By Laura Haugen
I am running down the dark hallway, my bare feet hitting the floorboards in thunderous claps. The alarm blares, every blast piercing my eardrums and growing louder as I near. My vision flickers and blurs at the edges. As I reach for her door I think: Check for blue, and then: Was it 20 compressions, two breaths? I shove the door open to the deafening shrieks of the machine, but I can see her, eyes wide and searching, her tiny feet kicking where the leads have tangled. I am here, sweet girl, I murmur as I scoop her up, gather the jumble of wires and punch at the buttons to turn the thing off. My arms start to shake as I pull a blanket around us and maneuver into the chair by her crib. Dave is here now in the doorway, rubbing his eyes, breathing hard. False alarm, I say, we can all go back to sleep. A few minutes later I hear him in the kitchen, the coffee maker sputtering. It’s 4:00.
It is the quiet that kills. We’ve learned to brace ourselves when the world grows silent, just as mountaineers recognize that same eerie stillness before an avalanche hits. We’ve learned this from our own trek into rarefied air, up in the third-floor neo-natal intensive care unit above the maternity ward where we begin our life as parents.
Two weeks in the NICU and we’ve developed a routine of sleeping and feeding in four-hour intervals around the clock. We can now distinguish between the constant whirring of the machines and the frequent alarms. We know how to bundle the cords loosely around one arm as we lift her up and out of her isolette, how to navigate the small spaces between the wires to hold her. Some mornings we detach the machines to bathe her and dress her in new clothes small enough for a doll. Over the hum of the equipment and activity we coo and sing and rock her. We learn she loves having her curls brushed; she and I learn to nurse.
We learn this too: to check the spots where tubing or tape has chafed, to look away when they have to push the gauge back through her nose and down her esophagus, to stifle our screams when more needles pierce her bruised hands and feet. We learn which nurses will look us in the eye and give us the answers we need. We learn to avoid small talk with other hovering parents – we are all too tired – and we learn not to ask too many questions about the other teeny newborns around us.
Each day we learn, and yet nothing prepares us for the anguish we witness when the blaring alarms from a far corner suddenly go silent, when a darkened isolette is wheeled out, and the weary family trails behind clutching one another, a caravan of grief moving across the ward’s threshold. We beg and bargain with the humming and flashing machines that record each astonishing breath and heartbeat of our child, to assure us we are safe for the time being. These devices mark our time, and we count each day until our release but pray it will not come too soon.
Over two weeks, she gains enough ounces to maintain a weight above five pounds and we are at last free to go home. Autumn leaves swirl and tumble soundlessly around us on the drive. We tiptoe into the apartment with our sleeping baby and our ears strain to adjust to the new normal — no more alarms, no more rounds of chattering nurses taking vitals or jabbing needles, no more tubes or wires or equipment whooshing and whirring. Just us and a resounding silence.
All is normal except that she won’t sleep for more than twenty minutes.
She didn’t seem to be getting enough milk when I nursed her, she’d just suck and suck and then stop and cry until she turned scarlet. So I’ve started pumping, feeding her the bottles when she loses energy to nurse but still seems hungry. Our pediatrician thought she might have acid reflux too, so we’ve had her on three different medicines. The first made her scream so we stopped it. Now the other two seem to work – one is in pellet form that I scoop into a syringe and shoot out into the back of her throat first thing in the morning, and then we have to wait an hour to feed her and then give the final medicine mixed with extra milk thirty minutes post-feeding.
It’s just the sleeping part now that we can’t get right.
We’re back at the NICU for what they say is a routine test for preemies. After a cold December night in a cramped room with my baby hooked up with wires from head to toe, I am feeling loopy and eager to leave the hospital again. I try to get the pinched-face nurse to crack a smile as she works to remove the wires, as she’s coiling each one around her efficient hand and dabbing solution on my daughter’s skin to pull the leads free.
“That makes stringing Christmas lights on the tree look a whole lot easier,” I say, chuckling to myself. But she doesn’t laugh as she briskly motions to me to hold my baby, and in the next instant a team of doctors files into the room. A deep-voiced, amiable doctor who looks to me of Sudanese descent introduces himself with a warm handshake and then begins showing me printouts of the night’s results. On the top page I see the jagged lines of a chart.
They take turns pointing and speaking but it takes a while before I can register the words: 359 times she stopped breathing… obstructive and central apnea… more tests needed…. sleep monitor… when the breathing stops… the heart at risk… the length of the pauses… reason to be concerned…Do you understand?
