The longest year of your life
I. “Ouch!” your wife cries out, her hips locking, hamstrings tight. “Was that it?”
You are holding a three-and-a-half-inch syringe inches away from her bare ass. Your clumsy hands, shaking, caused the needle to graze her skin. That’s the thing that hurts, the YouTube nurse said on the how-to video. Just get it in there, one quick motion, like throwing a dart. Easy.
“No,” you say, “Relax.”
You see the backs of her thighs soften. You pick your spot. The notes your wife’s OB-GYN shared with you advise you to aim in the upper-right quadrant of the buttock. Before you even begin to think about it, without warning, you flick your wrist forward, plunging the needle into flesh, an action that makes an indescribable thud. You want to apologize but you remain focused on the task at hand, pulling the plunger back and looking for blood. You see an air bubble, which is good. Blood would mean you missed the muscle. Blood would mean try again. You push that plunger in with all of your strength and slowly the thick, viscous oil, the medicine that you hope will prevent your wife from going into her second premature labor, seeps into her body. It always takes longer than you think it will.
When it’s all finished, you pull the needle out as fast as you can and you use an alcohol wipe and a little compression to sop up the droplet of blood that marks your point of entry. “Thanks, babe,” she says as she shimmies her pants back over her waist. She settles into a spot on the couch, unmutes the TV. Game of Thrones begins. You join her on the couch.
Your hands are still shaking. It is a small weekly ritual, one you have performed many times before, but it always leaves you a little rattled. You wonder when your life will be normal again.
You don’t know it at this moment, but it will be a long, long time.
II. It is your second trip to the emergency room in a handful of weeks. Your wife is in the passenger seat, dried blood wiped into long translucent swirls down the insides of her thighs and calves. She is shaking and crying and you have absolutely no idea what to say. She says she feels ridiculous, like this is somehow her fault. She apologizes, and your heart breaks a little.
You tell her your rehearsed, pre-packaged calm-down speech. You have given several versions of it since she got pregnant and things started getting…weird. You don’t believe your own words. The truth is, you have no idea if it’s okay, whether the baby is alive or whether your wife is healthy. You put the pedal down and switch lanes.
One of the triage nurses tells you that bleeding is common during pregnancy. Your smile, your flippant attitude, and your jokes do not deceive any of them. They spend their time around the broken, the dying, the healing. They know you are scared shitless. They wouldn’t like you if you weren’t. Still, you share a laugh with them, because what else are you going to do?
Julia, your wife, is on her back in a small bed, the kind built for checkups, not long-term stays. You are all too familiar with the various pieces of hospital equipment. You’ve pressed every lever, rifled through every drawer. Another frivolous attempt to lighten the mood when minds start to wander to that dark place.
The doctor cannot pick up a heartbeat. You watch her hands move the doppler up and down your wife’s abdomen, pressing into her pregnant belly, shaking her head. “This thing isn’t any good,” she says, “it’s pretty routine for this one to get a bad reading.” She gets the PA to order in an ultrasound and tells you both to sit tight. You are finally alone with your wife. You clutch her hand just as she begins sobbing. You are having a small panic attack that you suppress with a deep breath and a reminder to yourself that you somehow need to try to be the strong one this time, stronger than this wrought-iron woman who has already been through so much, who has shrugged off worry and surgery and so many medical procedures with a smile and with stoic grace that you couldn’t possess in a hundred lifetimes. It’s stupid and selfish, but you are hungry, and you’re afraid it’s putting an extra sharpness to your words. You repeat the mantra: Everything is going to be okay. We don’t know anything yet. The baby could be fine. But in these desolate moments between data collection and conclusion, your mind cannot help but prepare you for the worst. Your wife is still bleeding; and you can see it in the whites of her eyes that she knows her baby might be lost to nature.
As they wheel the ultrasound machine into the room, you look at your wife, now steeled in the presence of medical professionals. You get a closer look at her clenched jaw, her serene eyes, and you realize that she has made peace with whatever is to come. You are pretty sure she is the bravest person you have ever met. Suddenly you feel shy in her presence.
They rub her pale stomach down with a cold, gelatinous goo. It makes her flinch and giggle. God bless these goofy, awkward human moments, you think. They ease the tension and make All Of This seem a little more bearable. After a few seconds, the ultrasound tech zeroes in on your baby, lounging upside-down, legs crossed, very much alive. You glance at your wife with a smirk. She isn’t looking at the screen; she is looking at you, her eyes wet and red-lined. No one has said anything. You shake your head and gesture at the screen. Finally, after a maddening silence, the tech swallows, opens her mouth, and says, “Okay, we’ve got a heartbeat, and we’ve got movement, so that’s good.”
