The test results allow us to be wheeled to the ward together, a small victory. Visiting hours are over, so my husband kisses us both and heads home to put our sons to bed. The baby sleeps and sleeps. She will not open her eyes, let alone breastfeed. I try every trick I remember from my other babies: stroking her cheek with damp cotton wool, blowing on her belly, tickling. I hum the same tune I hummed to my sons: ‘I’ve given all I can, it’s not enough, I’ve given all I can.’ Still she won’t wake.
I start to panic, though I am determined to hide my fear from the doctors who want to take her from me. They grow exasperated at my insistence that everything is fine, that breastfeeding will settle down eventually. They want her in an environment where they can monitor her blood continuously. If I can hand-express a certain amount of milk and feed it to her by syringe, they will allow us another few hours to show an improvement in her blood tests. If that happens, they will let her remain with me. If not, well … The threat dangles. So, I think, the test I must pass to keep her with me is to express breast milk? Easy. I ask for paper, a pen, and some bottles. I begin to hand-express, squeezing bright yellow colostrum from my breasts, drop by slow drop. I try to remember to note the night feeds, so I can prove to the doctors how well she fed – efforts that leave me with the following artefact, a sad, barely legible text blurred by the dregs of morphine in my blood.
Expressed 5ml. She’s asleep.
Expressed a bit more. Tried bottle but she won’t wake up. Squeezing some drops directly from breast into her mouth, but it just dribbled back out. Changed babygro. Nappy a bit damp
Still adding to colostrum – plenty pumped, but her gums still clamped. How can I feed her if she won’t let me?
Think I fell asleep. A few minutes anyway. Squeezed drops into her mouth again but think it all dripped out. Nothing
She stirred in her sleep and spat up. Changed Babygro. Nappy dry
Why won’t she wake up??? Tried bottle again. Can’t do it.
Crying now, still can’t get her to drink bottle. What is wrong, her or me?
Asked new nurse for help. She got all the milk into her in no time. Sleep now. So tired
Baby just spewed. all gone. tried to feed her but gums closed. awful. changed babygro and blankets. nappy still dry.
so worried. nurse said try to wake her again soon.
expressed more. squeezed drops on her lips but don’t think she swallowed much really. she won’t wake. scared now
burped her and tried bottle again. failed. called midwife but no answer
can’t stop crying – she’s asleep, nappy bone dry – v scared, don’t know what to do
nurse said she will discuss with reg. baby still asleep
nothing nothing
I don’t show this page to anyone. By 3.15 am my throat hurts again from crying in frustration. I have hand-expressed a full bottle of colostrum and watched it dribble drip by precious drip from the baby’s clenched jaw. I can’t get her to swallow. I am jittery now, jittery and panicking. A registrar pinpricks my daughter’s foot, holds it to the electronic monitor that measures blood levels, and raises her eyebrows. Her voice is calm, but within five minutes two young doctors are wheeling my baby away. I will not be allowed to follow her until I am free of both IV and catheter.
The door closes.
I have failed. My baby has been taken from me, hurried away to breathe elsewhere. I lie staring at the wall. My milk seeps from me, unseen: a pale text in pale sheets.
—
My room is located in a ward several floors above my baby’s unit, but the hospital brings her any milk I can hand-express. A poster in my room blares MOTHER’S MILK IS BEST, and yet the nurse will not let me use their breast-pumps. ‘Hand expression only,’ she says, in a gentle voice. I demand a second opinion, but the registrar agrees with the nurse: it is hospital policy that no woman be allowed a pump until day three after birth. When I ask why, the answer is always ‘Hospital policy.’ I raise my voice. I curse. I tell them that if I do not pump now my supply will drop and I will have no milk to feed my baby once we leave this place. I say that if they refuse I will simply send my husband home for my own pump. I make fists and hit my legs, I shake and growl, and with that they relent.
The machine, when it arrives, is unlike any pump I’ve ever seen. A top-of-the-range model, it is not carried, but rather wheeled in, and yet when I flick the switch, the song is the same, the old chorus of suck/hiss, suck/hiss. All it takes is a whisper of that noise and my breasts begin to weep. I wish I could say that this routine is something of a comfort. It isn’t. I feel cheated and weary; I feel defeated. So many mornings spent pumping for babies in Neonatal ICUs, pitying their mothers, and now here I sit, without my baby, uselessly spilling liquid: milk into the breast-pump, urine into the catheter, while sniffling and weeping into tissues. ‘It could be worse,’ the nurses say – ‘you’re the mum whose baby was nearly stillborn? They’ll take great care of her, below. Don’t you worry. Relax. Rest. Good girl.’ Once everyone has left, the door closes softly. There is only one voice who never leaves my side; Eibhlín Dubh is with me, close as ink on paper and steady as a pulse.