“She stopped breathing… three hundred times?” I blurt out. I lean into the fidgeting bundle I’m clutching in my lap, feeling faint, as they all stare at me, waiting for me to continue, but I don’t know what to say. I watch my baby’s hand reach up and grasp a fistful of my hair, tug it and then bat it back and forth in the air.
They talk about how some babies’ central nervous systems still haven’t developed enough to regulate breathing, that they can essentially forget to breathe, leading to extended pauses. That they can outgrow the condition any day but there’s no knowing when one of these pauses can turn deadly.
“Did she ever turn blue?” the night nurse is asking.
I shake my head. My fingers feel along the soft fabric front of my baby’s onesie to snap it closed and I hold her, rocking, inhaling the dewy scent of her curls, her lavender shampoo, and rubbing alcohol.
“Do you understand?” the night nurse repeats.
They show me now how the monitor works, where to stick the leads on her chest, how to activate it and what to do when the alarm sounds after a 20-second pause in her breathing. They tell me to use it anytime she might fall asleep, even in her car seat and stroller, day and night. They caution me to check often if she’s turned blue, to feel for breathing and a heartbeat, to administer CPR.
The Sudanese doctor is pointing to a spot between the printed giraffes on my daughter’s chest, over the wishbone of her tiny sternum where I’m told to compress to try to resuscitate her.
“I’m scared,” I say, louder and more desperate than I intend it to come out.
“You should be,” the night nurse says, giving me a grave look. The look of a schoolmaster impatient with a foolish student. As if the problem all along has been that I haven’t taken all this seriously enough.
I find our winter coats and pack up our things. I don’t hear anything else they’re telling me as they box up the machine and the wires and send us away. When we get buckled inside a taxi I grip her mittened hand and can hardly find the words to say to the driver, Take us home.
I used to hold my breath for two lengths of the pool. A long-distance swimmer for years on the local swim team, I’d put my pulmonary strength through rigorous tests, half expecting that I could, after all, breathe underwater. My favorite event, the 500-yard freestyle, gave me ample time to count my strokes before each breath, to see how far and fast I could go with a single intake of air. Sometimes during practice I’d dive down to the bottom of the deep end and linger at the bottom until I felt my lungs couldn’t hold an instant longer.
When I later joined my high school cross-country team, I found myself holding my breath just as I had done in the pool. I’d be keeping pace, counting strides, my eyes focused on a distant point ahead, completely forgetting to inhale. My coach was the first to notice this after watching me run hills and nearly collapse from dizziness, and sometimes as I’d round a bend during a meet, he’d be standing there shouting, Breathe!
I feel like I’ve been forgetting to breathe in the half year since she was born, and sometimes when I look at her I’m overcome with lightheadedness.
At the six-month checkup, I watch the pediatrician smile at my daughter as she tests reflexes and takes measurements. I feel a mix of pride and disbelief when she declares that everything is on target, that even my daughter’s height and weight are no longer in the lower percentiles. The doctor then shifts her attention to me, inquiring about how I’m adjusting.
“Are you getting any sleep?”
I laugh, then catch her eyeing me, and at once I am conscious of my messy ponytail and the milk-splattered sweater I pulled over rumpled jeans.
“Are you taking care of yourself?”
In her stiletto boots and smart blazer, she is the most stylish pediatrician I know, and I take her gentle questioning as both genuine and kind. She tells me I don’t need to keep pumping during the day or nursing at night, that I need to take time for myself. Relax more, go out, have some fun, she suggests.
“I just need…” I say, but the rest of my sentence sticks in my throat. To keep her safe, I want to say. Everything else can wait.
“Let me ask you,” she says, her long, ring-spangled fingers dangling above my girl, who is babbling in delight. “Has this monitor helped?”
The question knocks the wind out of me, and I struggle to keep from driving off the road the whole way home. It infuriates me because I know she is getting the reports from the sleep clinic, jagged charts and all. I know she has seen that my daughter stops breathing for as long as fifteen seconds at a time, more than three hundred times a night. That she knows any one of those pauses could be deadly.
But I also know she is right to ask, because I don’t have the answer.
“I can’t advise you to go off the machine,” one doctor tells me, “but I can’t tell you that it will prevent her death either.”