A few measurements and recordings later, you learn that the baby is on pace to be bigger; it is tracking two weeks early. The doctors, unsure about the bleeding, schedule a follow-up with your wife. The triage nurses give you a silent, knowing nod: we can all put away our gallows humor for the time being, disarm ourselves. There will be no bad news today, at least not between us.
You get in your car with your pregnant wife. For the first time in hours, you completely exhale. You ask yourself, what the hell just happened?
III. You are reminded daily that there are saints among us. They are like a deep breath, but rarer.
There are also the gentle few who are sincere when they tell your wife stories of similar issues when they went through a rough pregnancy. Each of these, of course, come pre-installed with a happy ending: the kid came out issue-free, or had their edges smoothed out while they were still babies. They’re long and tall now, the star of the football team or the model U.N. or something in between. On each of these occasions, you see your wife’s spine loosen a little. The tightness you both feel in your gut loosens up.
But she is still feeling strange, and passing blood clots the size of the palm of her hand. She is so used to it that it is no longer traumatizing, but it unnerves her each time. By now she knows not to call her doctor or go running to the hospital when it happens; no breakthrough awaits, no discovery just around the corner. Besides, she has an ultrasound next week, and you’ll see the baby moving around, hear its heartbeat, and you’ll relax about it all. But when you’re there and you’re glancing at that screen into the murky blobs and shapes surrounding your baby, you wonder what is going on in there, and why. It might as well be you on that screen, suspended in zero-gravity darkness, completely of and inside the unknown.
The saints return, checking in, always with a little bag with some baby accessory inside, a rattle, a bib, a book. They have grisly stories of bodily fluids and pain; of Braxton-Hicks contractions, of preeclampsia, of morning sickness lasting deep into the second and third trimesters. Giving birth is macabre, and those who have gone through particularly gruesome episodes delight in these stories. It is oddly cathartic to know that people in your life went through something horrifying like this and came out alright on the other side. It amazes you how lucky you are, in this time of deep, serrated selfishness and rancor blaring from our political leaders’ mouths, that the best human beings on the planet, the kindest and the most generous, are somehow all around you. You don’t deserve them.
Though its rhythm has changed, time continues to move forward; and life, though weirder and more tense, goes on. You move to the suburbs. You are successful at work, and return home from the state capitol for a summer of mowing grass, grilling meat, and working on getting your old house on the market. There are segments of these days during which you are genuinely happy, those focused moments immersed in a task. The darkness, however, is always there, always whispering to you, “Something’s wrong, and you know it. Your wife knows it.” You have tried expelling it, banishing it, but it always ends up seeping into the cracks of your skull. So by early fall, the darkness is your friend. You keep it in its partition, you minimize its impact. But it’s not going anywhere, not for quite a while.
IV. You compartmentalize your wife’s pregnancy into adjustment periods. First, it was the small ritual, the amateur hour, the most basic medical practice your ungainliness continues to make so difficult, a simple shot.
Julia has made several doctor-mandated adjustments. She can no longer exert herself, and mustn’t lift heavy objects — particularly, your two-year-old daughter. This makes getting in and out of cars difficult, and bath time impossible. This frustrates your wife, who is perpetually restless and easily bored. She is an educator and an incredibly hands-on mother, so this restraint she must now exercise at work and in her home galls her. She feels awful a lot of the time. She gets out less. She is more withdrawn.
You had begun making your own adjustments, too. Getting out of bed became more difficult. You got to work later, stayed there long past close of business. You spent a great deal of time out of your own head, either by immersing yourself in whatever you were doing, or by drinking, which you had been getting into quite early and often for some time. Clusters of empty bottles greeted you on the kitchen counter in the mornings. On a few occasions, you had to go somewhere — your office, your car, your friend’s place — to sober up before driving home. You are ashamed of this but also what were you supposed to do?
You have been passably dry for some time by today, though, and you’ve been feeling good. Each week ticks by, your wife is still pregnant, your baby still healthy from what they can see. Today you are working in Harrisburg, and after a long day, you wait for your car in the hotel lobby; you are headed to a fundraiser with your colleague. Your phone vibrates, and you see the shape of your wife’s name. You know she had a doctor’s appointment today, so you answer, expecting good news. You’d been, mercifully, getting a lot of it lately. “I’m so annoyed,” she says, “they’re making me go to the emergency room just in case I’m leaking amniotic fluid.”
You are in complete denial that there is anything wrong. This entire pregnancy has been packed with so many traumatic episodes and moments of doubt and very real sickness that you refuse to believe it will get any worse. You tell her to stay positive and to keep you posted. As you hang up, your colleague walks out of the elevator in front of you. “Can you find another way back to Pittsburgh tomorrow?” you ask.
