Another Trip to Dear ol’ Salt Lake
6/12/22, Jon
We traveled back to SLC last week for two appointments: Neurology and an initial meeting with the INTAC clinic which cares for children with GI issues. (Erin likes to call our new GI doctor Breen’s “Gut Gal”)
So we loaded up the car to the brim with everything from oxygen tanks to a Peppa the Pig Doctor play-set and embarked southward on the haunted highway for the fourth time since Breen came home from the NICU. It took approximately two weeks to pack, or at least felt like it. I think it might be easier to pack up the circus…
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We got a hotel in Cottonwood Heights, our old stomping grounds just south of the hospital, rolling into town the night before our first appointment around 9pm. Breen was feeling cooped up so he wanted to crawl off the car ride. Nora was a bit out of sorts herself and no one got to bed until nearly midnight. I ended up putting Breen in one of the beds with me and building a pillow barrier around the edge. I started crying lying there next to him, looking at him sleeping so deeply and peacefully. As Erin and I constantly say to each other: How did any of this work?
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Monday morning was neurology. Nora was fast asleep by the time we had to leave, so Erin and I decided to let her sleep in and Breen and I headed to the appointment. Breen was in good spirits as I stripped him to his diaper and he got weighed and measured. He’s now 19lb15oz and 28.4 inches tall. He’s still a tiny dude according to the charts. (1st in percentile for height and 1st in our hearts!)
The neurologist, Dr. O, came in with a team of therapists to asses Breen. Dr. O was his neurologist in the NICU, the one who ordered an MRI and discovered small patches of PVL, which is often referred to as “swiss cheese brain” or a white-matter brain injury. She also said at the time that the PVL was insignificant enough to not warrant much concern. She said this kind of injury was more associated with learning disabilities than anything like cerebral palsy or reduced cognitive functioning.
After the full assessment Dr. O told us that she wanted to discharge us as Breen didn’t need significant neurological intervention. She said that we would continue on with a group of physical, occupational, and speech therapists who would check up with him every 9 months or so to track his progress. This is on top of the wonderful physical therapy Breen gets in home from his PT, J. As we add OT and ST to the mix for in-home care, these folks at the hospital outpatient place will collaborate and track. All great things.
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Breen and I came home to find Nora and Erin playing in the outdoor pool (it was quite hot while we were in SLC). I swapped with Erin and played in the pool with Nora while Erin tried to put Breen down for a nap. She wanted to count how fast I could swim to the end of the pool and back, readers will be proud to know that I did it in 20–12 seconds.
Nora, with a bit of trepidation, also really enjoyed the treadmill in the exercise room.
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In the days before we left for SLC, Erin had reached out to several of our beloved NICU angels and aunties to see if they wanted to meet up at a park after our first appointment. That evening, eight of Breen’s best friends from the medical field met us at Sugar House Park for snacks and hugs. Breen rolled around in the grass or powered down some mandarins or got scooped up by nurses. It was joy. So wonderful to see these incredible women again, and so great to have them see him in the wild.
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We all got to bed at a reasonable hour that night, everyone was exhausted. Everyone slept in the next morning, catching up on some much needed sleep. The appointment that day wasn’t until after noon so we took our time gathering up and packing away the circus to go see the Gut Gal and then home.
All four of us came to the appointment that day, and Nora was mostly good. It’s tricky for a 4 year old at a doctor’s appointment where no one is talking to you or even about you!
The Gut gal(s) didn’t say anything groundbreaking, if anything they weren’t particularly impressed with Breen, or should I say they weren’t impressed with how bad his gut is. They were plenty impressed with Breen the man, just not his complications. Frankly, it was refreshing to have doctors not be blown away by how sick Breen is. It’s kind of fun that he’s not quite in bad enough shape to catch the attention of specialists. This is a strange stage of his development I hadn’t anticipated: he’s in limbo between: “Perfectly normal healthy baby” and “Such a sick baby that seasoned medical professionals are taken aback”
He’s like a hardcore punk band that went mainstream. “I used to care for Breen before he was healthy. I was there for the picc line infiltration”
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And homeward we went! Aside from a Nora meltdown at a truck stop in northern Utah, it was smooth sailing. Everyone was wiped out after we got back, and to be honest, Erin and I haven’t finished unpacking (physically, emotionally, or energetically) from the trip.
