When your baby is in NICU, nothing else exists. Life becomes a merry-go-round of hospital visits and late nights and breast-pumping and caffeine and tears and happiness that spins round and round until you’re completely disoriented and can’t remember what life was like before you had a baby in the NICU. The past is obliterated, the future is suspended, and the present exists in a strange sort of time warp.
Before all of this started, I was just me, an individual with typically selfish desires. But now I’m a dad, a father, a papa: selfish still in certain regards, yes, but a man with a fresh purpose, a man with a life to support, a man with a son, Conley, who’s lying in a hospital bed and has a challenging road ahead of him. So I do what I can. I grab coffee from the hospital cafeteria in the mornings. I stay up late to hold him against my bare chest, while nurses feed him mother’s milk through a tube. I sing to him (Mostly Radiohead, which my wife, Caitlin, discourages). I read to him (Zen Pig is my favorite book thus far). I try to teach him about the world, even though he wasn’t even supposed to be in the world for another five weeks, even though the world he’ll face will likely be much more difficult than my own.
Conley, God bless him, has faced the full wrath of the universe in his short life. In addition to being born six weeks premature, he also has an ultra rare genetic disorder called Van Maldergem Syndrome (VMS). If you haven’t heard of it, don’t worry: neither have most medical professionals. There are only about 20 diagnosed cases in the world, so literature on the subject is understandably thin. Some of the potential symptoms of VMS include clenched hands, intellectual disabilities, developmental delays and a whole host of other problems, both semi-predictable and totally unforeseeable. This disorder, in itself, will make life a struggle for Conley. But on top of all the potential impending challenges from VMS, the little guy also suffered a hypoxic brain injury (HIE) during birth. The doctors don’t know when or how it happened, but at some point his brain went without oxygen for 3-5 minutes, causing a moderate damage to his white matter. Now he’s at an increased risk of balance, muscle and coordination issues, in addition to potential intellectual problems. All of this, piled on top of his genetic complications. It feels like the universe is rubbing it in.
It’s been tough on him, on his mother, on me, on all of the friends and family who care about us. Caitlin and I try to make sense of it all: what we should’ve done differently or what we shouldn’t have done at all to keep Conley from suffering through this painful nonsense. It’s human nature to grasp for answers when the universe screws you for no understandable reason, but all of that grasping is wasted energy, I think. What’s done is done. Caitlin and I will grieve for a while, because that’s the healthy thing to do, but we won’t ascribe some deeper meaning to Conley’s strife — or at least I won’t, and I don’t think Caitlin will, either. We’ll curse his atrocious luck, then focus on what needs to be done to help him thrive in a world that will test the depths of his resilience. And the resilience of his parents, too.
With all of our son’s uncontrollable problems, I’ve found solace in routine and repetition. Breast pumping has been the backbone of our days since Conley’s birth. Caitlin has to produce milk every two to three hours — “like a prized goat,” as she put it — so we make an event of it. I blast “Pump up the Jam” as she dons her pumping bra. I assemble her plastic “tit tools,” as I’ve named them, and help put them on her, as though she’s some kind of robotic milk factory. While all of this is happening, I’m also periodically dancing around the room, twerking and such, until Caitlin at least cracks a smile. It’s a small, silly ritual. But small, silly rituals are keeping us sane right now. Caitlin pumps for about 15 minutes, then I transfer the milk to a holding container, slap a label on it and document the milk amount on a “pump log” sheet. Then I place the tit tools in the washing bin and soak them in hot soapy water for about 20 minutes. Rinsing and drying follows. It’s not much, but it’s something I can control. The noises and other sensations associated with the process — the running water, the squeaking of the plastic tools, et cetera — calm me on a primal level, like the swirling hum of meditation music. At this moment in my life, I’m a firm believer in anything that temporarily (and healthily) relieves stress and anxiety.
Another thing that’s helping me cope with this, pardon my French, bullshit is recording sounds from our hospital experience and incorporating them into homemade music tracks. I’ve recorded myself reading stories to Conley, hospital noises, nurse chatter, Caitlin’s instructional breast pump video, my father-in-law talking about craft beers, Caitlin discussing the show Schitt’s Creek, me ordering a coffee, and countless other mundane and meaningful moments in an attempt to depict what it’s like to spend an inordinate amount of time in a hospital. This project is not a sentimental one. Most of the songs, if you can even call them songs, are melancholic in tone, with hospital beeps and melodramatic string instruments swelling in the background. Because of this, Caitlin finds them at best weird, and at worst abhorrent. Nevertheless, I continue to spend perhaps an unhealthy amount of time working on these strange songs, because the process puts my mind at ease. It’s similar to the breast-pumping routine, I think: it’s the sense of control that makes it therapeutic. To pluck these disparate sounds out of thin air and arrange them into a semi-coherent musical narrative gives me the illusion of regaining meaning and purpose from a universe that’s often anything but meaningful or purposeful. The quality of this music is a moot point: the healing lies in the act of creation itself. And at the end of the day, I’ll have constructed an artifact that’ll sear this strange moment into my memory forever: a sour fruit of my nervous labor.