About an hour later, you’re back on the phone with your wife, who is hyperventilating. They are making her stay in the hospital until she goes into labor. At 24 weeks, the baby in her womb has around a fifty-percent chance of surviving, you figure. You don’t say that out loud. The doctors told her that she could go into labor at any minute, or not for weeks, months even. Your sister-in-law, one of the saints, is there now too; you tell them that you’re filling up your tank in Carlisle now, that you’ll be there as soon as you can. You make it to West Penn Hospital 30 minutes faster than you would have if you had been driving safely. By now, your wife is in good spirits. Not long before you arrived, an ultrasound confirmed your baby’s well-being, and the technician was able to find a few remaining pockets of amniotic fluid drifting around, like discarded space junk. “That’s a good sign,” she assures the room. “If it were all gone…” she doesn’t have to finish.
You get home late. There are lights on in your house and it is at that moment you remember that you have a daughter, and that someone must have put her to bed. You find your mother-in-law holding vigil. You hug in the entryway, both agreeing that this all could have gone down much, much worse. She heads to the basement to sleep on an air mattress, you get your suit off and take a shower. Later, in bed, you try to close your eyes but you can’t stop watching your phone charge on your night stand, the screen black with inactivity. You don’t know what you’ll do if it lights up, what message it will bring.
V. You are an expert at pretending life is normal. Between your wife’s first night in the hospital and now, you have become a master of finishing work, picking up dinner, and getting everything up to the Towers at West Penn Hospital, where your bored and restless wife awaits. You tell her you would kill for her situation; by now, you’d have the PlayStation 4 in here and you’d be chiseling away at your to-read list, too. She thinks this is neither funny nor productive.
Your daughter is asleep in her bed. Your wife looked and felt better today, so you celebrate. You pour a glass of wine. The bottle is drained shortly thereafter, one of its cousins popped open for a night cap. You stumble through your house shrugging off your clothes, preparing to make an attempt at sleeping. Your friend Steph, another one of the saints, texts you and asks you if you know anyone on the ballot tomorrow, since it will be Election Day. You text back and forth before you, groggy and buzzed, put your phone down and close your eyes. Within a few breaths the room is illuminated by your phone’s screen, the rhythmic buzz of its silent ringer reverberating off of your night stand. It makes you jump. You shake the blur from your eyes and your heart sinks. It’s your wife. It’s just before midnight. It’s not good news.
She’s having contractions, or she thinks she is anyways; the doctors haven’t confirmed and they can’t get an accurate reading. She says she will call you back when she knows for sure. You spend an hour getting dressed and trying to decide whether to go over to the hospital or not. You call your parents but in your panic, you only call their cell phones, which are on do-not-disturb. Steph is still texting away; she is an insomniac, and has a lot of things to say about the elections. You fill her in on what’s going on. She tells you she’s on standby to come watch your daughter, and within five minutes of you getting the call from your wife telling you to get there, Steph is at your door. She’s screaming at you to leave, that she doesn’t need you to show her how to work the TV, you jackass. You shamble out of your house and into raw, wild darkness.
You try not to think about how little a 27-week-old baby is going to be; about what kinds of complications are included with such a tiny human born so prematurely; what parts may be missing, what went wrong. You shake those thoughts away, but you are hurtling into the vast unknown, your mind holding onto anything that will slow it down. You try to shift your focus onto getting to the hospital as quickly as possible. A nurse greets you at the emergency room entrance. There is wine on your breath and you are exhausted but jacked on adrenaline, and it is at this moment you realize how ridiculous you must look. You make it to your wife’s room just in time to hear the calmest doctor you will ever meet cavalierly suggest that they get to the Operating Room immediately, that they need to call down and explain that a patient needs an emergency C-section as soon as possible. Your baby, because why not, is in the breach position. “So that’s us?” you ask.
The entire room turns to you and each face gives you a look of annoyed pity, you poor, terrified moron. “Yes,” he says, so calmly, monastically.
More nurses bolt in the room, along with your wife’s awesome, miracle-working OB-GYN. They collectively wheel her off. You follow along, jogging to keep pace with the procession.
The “shit is going down and we need to act swiftly and decisively” elevator is big enough to fit a few hospital beds and an entire offensive line, and it’s made of plain, heavy steel. It is a utilitarian object devoid of any flair. It careens down the shaft and its doors open to artificial light and quiet tension. Your wife is brusquely carted off, and you’re left in a triage room littered with old, outdated medical equipment. No one hands you any scrubs or a mask; instead, they point to a bed and some chairs partitioned by a curtain. “You can charge your phone over there,” a surgery tech says.
The tech vanishes, and a new person comes from the hallway. She looks overworked and intense. “I’m not allowed in there, huh?” you ask.