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Recently I’ve been reading short stories from a Disney Princesses book to Nora, who has seen some of the movies the stories are based on. The way the book works is that the stories are usually set after the end of the movie they are based on. This concept has blown her mind as it extends these stories past where she thought they ended. Yes Tiana and Prince Naveen turn back into humans at the end of “Princess and the Frog” and lived Happily Ever After (spoiler alert), but in this story, Tiana is trying to balance running her thriving restaurant with being there for her friend Charlotte. (Who’s honestly not a very good friend). Now when I tell her bedtime stories and end with “…and they lived happily ever after” she’ll ask: “Then what happened?”
What happens after Happily Ever After?
We brought our son Breen home in October of 2021 after 9 months in the NICU. Then we lived Happily Ever After.
Happily Ever After the NICU, we brought him home with bad lungs, oxygen concentrators and tanks, cannulas, miles of oxygen tubing, holes in the white matter of his brain, a short gut with surgically repaired intestines, a scar where his belly button should be, a g-tube, a feeding pump, a large scar on his back from the emergency c-section, startled wake-ups when the feeding pump or the oxygen saturation probe would scream and break the night, and a nasty inguinal hernia that we had to reduce multiple times a day.
Happily we mixed foul smelling iron drops into thawed frozen breast milk. Breast milk pumped by his hero of a mother. Frozen breast milk from bottles with dates scrawled on them in sharpie. Dates that brought back traumatic horrors from so many of the rough patches he had (“March 23rd eh, I believe that was the weekend they thought he got NEC again and my wife and I were in different states”).
Happily we introduced him to Nora, and attempted to teach her breathing exercises so she could cope with his loud raspy cry. Happily we held them both, for the first time ever. Happily Ever After, a family of four.
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Here we are now, nearly 8 months home from the NICU, and we happily watch him crawl around like a bandit playing and handling everything within his grasp (as well as several things outside of his grasp). Crawling with a maniacal fervor, (as if he lived in a box for 9 months or something) as he wants to absorb the entire world as completely as possible. Happily we untangle him from oxygen tubing wrapped around him multiple times. Happily we untangle his miles of tubes from toys, tables, containers, dogs, guitars, in ways that break my conception of physics and dimension. Happily we practice walking with him, holding his hands in ours, as we drag the 2lb oxygen step-downer with a spare pinkie, or a couple toes.
Happily we took out his G-Tube in March.
Happily we watch him laugh at his sister’s antics.
Happily we feed him and watch as he feeds himself.
Happily we pack up the circus and drive to SLC time and time again.
Happily even after we get told by the pulmonologist that he’ll likely be on 24hr oxygen support until he’s 3 years old adjusted (May of 2024). “What do we do when he starts walking” we ask. “There’s not really a great answer for that” she says “At some point, he’ll weigh heavier than the small sized oxygen tanks and you can put them in a backpack. For now, you’ll have to keep untangling him from his tubes”
But even that news is happily received. They thought he would need a trach vent. They were pessimistic that he would ever get extubated. They were pessimistic he could stay on the CPAP when he did. Happily Ever After what could’ve been but wasn’t.
All news is received happily ever after. After Erin’s water broke. After they said there was very little chance he would live and we should consider inducing and saying goodbye. After she laid as still as possible for four weeks in order to give him any chance at all. After all the amniotic fluid was gone and somehow the chances were even worse. After his heart rate started crashing and Erin’s life started to be in danger due to a potential infection. After the OB cut him out heroically to give him a chance, but cut his back deeply in the process. After the NICU doctor called me in to tell me that they were doing what they could, but he would likely die. After he didn’t die.
