021. I cannot say anymore, because the way is cloudy. Well, the way is to a Neptunian moon, so the way is dark and unknown, and really really really far.
So we wait. And we attempt to squint at the hospital in order to attempt to enjoy our time there. A hospital, even a hospital staffed with extraordinary loving and brilliant humans, is a really difficult place to feel joy. It’s a difficult place to be. Even after a “great” day at the NICU, Erin and I feel hollowed out. After a rough day at the NICU, we slough home like debris in a rainstorm.
We toggle between intense and infinite gratitude and visceral animal-like sorrow and longing. Both are true.
—
The doctors and therapists have been sympathizing with Breen being stuck in one room. If he was a four month old baby at home, he’d be on blankets on the floor being trampled by an older sister and dog. He’d be in the crook of our arms as we did chores, read books, prepared dinner, or napped on the couch. He’d be exposed to new and interesting rooms, smells, sights, and sounds. But here he is stuck in a room.
So they devised a way to put Breen in a baby carrier, hooked up to portable O2 canisters, so that nurses can walk him around unit! And we might put him in a stroller to perhaps even take him on a walk outside!
Here he is on a joyful jaunt with the incredible physical therapist who really rallied for this:
—
Also, the occupational therapist really wanted to start feeding Breen some rice cereal, which would be age appropriate for a 4/6/8 month old baby. They have tried feeding him very small amounts every day mixed with breast milk and he’s really enjoying it! This dude wants to eat! Well, a couple of times he was so tired that he gummed one bite and then fell asleep. They have been giving him milk drops (3 ccs from a syringe) for months now, and all the signs indicate that once we get his O2 flow low enough to safely take a bottle, Breen is going to be game for it!
It’s not safe yet for him to eat large amounts of milk or cereal since he’s still too high on the O2 flow. There’s a risk of aspiration with so much oxygen flow streaming down through his nostrils. But these little tastes have been really good to lay the groundwork for him eating in the future.
—
Also.
Also… Breen has two hernias. One in his groin area (inguinal hernia) and one on his belly, on the right side of his surgical site. It has been habit for us and his nurses to “reduce” the hernias, which means you lightly put pressure on them in order to push the intestine back in. It makes a satisfying gurgle sound, and provides great relief to Breen.
His belly hernia has been feeling hard recently, so Dr. L decided to do an ultrasound to see what was going on. It is definitely not a hernia anymore, because the bowel is back inside (a very good thing)! They don’t yet know exactly what it is, but they think it could be a lipoma, which is a fatty growth. So the theory is that maybe this lipoma grew as a way to close off the hernia? The doctors still aren’t sure, and have called down to SLC to get a second opinion. No one is very worried about it, and think it might just go away on its own.
—
Nonna is in town helping us with Nora, and they played while both Erin and I were at the NICU today. It was amazing. It was devastating. It was beautiful. It was agonizing. Our children spread all over town. An impossible math equation: you can have Mom+Dad, Mom+Nora, Mom+Nora+Dad, Dad+Nora, Dad+Breen, Mom+Breen, or Mom+Dad+Breen. But all of those added up doesn’t quite get us to a family of four. Doesn’t quite add up to The Armstrongs.
Erin hugged him for a couple hours, and he slept and slept. A deep and heavy sleep. It was beautiful to watch them.
We make him laugh. We give him a bath. Back massage. Kisses. Songs. Stories. Lots of love. Compact love in a miniature room, tripping over wires, chairs, each other, and nurses.
Our baby, trapped in a hospital. Eight months. Our beautiful boy Breen. This impossible boy, stuck in an impossible situation. It’s impossible that he’s still here on earth.
It is also impossible to keep dragging ourselves up to the NICU day-in, day-out. With no end in sight. With no way of knowing if we can hike to the summit, or if we should be working on our rocket ship.
Nora Poetry Corner:
- *After I’ve been putting her to bed for an hour, and she’s trying every trick in the book*
Nora: “I’m thirsty! I’m hungry!”
Dad: “You just had a big dinner, you’re not hungry”
Nora: “I am hungry!”
Dad: “All done Nora, goodnight”
Nora: “I want Mommy”
Dad: “Are you hungry, or do you want Mommy?”
Nora: “I’m hungry for Mommy”
2. *Daddy sings*
Nora: “you can’t sing, you can’t sing! The doctors are mad because you sing!”
3. *Nora telling me a long story to me as she is in bed attempting to go to sleep*
Nora: “… and then Mae and Satsuki and Kiki and Nora went to Raymond Park, and there were no kids there, and Olive….the sudden…. they weren’t sad anymore!”
4. *Erin, Nora, and Dad were watching the livestream of the ISCS concert tonight, letting Nora stay up a little late and watch the concert. In the middle of the second piece, she declared that she had to go potty. Dad paused the YouTube link, so Nora could go potty*
*Nora goes to the potty*
*Dad, unsure if pausing the livestream will let them continue from that same place, presses play for one second to check*
Nora (from the bathroom): “I think I heard one note!”
5. *Watching the ISCS Concert*
Mom, as the camera focuses on different performers: “Do you want to play cello or piano?”
Nora: “I want to play cello and piano!”
Nora: “Actually, I can play the cello and Daddy can play the piano!!” *after a pause, camera focuses on the symphony percussionist* “Actually, I want to play the DRUMS!”