“Afraid not, dad,” she says. “They had to put her all the way down and get moving right away. She got fully dilated fast. There might be an infection. Or…something.” She tells you to hang tight.
For the next two hours, new faces appear from beyond the double doors, each looking grim. “She’s doing great,” they all say. “It’s just tough.” You don’t know how to interpret that.
You wonder how a baby that tiny could be wreaking so much havoc. And so you continue to wait, in the cathedral-like quiet of the abandoned triage room. You watch dust particles suspended in fluorescent light. You watch your phone charge. You crack jokes with the nurses. You feel like you are in purgatory; that this must be what it’s like in an intermediate spiritual state, waiting for a Final Decision, facing all your previous mistakes and your own anxious trepidation of what lies ahead. You are delighted when your family shows up in staggered groups of two. You go out and give them periodic updates, but you’re happy just to get some relief from the solitude. Your mother-in-law gives you peanut butter crackers, which you devour.
Finally, the doors burst open and a team of doctors and nurses are hurriedly walking down the long hall past you on the opposite side of the room. The nurse you talked to the most motions you forward. Your mouth opens to speak, and she tells you that your wife is fine, and gestures toward the incubator. There are tears in your eyes as you see the pint-sized thing in the seemingly-giant compartment being wheeled away. The nurse fastens a blue wristband on you. You have a son. “Are you shitting me?” you ask. You are delirious.
“I am not shitting you,” she says with a grin. “Go up and check him out.” He is wearing a knit cap and he looks like a turtle without a shell, like a bird with no feathers. She tells you he is two pounds and some change, heavier and longer than expected but obviously still in immediate need of the services rendered at the NICU. Despite this, his face is jarring, and it stops you dead in your tracks, lifts you by the nape of your neck. It is the face of your grandfather. It is the face of your father. It is the face of your son.
VI. Michael is your father’s name, but now it’s also your son’s, and the latter is being whisked to the NICU. You would have followed the racing mob, but you are being firmly held in place by a hand on your shoulder. Its owner is a sturdy, serious man with gentle eyes that have seen great joy and deep, hopeless pain.
“Your son was born without a heartbeat,” he says. You are unsure how to react to this update. You think back to moments ago, when you saw your son. The nurse smiling. He was breathing! Was he breathing?
In an accent you can’t place, the doctor continues, “we don’t know how long he went with no pulse, but we did over a minute of chest compressions before we got him back.” You feel queasy but you hold on, trying to meet the doctor’s gaze, trying — and most certainly failing — to look serene.
“He gave us quite a scare,” he adds.
“Great!” you hear yourself say, feeling silly. You do not know what else to add. You thank the man for saving your son’s life. You picture those strong hands on your son’s impossibly tiny torso, pressing down, trying to jumpstart a heart the size of this guy’s thumbnail. You thank God you live in these modern times, in a city known for its hospitals.
“He is moving around quite well; and cerebrally, looks to be functioning better than he should be, frankly,” he says. “He didn’t have blood flowing to his organs for some time, so there may be issues. We will evaluate that over time and monitor him for any damage — but he looks good, all things considered.” He tells you they’ll have answers soon, and then he’s off to join the team rushing your son to the NICU.
You’ll see that doctor around often and you will always trade smiles. You will try to let him know how much you truly appreciate what he did. His name is Sanjay Mitra, a name you will never forget: He’s the guy who brought your son back from the dead.
VII. Weeks ago you were told by a grizzled veteran NICU nurse that it was going to be a rollercoaster, that you might not feel like anything is under control for quite a long while.
Since then your son has made some progress, growing in his incubator from a sickly amphibian to most definitely a baby, still smaller than a newborn. His lungs are bad; he bounces between a full ventilator and a CPAP machine, but they’re getting stronger. He looks giant to you compared to what he was.
And, a lot of times, you laugh at him. He’s smiling every now and then, especially when the ventilator’s out — he hates it, pulls at it, even successfully ripped it out of his lungs a couple times — and the more you are able to hold him, feel his mass against your own body, you start to think to yourself this isn’t so bad and hey, we’re getting through this okay! Your daughter loves the play rooms, she talks to the nurses, is deeply in love with her brother. The day you bring her in to see him for the first time, he’s still in a sealed incubator; she hangs on the plexiglass like a fan in the front row of a hockey game, smacking it, beckoning the player to drop the gloves, to fight.