After weeks of reading up on the sleep apnea studies and consulting more doctors, I can’t find any definitive evidence that hooking up my child to the sleep monitor helps us avert the nightmare scenario that plays out in my head every single day. Because she shows signs of both obstructive and central apnea – as well as apnea of prematurity – there is no guarantee that the alarm would sound in time to save her. How is it even possible that the small comfort we felt from the machine when it wasn’t blaring was just false assurance?
As she becomes more mobile by the day — able to roll, crawl and grip things in her crib — I now fear that she will get entangled in the wires and strangle herself. I also have a growing fear that our sleep deprivation will kill us all.
I am the one who keeps vigil, sprinting to her room several times each night. I’m running anytime the alarm blares due to tangled wires or a detached lead, I’m running anytime her cries turn to shrieks, I’m running even when – especially when – it’s suddenly too quiet to hear any movement. In an extended state of panic and sleeplessness, I’m running from night into day into night again. I don’t recall ever talking about who would take on this job, but somehow, it has fallen to me: I am the runner of the house.
My husband is inexplicably able to sleep through most nights and function at work. I listen to him snoring softly beside me now and will myself to fall under the same spell of sleep. It doesn’t come. I watch the grainy image of our girl on the baby monitor screen recording her every movement remotely from the camera we set up in her room. Two mechanical monitors and one human one are all focused on her. As I watch her in the flickering green glow, she looks like she’s underwater, as I feel too.
I have this strange recurring dream of sinking and somersaulting in a dark pool with her, not knowing up from down and feeling my lungs start to constrict from the pressure. I search frantically for Dave and scream out for help but know he’s far away and can’t hear me. I swim toward a window in a corner and pound my fist on it but no one is there. I’m feeling lost and scared that we’ll never find the way back, when a shadowy figure appears behind the glass. YOU SHOULD BE, the words echo through the water and reverberate in me as I wake up thrashing and gasping for air.
It takes me a moment to shake off the nightmare as I squint at the blurred screen until I see her stirring, until I know she’s okay.
I can’t remember what was different today, what compelled me to load up the stroller and venture out into the midday sunshine and fresh air. I don’t know how I maneuvered down the cobblestone sidewalks and through the bustling crowds at central station and up the alleyway lined with chic boutiques. I’m not sure what it was about the neon signs of the ice cream shop that beckoned me inside, except that it just felt like time for us to try something new on this early spring day after seven months of near-total hibernation.
I don’t recall exactly what Euro pop song was playing or what was going through my mind as I gazed at the colorful menu above the counter, or what noises I made to comfort my girl wiggling and jabbering below. And I can’t explain why at some point, as I stood in line trying to decide on an ice cream flavor, I felt everyone staring at me, or how, when I noticed that the wires were sticking out from her stroller and the lights on the machine were flashing, I couldn’t stop thinking about a bomb, or rather, I couldn’t help but think that they were thinking it was a bomb, some ticking thing getting ready to blow the place up in an instant, or how I glanced nervously over at the mirror on the wall and couldn’t recognize the dark-ringed eyes reflecting back at me or why it was so hard to breathe or how it’s not as easy as they say it is to cup your hands around your mouth to hold air when you’re shaking and the world starts spinning so fast you can’t see straight and there’s no way to turn this heavy clunker of a stroller around, the ticking time bomb that they all think is going to explode.
I don’t remember how long I stood there hyperventilating, nor do I know how I made it to the exit and pushed the stroller up the steep hill back home. I can’t say how long I’ve been sitting here on the couch, still trembling, unable to stop crying, trying to not feel like a terrorist or a lunatic. I don’t know what to tell Dave as he walks through the door now and flicks on the lights and calls for me or how to explain what happened today and I don’t know why when I open my mouth I’m screaming that I won’t be the one to hook her up to the machine tonight and I can’t take one more shrieking alarm and if I could only get a goddamn night of sleep and please, please don’t let her stop breathing and don’t let me run to her crib to find her dead.
I don’t know why I don’t look at him until it all comes pouring out of my mouth, that I can’t do this anymore, that I can’t do a fucking thing more, because I am so, so scared and utterly tired and possibly crazy, and I don’t see until then that he is nodding and mouthing that it’s okay and the tears are streaming down and he’s reaching over and pulling me close and breathing hard into my neck.
I know he’s heard everything I said and more, and he’s taking it all in. He holds me and tells me that he’s scared too, and later we make our way together down the hall to check on her in the nursery and he stays by my side all night, moving with me through the shadows until morning, a running buddy for this one night, reminding me to breathe, and I don’t know why but right now that feels like enough.