After he got NEC on day 13 and they said that he would likely die, this time for real. After he flew on a helicopter. After he coded for hours. After he coded again. After he coded again. After six surgeries. After multiple infections. After Picc line infiltration. After ……. After…
But you know all these bedtime stories. All these dragons slain. These wicked witches and other enemies defeated. And we told you all we would live happily ever after.
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Happily Ever After our nerves are shot. Both Erin and I scream bloody murder whenever so much as a spoon drops. Cry into puddles during the opening to “Up”, or even a particularly cheesy commercial. Not being able to sleep or not being able to wake up. Unable to concentrate on simple tasks from time to time. Our bodies and minds forever changed. Ever after we are transformed. Happily to do so to bring our boy home.
Happily we both go to therapy.
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There are many days I go about the routine of inhalers, meals, diapers, books, play, music, naps. On those days, he’s just a baby that happens to be on a cord (like one of those cheap remote controlled cars with the 8ft cable that connects the car to the controller).
Sometimes his cry or his whines pierce my soul to the point where I can’t think straight. But many times, at least once a day, I’ll look at him and I see everything he endured. I see his smile as a result of his NICU battles rather than in spite of them. I hear his cry or his babbles as the tongue of miracles, as the language of spiritual transcendence. I stand before him in awe of this tough little boy. This brave incredible Breen.
I see him as a member of a growing but new group of humans that never used to exist. Preemies and congenital babies that never used to have a chance.
Here they are with us now. After enduring unimaginable suffering and discomfort at such an unimaginably young age. More so than most of us will ever know in our lives. Here they are after surgeries, and surgically placed ostomies. After surviving the hell of morphine-withdrawal as infants. After months of conscious intubation, countless foot pricks, and blood transfusions. New humans just dropped in our world, a new cohort. I can’t wait to see what they teach us. Our son has taught us so much so far.
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And now I know what happens after Happily Ever After. It’s hard. It’s work. It’s frustrating and it breaks you. The PTSD is real and insidious, popping up in strange and new ways. Good habits my wife and I thought we established are in tatters. Bad habits we thought we defeated arise anew.
Happily Ever After is more beautiful and blissful than anything that came before it. It is also more difficult and agonizing than anything that came before it.
Maybe the most important word in the phrase isn’t Happily, but After. As in After NICU.
We are 8 months A.N. and we are tired. We are grateful. We are blessed. We are home. We are a family of four with two beautiful children that fill our hearts with more joy than I ever thought existed in the world.
Long live Breen Richard Armstrong.
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Nora Poetry Corner:
Nora: “Sometimes I taste the sugar water, because I like sugar, and I like water. Because I’m part of a hummingbird. Y’know?
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*Nora at the second appointment being a bit impatient and bored as her parents talk to the doctors about Breen*
Dad: Nora, please be patient as mommy and daddy talk to the doctors
Nora: But it’s too much talking!
Mom: Well this is the part of the appointment where we talk
Nora: Let’s do the part where we don’t talk
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*Nora is playing an imagination game with our good friend E, but it’s getting to be bedtime*
Dad: OK Nora, this is the last ocean adventure with Auntie E, then we go upstairs to brush teeth and get ready for bed. OK? One more, then bed
Nora: OK
Mom: Yeah, because I just told you one more a while ago, and you’ve done three more
Nora: OK, three more! *runs away to play three more ocean adventures with Auntie E*
Mom: No wait!
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Nora: After Breen is 1, he’s going to be 2. And then he’ll be 3. And then 4. And then 5. Then 6, then 7, then 8, then 9, then 10, then 11, then 12, then 13, then 14, then 15, then 16, then 17… then 26, then 27, then 28, then 29, then 20–10, then 20–11, th…
Mom: 29, 30 Nora
Nora: Then 29, then 30, then 31, then 32, then 33, …then 30–10, the…
Mom: 30, 40 Nora
Nora: Then 30, then 40, then 41, then 42, then 43, then 44, then 45!