Earlier today you noticed a pretty decent-sized hernia in his groin while you were changing his diaper. He wears one that could fit on a child’s doll, and his teeny poops are too hilarious to be gross — you eagerly change him when you visit. The nurse made a note of the hernia and later, after you leave, a decision came on high to move your baby from West Penn to Children’s Hospital, so they could surgically fix it. This freaks you out; your son looked great today, and the notion of him having to undergo an operation is something you just can’t process. Your wife is devastated. Hours go by, and after she gets through to Children’s, you learn that the doctors are still mulling over surgery, that they will be in touch. You tell Julia to try and get some sleep. You take turns napping on the couch, waiting for a call. Neither of you get any adequate rest. You haven’t really for quite a while.
In the morning, you are exhausted, groggy, and stressed. Your wife calls, trying to figure out what’s going on. They still haven’t operated, and she’s agitated. She heads into the hospital to get to the bottom of whatever is going on. Later, she calls you. One day, a phone call from your wife or from an unknown number won’t trigger your anxiety, but that day is still a long way’s off. You answer, and her voice is shaky. “I have some bad news, Mar.”
Your wife tells you that Michael has something abbreviated as N.E.C. She can’t remember what it stands for, except the first part: necrotic. You look it up on Google and immediately regret it; it is a horrific infection which leads to — more or less — a rotting bowel system. You make a mental note to never look it up again, but you’ll remember those three letters until you’re dead, probably.
It’s nobody’s fault, but they had been giving Michael a steroid to strengthen his lungs, and the steroid hypothetically dropped his immune system enough to allow safe passage for the infection into his body. It’s rare: if they hadn’t been scanning that region to prep for hernia surgery, they wouldn’t have even noticed the infection. You can’t help but laugh thinking that your son’s balls might have saved his life.
Your family, so used to making emergency trips to your house, relieves you from your parental duties so you can get to the hospital. Your daughter loves all four of her grandparents with a territorial fierceness that can make saying goodbye painful and brutal; so when one of them walks through the door, it is like she is overdosing on joy. This takes a little of the sting out of the fact that you’re spending less and less time with her outside of hospital trips.
At the hospital a justifiably cocky and good-looking surgeon is standing at the foot of your son’s incubator. Your wife is behind a curtain, using a breast pump. The purring whoosh sound of the machine is a constant in your life, another routine, a rhythm played every three hours. It can’t be comfortable for your wife, but she does it regardless. With everything going on, she hasn’t even been able to nurse her own newborn son once in the month or so he’s been alive. She aches for him, and this gives her some relief, and in the end, your son gets the precious milk from his mother anyways.
The surgeon tells you that he was able to somehow push the hernia back into your son’s abdomen from his scrotum. You wince at that thought. A preliminary x-ray showed that the intestine was crimped, and now is clear. He says that this could help with the antibiotics, and that they’ll blast your son with them to rid him of the N.E.C. before they consider surgically removing the parts of his intestines that may waste away during the course of the infection. He smiles; “none of this you have to worry about now, though,” he says, “he’s all clear for now, so the infection could go away without doing any damage. We’ll know in a few days.” More doctors, more nurses, and more conversations later, and you’re back out the door with your wife wondering when exactly your lives are going to go back to normal. Still not for a long while, seems like.
Your phone rings; it’s your sister Vicki. “I can’t focus on anything and I am freaking out about you guys,” she says. “Are you at Children’s?”
Ten minutes later the big automatic doors to the NICU open and you greet your sister. She immediately bursts into tears. You try to hold it together so there aren’t two soggy Greek criers in the hallway, but it’s almost impossible, so you lead her to Michael’s room while trying to explain that it all might still be okay. After a while, your wife mentions that she’s hungry. “Let’s go get her something,” Vicki says. You both head out, leaving Julia with Michael.
It’s snowing outside, and the wind is beating against your faces as you walk down Penn Avenue. Your sister laughs. “This is ridiculous,” she says. You both can’t help but laugh at the silliness of it. “I need a drink,” she says, half kidding.
“That is actually a great idea,” you say. You stop at a pizza shop and order a large cheese, and on your way out you ask the guy at the counter if there’s a place nearby you can grab a drink while you wait. He points past the 40th Street Bridge. “It’s my girlfriend’s parent’s bar,” he says in a thick Pittsburgh accent. “It’s real nice.”
The bar is not nice; it’s a dive, and you love it. Vicki looks horrified but she’s still laughing at the ridiculousness of it all, of life. You both order a shot and a drink; a beer for you, a mixed drink for her. You guzzle them down, trying to talk about anything but Michael. After about 30 minutes, you stumble back out into Lawrenceville in the winter. You and your sister are drunk while it’s still light out, clutching a pizza and plodding through snow, trying to get back to the hospital as quickly as possible, laughing uncontrollably. For a moment, you’re both free of it all, delirious in the blitheness of life without the stress of All Of This. You are so damn thankful for your sister in this moment. When you get back, the three of you sit in the cafeteria and methodically stress-eat the entire pizza.