To walk into the NICU and see Conley right now is to witness a newborn that’s doing quite well overall. Most of the tubes and lines that were sticking out of his body during his first few days of his life have been removed. All that’s left is a feeding tube in his mouth and a nasal cannula providing supplemental oxygen, and both of those are slated to come out within the next couple days. By all current measures, he’s a happy and healthy baby. He’s responsive. He cries, he moves his limbs about. A few minutes ago, as I was standing over the little guy, he suddenly opened his eyes and looked back and forth between the nurse and I. He did this for almost a full minute. It was the longest I’d ever seen his eyes. “He’s tracking us so well,” the nurse said. “He knows we’re here.” Given his brain injury, him knowing we’re there is a huge deal.
Yet there looms a darkness in his future, an anxiety around what problems — if any — will arise as he approaches certain developmental milestones. Just Google “HIE” and you’ll see what I mean. I should have learned years ago that it’s never a good idea to Google anything about a medical issue, because you’re only going to find the worst of the worst. But it’s a natural action: inquiring parents want to know what their child may be in for. Yet no matter how many Google searches we conduct, we’ll never truly know what the future holds for Conley, because every child is different. The doctors and nurses have stressed that they’ve seen some newborns with severe HIE recover well, and other newborns with mild HIE struggle mightily. There’s just no way of predicting, with 100-percent accuracy, how the human mind will develop. We can try to get the best picture possible, through MRIs and other medical technology, but as our neurologist recently put it, “these are all just guesses. We hope they’re educated, but still they’re guesses.”
From one angle, the unknown-ness of it all is infuriating, because the human mind craves certainty. But when viewed from another angle, all of these unknowns are actually beautiful, because they leave room for hope, for possibility. The doctors have told us that the best thing we can do is engage his mind: read to him, sing to him, play with him. Actively help him create new neural pathways to overcome his devastating setback. To know that we, as parents, will have a hand in helping our child recover from this awful injury is empowering. And feelings of empowerment are golden leaves in times like these.
There’s a poem that Caitlin recently shared with me that perfectly captures the feeling of having an atypical — is that the right word? Maybe not — child. It’s a popular work, essentially required reading for parents of special needs children, so maybe you’ve heard it. The author, Emily Perl Kingsley, equates the experience of getting pregnant to that of planning for “fabulous vacation trip to Italy.” You get on a plane, fly over the beautiful blue ocean, you think about all the wonderful sights you’ll see in Rome or Florence, or wherever you’re going. But when you land, you realize you’ve been duped. You ain’t in Italy. You’re in Holland. At first there’s a lot of denial, a lot of bargaining, because you’ve wanted to go to Italy your entire life. Italy is what you planned for, Italy is what you packed for. And now you’re in…Holland? Seriously?
But after some grieving — OK, a lot of grieving — you accept this change in plans. You begin to appreciate your new vacation locale for what it is. It may not be as warm as Italy, not as fast-paced or sexy, but it has its own unique charms. Windmills, cows, et cetera. You know what I mean. The poem ends like this: “if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.”
But after some grieving — OK, a lot of grieving — you accept this change in plans. You begin to appreciate your new vacation locale for what it is. It may not be as warm as Italy, not as fast-paced or sexy, but it has its own unique charms.
“That’s all well and good,” I said to Caitlin. “But with this hypoxic brain injury, we’re headed somewhere entirely different. Perhaps Norway?”
“I don’t like Norway,” she said. “Too cold.”
“But the skiing, the hot choc..”
“OK, well, maybe not Norway. But we’re definitely not going to Italy. And Holland seems out of the question, too. So where the hell are we headed?”
I don’t know. We’ll figure it out when our plane lands.
I spent my last night in Italy eating a DiGiornio at a small table in a rustic cottage.
I snapped myself out of the daydream, yet again befuddled as to why I was considering Hemingway.
Claire Rousay has captured the moment by ‘enchanting the ordinary.’