It’s May and I see the early morning light outside. A chorus of birds is welcoming the day.
With spring’s onset, we are gaining a semblance of a routine, having occasional playdates with friends and strolls to the park for picnics as a family. We’ve had a reunion meetup with other parents from our birthing class and are comforted to learn that our little one is not much littler than the others, that she is catching up. There have been no real alarms, only false ones.
We walked out of the last overnight test at the NICU. The pinched-face nurse who had told me I “should be” scared for my child’s life kept rushing in and out of the small room, tut-tutting at my daughter’s incessant fussing and the beeping machines. When her cries escalated to screams, the nurse roughly adjusted the leads and threw her hands up in frustration, ordering me to calm her down. My daughter was getting so worked up I knew if we stayed the night she would be inconsolable. I could not see any point in subjecting her to more tests that would give us more numbers on charts but wouldn’t keep her any safer.
It was time to go. A mother knows these things. So we packed up and walked right past the nurse telling us, You can’t do this, and we came home.
These mornings, I’ve been listening to the birds and witnessing signs of their imprinting. The mother bird calls, Here, here, and the babies return the call in unison, Here, here. Such is the genius of nature, this simple practice of nurturing the familial bonds that can prove life-saving.
I remember our girl’s first cry at birth. Plucked from inside me and hoisted above, she came out with a fierce single exclamation to the world. The doctor and nurses laughed and I cried and trembled with fatigue, waiting for my chance to hold her.
Someday I will forget what her first cry sounded like on that clear September afternoon, just like newborns slowly forget the reflexes they possess at birth. But for now, I can summon it in my head more clearly than any other memory, the one thing I know for certain.
I love the sound of her cry now as she wakes. It says, I am breathing. It says, I am here. I answer her, I am here, little one. I am breathing too.
In Japan they have a saying, to sleep like the character of river. “Kawa no ji,” as they say, invoking the shape of the Chinese character for river, three nearly vertical lines, the middle one the shortest, like two parents sleeping on both sides of their child. To sleep like a river – this is the Japanese way.
It takes us a long time to find our way to sleep. First we have our evening rituals. I continue to hook her up to the sleep monitor, more out of habit than in faith. I bathe her, then rub ointment on the raw and rubbed places of her skin, find new spots for the leads, and thread the wires through her footed pajamas, flick the machine on. It takes several tries to put her down to sleep in her crib. It takes everything I can give. I alternate between holding her in the chair, transferring her to the crib, then scooping her back out when she cries. And then it’s walking around the house, back to the chair, the crib, couch, the floor. I sometimes wander around room to room with her for hours, trying to dance and jostle and coo her to sleep, so that I too can sleep.
It is often out of exhaustion or resignation or dumb luck that I end up bringing her in the wee hours to our bed, where we finally get some sleep – together, untethered.
We get our best sleep here, on mornings when the sky is just beginning to brighten outside and we lie like three glimmering currents of a river. It’s the only place and time we feel the magical tendrils of deep slumber. This is how we’ll make it through our first year: unlikely renegades leaving behind the machines that can’t save us, reclaiming our sleep, and our sanity, in growing increments after too much time spent wandering through the dark.
Finally we tumble into our own rhythm, breathe as one in our shared bed. It’s as natural to me as a river flows down mountains to the sea.
We snuggle together now, my body curled around her, and Dave on the other side. The sun trickles through the blinds and shimmers in the room like drops of nectar. I look at her now, her arms stretched over her head, her face suddenly crinkling into a half yawn and then yielding to a sweet, soft descent into dreamland. I begin to doze and feel the three of us bob and float – we devour the air in delicious gulps as we drift, letting sleep, like a river, carry us.
Author’s Note: We lived in Belgium during the birth and first ten months of our daughter’s life. Most of the nurses we encountered at the hospital’s NICU and sleep unit were amazing, dedicated, and exceedingly kind to us. Upon our return to the U.S., we consulted with a pediatric sleep specialist who ran more tests on our daughter and supported our decision to stop using the sleep monitor for good. We all breathed more easily after that, though it would take years before we could all sleep through the night, and more years before I felt ready to tell this story.
Laura Haugen’s writing has appeared in Carve Magazine and in the anthology, Mothering Through the Darkness: Women Open Up About the Postpartum Experience. She lives with her husband and daughter in the Washington, D.C. area. Find her on twitter @lhaugenwrites.