Three long days pass. Your son is back on the ventilator. He can’t eat while they monitor the infection, so he’s on an IV drip of ‘baby Gatorade’ consisting of lipids, amino acids, and all the good stuff you need to stay alive. The vent and the hunger make him irritable and feisty when you see him. A doctor arrives with a chart in his hand and you freeze and pray and tense up and expect the worst, because of course he’s going to need to be fiddled with some more, some strange exotic disease has gripped him and you are all due for more drama. Why not?
The doctor smiles. “Somehow, the N.E.C. is all gone,” you hear him say. “The antibiotics worked beautifully.” You are shown a black-and-white photo of an intestine with a split-log pattern of dark-looking lesions, and another that is crystal clear; the before-and-after.
“We won’t be perfectly happy until he has a successful bowel movement, but we’re quite pleased with these results. After he moves his bowels we can proceed to feed him milk again.” And just like that, he’s back out the door, into the next room, solving someone else’s problems. You are awestruck at the talents of these amazing people who keep bringing your son back from the brink. But mainly you’re surprised — and oddly proud — of the toughness of Michael, the tiniest badass you’ve ever met.
VII. You already are well-versed on preemie lingo. You’re familiar with bradycardia, a small cardiac episode that slows an infant’s heart rate down, sometimes dramatically so. Your daughter Stella, born at 32 weeks, had quite a few of them as she grew and developed during her own three-week spell in the NICU two years ago. You know they can be bad, that they turn babies a shade of pale that is difficult to watch, that their lips and eyelids can turn unnatural colors, that sometimes they need to be revived with a manual air bag pump. This is a thing that happens to most babies born prematurely, and mostly has to do with their little air passages being more susceptible to apnea; and since their hearts are equally miniature, they have a hard time keeping up with those changes. All sorts of things can cause them but they usually work themselves out as the kid continues to grow.
Your son has a lot of bradies, as they call them in the biz. Every day he has a dozen or so. You chalk it up to apnea and his size, and you generally are not too worried about it, but it is extremely stressful when one of the several sensors attached to your kid goes off in thunderous alarm, and a pack of nurses and physicians’ assistants barrel into your room, ready to do whatever it takes to get your kid’s heart beating right again.
Weeks go by. He jumps from ventilator to CPAP, then to a nasal cannula, and from there a respiratory therapist works to lower his oxygen intake until he’s breathing what they call “room air,” or 21% oxygen. Sometimes he takes steps back, sometimes a brady bumps him down to a higher o2 concentration or to CPAP. You’re numb to those minor hiccups by now; you are too prepared for something to go horribly wrong to be fazed by a couple of prongs sticking out of your kid’s nose.
They end up having to ventilate him once more at Children’s, as they put him down for that hernia surgery they had planned back when he was first transferred. You and your wife leave the hospital, go get Thai food down the street, and wait. The surgeons told you the procedure would take about an hour and a half; they were going to repair the hernia area and also give his belly-button a little extra strength, as preemie babies tend to get small hernias in their belly buttons, too. Your daughter’s stuck out so far you thought she might be able to spin on it, but it eventually corrected itself.
You pay your bill. Your wife sighs. You head back into the hospital to see how the surgery went about a half-hour early. You are surprised to see a team of surgeons and doctors smiling and taking notes around your son, who is shirtless and spread out in his isolate, looking like a resting Spartan hoplite. “We knocked him out, then proceeded to go in to repair the hernia,” the lead surgeon said, “but when we got in there, we noticed that he no longer had a hernia; it had totally repaired itself. So we stitched up his belly button, and here we are.”
You burst into laughter. This kid is unbelievable. You thank the doctors, and get a little extra briefing from the nurse, who is going to keep him on some pain meds for a while so he can heal in peace. Every time he winces, the nurse looks like she might cry. This happens regularly, as every medical professional assigned to Michael ends up falling in love with him in minutes. He is high maintenance as hell, but he’s sweet, he makes adorable noises, and does funny things with his arms and legs. More often than not, when you show up to the NICU, you find him in the arms of someone in a rocking chair next to his empty incubator, with a smug look on his face.
Michael takes his sweet time getting off the ventilator, then he goes back to CPAP, and eventually back to nothing. Free of any breathing apparatus and without any hernias, Michael has graduated from the Children’s NICU to the Children’s Home, a nearby step-down facility (among other things) where he once again gets his own room and the attention of a nurse 24 hours a day.
IX. The days blend together at The Children’s Home; and while your kid is doing fine and growing, you are getting impatient and tired of the routine. Your wife, frustrated by a lack of progress, marches on, interacting with doctors and nurses and taking the day shift while you take nights. Your family fills in the gaps in between and you realize how lucky you are to have pretty much your entire extended family within an hour’s drive of you. They all ensure that Michael doesn’t spend a ton of time alone. Steph is a permanent fixture in Michael’s room; she can be found there on any given evening, a book sprawled across her knees, Michael passed out and snoring on her, while she studies for her next round of actuarial exams.
And your daughter Stella continues to be a supply of boundless, cloying joy. She loves being a big sister, which helps, but the effect she has on this insane situation goes far beyond how she feels about Michael. Born at 32 weeks, she was a preemie herself, and a living example of how it all tends to work out. She learned how to talk quickly and — you would argue — too efficiently, so she is a constant source of laughter for everyone, from the nurses to the kids and parents visiting the playrooms of both the hospital and The Children’s Home. She’s clever enough to talk anyone into giving her whatever she wants, and though she can be shy, she makes friends fast. Her toys and decorations litter your son’s room, her creations adorn his walls.
You rely on Stella for so much: a routine, a reprieve from constant medical drama, a chuckle. You really have no idea how you would get through this without her and you feel ridiculous for that; she is two years old and you are 32 and yet somehow, it’s you who needs her and not the other way around. She’s like ice cream: no matter the circumstance, she makes everybody happier. It has always been this way and it probably always will.
Back at The Children’s Home, the task at hand is to fatten your son up. Michael no longer needs any oxygen support, but he is having a difficult time nursing, so he gets most of his nutrition through a feeding tube inserted into his nose and fished down into his stomach. He obviously hates it and pulls it out routinely, but he needs it. He never quite figured out how to latch; during the weeks when instinct and reflex were supposed to kick in, he had a ventilator sticking out of his mouth. You try not to get annoyed by the fact that he isn’t very good at eating. You’re just happy he’s alive.
But one day your son has a brady so bad they decide to do a chest x-ray and a swallow study in order to figure out what’s wrong. You’re in Harrisburg, so your wife rides with your son back to Children’s Hospital in an ambulance. She describes the sight of that baby in a plastic incubator getting wheeled into a hulking, giant ambulance and her voice cracks. There are tears in your eyes as you walk the halls of the state capitol and you spend the rest of the afternoon pretending to care about anything other than the results of that swallow study.
In a few hours, your wife learns that Michael is aspirating the milk they had begun feeding him; it’s filling his lungs and disrupting his breathing, causing his heart rate to drop. The nurses and specialists calmly tell your wife that your son is at risk for more cardiac trouble and pneumonia if he drinks liquids, now or in the near future. He must now drink a bottle of formula, thickened with oats to a certain consistency, so he can’t inhale it. Breast milk won’t work, since there is an enzyme in it that breaks down grains, thinning the consistency of the feed in minutes. This horrifies your wife, who has fervently and patiently longed to nurse your son. This is the second baby she has had untimely ripped from her, and while your daughter Stella caught up quickly to nursing, that was never going to be a reality for Michael; and that truth, along with the prolonged separation from him, is becoming too much for her to bear.
Julia is, understandably, a wreck by the time everyone is back at the Children’s Home and settling in. A nurse calms her down and encourages her to continue pumping. “You never know when he might be ready to try again,” she says with a smile. Later, you meet her and your jaw drops. It is your old friend Nicole, a woman you’ve known for over twenty years but hadn’t seen for a dozen or so, except on Facebook. You know she has a family of her own now, so you two get caught up. Nicole will become Michael’s favorite nurse; he is never quite able to take his eyes off of her when she’s around.
These moments of light pierce through the darkness at such desperately-needed times. They have sustained you for so long that you’re starting to really believe that there are other forces at work here, invisible hands hovering just inches from you, one ready to nudge you off the edge if you should slip, and one to catch you. Maybe that’s why you feel like you’re running in place.
X. You have always said that the simple act of trying to get pregnant and have kids is a reckless hope. You still believe that.
One day you wake up late to your wife and daughter making breakfast in the kitchen. It’s a normal day; your new normal. Your wife’s phone rings. As the conversation unfolds, you can hear from the tone of her voice that the news isn’t good. Each response from your wife sounds more concerned, more deflated. When she hangs up the phone, there are tears in her eyes. “Michael had so many bradies last night that they had to take him back to the ER at Children’s this morning,” she says. “They said one was so bad they had to bag him for minutes. They don’t know what’s going on.”
When you get to Children’s, they’re putting the ventilator back in and your son is so pissed about it. He looks like a boxer after a few rounds: tired and a little beaten up, but okay. The analogy works, because every day is a fight, and this kid just takes and takes it. He amazes you. You learn that he tested positive for rhinovirus; he has a bad cold, which threw his immature, still-healing respiratory system dramatically out of whack. He will be fine and will recover and be back on his trajectory soon. He has to stay at Children’s for the time being, where he will see all his old friends and the nurses who loved him the last time he was here. They all can’t believe how huge he has gotten. You don’t know why, but it feels oddly good to be back.
It has been a slog. Every holiday that passes by without your son home takes a small piece of your wife with it. It’s hard to focus on work. It’s hard to focus on anything, really. You resent the amount of time and fuel — both literal and metaphorical — it takes to drive over there and back every day, especially because Michael has been looking so great. He has gained weight, he is back to room air, and he’s doing okay with his thickened feeds, though he hates them, and so do you. You know it isn’t true, but he feels ready to come home.
The doctors and nurses at Children’s all tell you that Michael needs a gastro tube. They stress that it is just a small port inserted into his stomach which can then be used to pump milk or medicine or whatever else directly into his stomach. You are strongly opposed to this, not particularly because of the tube itself nor the daunting task of maintaining the equipment you’ll have to bring home; you just wonder how much more one little baby can take. They’re going to have to put him back on a ventilator to do this, his fragile lungs and airway will be scraped and invaded by steel and plastic once more, and then he’ll be cut open again, and then who knows how long he’ll take to get back to room air?
But there’s nothing much you can do about it, and you and your wife have no more fight in you. You both desperately want him home, and in every other category but feeding, he’s ready. So after a week or so of fighting for the sake of fighting about it, you relent.
The procedure went about as well as you thought it would and your son is back on oxygen and having a hard time being weaned off of it. You are not surprised, but a silent, teeth-gritting frustration sets in during his final few days at Children’s Hospital. When Michael is adequately healed, he is sent back to Children’s Home one last time, so you and your wife and anyone else interested can get used to the cumbersome, overwhelming feeding tube apparatus. When the EMTs arrive to transport your son, he’d been in the ambulance so often bouncing between locations that he smiles at them, greeting them like old friends.
You pack all of his stuff and make your way back to the Children’s Home, the guards at the front desk looking at you funny until they realize that’s why they remember you; you were just here. Charles, one of the guards, furrows his brow. “Everything okay?” he asks.
“Oh yeah,” you say. “His days are probably numbered here. He just got a g-tube put in.”
“Damn!” he says, “kid has a penchant for drama.”
“You’re telling me,” you say.
“Hey when you come back down, remind me to show you my new suit,” he says. Charles is a treasure hunter when it comes to deals on menswear, and when you arrive at the Children’s Home straight from work on days when you’re wearing a suit, he is your unofficial fashion consultant. Your son is almost seven months old and has never been anywhere but here or the NICU, and the people you encounter every day and interact with have become close to you. It feels like they have always been there. With an end in sight, you feel a strange nostalgia. You know you won’t miss this place when you no longer have to come back. But the Indian Restaurant down the street with the great samosas, the Greek café across the road, the back way you found to get to your house quicker, the ride down Liberty from your office, these processes have been a huge part of your life for so long. To end them feels like moving to another town.
Upstairs, a nurse shows you how to work the g-tube pump. It is large, it has a conduit of wires and tubes attached to it, and it is giving you anxiety. You try to focus and listen to her directions, but you’re looking at your son, at the bandage on his abdomen and you’re wondering what have I done to this boy? while the nurse explains what to do if he happens to rip the tube out or it pops out accidentally (cover the opening with gauze and drive him to the E.R.).
Soon, you are adept at the g-tube and your wife, per usual, could write a book on the thing. She dives into every one of your son’s issues heroically and with laser-beam focus. She is the strongest woman you have ever met and you are still in awe of her. Your parents have an okay grasp on the pump, and soon most of the boxes are checked and you’re all ready for discharge, waiting for an okay from a doctor, or a P.A., or anybody.
But, because why not, Michael’s previously-perfect oxygen levels are dropping, and they can’t figure out why.
XI. These days your heart is a speeding bullet train, racing toward an edge that is just out of sight. There are moments you feel like you are so, so close to home, so close to things being back to normal; and others that feel like you are hurtling into the vast unknown. Words from doctors and nurses sound like they’re coming from the other end of a tunnel, like the speaker is underwater. You have an odd feeling that you might have to kidnap your own son from the hospital. And it’s nobody’s fault, not even his. You feel powerless, out of control.
It took you a while. You gave it your very best shot, but you are finally on the edge. It has taken you seven months, but here you are. The house always wins. Your body lurches forward, your feet holding on as you try to tilt yourself back onto solid ground, but you feel yourself drifting into space, suspended in darkness. You are losing yourself.
Someone reaches out and catches you by the nape of your neck. You are back from the edge. You spin around, and are brought to your knees by joy, by light, by him.
It is the face of your grandfather. It is the face of your father. It is the face of your son.
He’s coming home today.