My husband texts me photos of our daughter in her incubator, naked but for a nappy and covered in wires and tubes. This baby doesn’t look like any other child of mine, she looks like one of the babies in the milk-bank leaflets. I stare at the photos, terrified.
I never remember falling asleep in my sad room, but every time I do, I am woken by the cries of infants who aren’t mine. All night, they wail, the babies of strangers, all night they weep and weep into the sterile dark. Every time I jolt up to another baby’s cry, I feel I’ve been dreaming of the same thing, I just can’t ever remember what it was. Something – dark – something – ajar. Whenever I wake, I reach for the machine and pump as though I have something to prove. Nurses swoop through the corridors to arrive at my bedside with clipboards and tiny paper goblets, each filled with pain pills. Ah, I say, heaving myself up on my elbows. Ah.
Once my drip and catheter have been tugged away, I must demonstrate that I can urinate competently into a cardboard bucket. The nurse peers at my sloshing wavelets and nods. I am elated. Soon, a porter arrives with a wheelchair and I lower my sore body into its frame. He pushes me down, down, down, all the way down to the NICU.
It is only when I am finally sitting by my daughter’s incubator that I begin to accept the swerve we have taken. I am not permitted to lift her without permission. Instead, I spend hours staring from beyond the glass, weeping intermittently over the fuzz of her spine, her eyelashes, her tiny hands, how grey the cheek that rests on her arm. It is dizzying to let my body express intimate fears in such a public place, but I do, I let my cries echo those of the others who are also stuck in this room, crying too. It’s a chorus. I join in.
The NICU is a large, long, busy chamber in which multiple scenes are all occurring at once. To allow a weary gaze to hover there for even a moment is to find oneself a witness to any number of private human catastrophes, each in its own slow implosion. Any time I look up from the incubator, it dizzies me with its simultaneity: here, a cluster of registrars shaking their heads over a chart, there, a woman weeping beyond earshot; here, one nurse warms a bottle, there, another lifts a baby while tubes cobweb behind him; here, a father and a mother are smiling, each holding one tiny twin to the warm skin of their chests, there, three doctors shoulder through the main door; here, a man with his elbows on his knees, head in hands, strong shoulders heaving. He sobs. She sobs. We all fucking sob. Beyond his chair, three more couples sit by incubators, scrolling and swiping their phones, while a new mother limps past, rubbing disinfectant gel hand to hand. In any single moment, we are all enduring and crumpling, fighting and weeping, laughing and dozing, watching and being watched. Whether real or imagined, my sense of surveillance here is strong. I feel that I must pass some nameless test with each new professional we encounter. I’m sure that my tantrum over the breast-pump has been noted in my
file, so now I try to make myself smile politely, imagining that there could be some correlation between the level of normality I can feign and how our daughter might be treated. All I want is to fling myself to my knees and beg the doctors to let me hold my daughter, but I can’t do that. If we are to take her home, I must both control myself and relinquish control to them.
Within the ward, I am shown to a smaller, narrower room with cold leather sofas, a sink, a fridge, a TV, and a row of breast-pumps. The nurse calls it ‘the milking parlour’. Beyond its door, I find the other mothers: the blonde teenager in a Snoopy nightie, the teacher with pearls in her earlobes, the farmer, the smoker, and all the others. Every two hours, we leave our incubator vigils and hook ourselves up to the machines, watching afternoon repeats of EastEnders and Room to Improve and discussing the merits of galactagogues: oats, fenugreek, and dandelion tea. We pass the stories of each new horror in hurried whispers, mouth to ear to mouth to ear. The stories we tell are inoculations, repeated in the unconscious hope that they might protect our own babies from sharing the same fates. No logic attaches itself to this impulse, just as little logic seems to attach itself to the cruelties that are being inflicted on our infants. In this room, we laugh more than we cry, but we are all exhausted and terrified. One woman wears a niqāb, the rest of us are in pyjamas and slippers, and we are all in hell together.
The unit is organised according to the severity of each baby’s condition. My daughter starts on C Wall, where babies are sometimes discharged within hours of arrival. I spend all our time on C Wall yearning to carry her back to the maternity floor with me, thinking that we could be given permission to do so at any moment. When she is moved to A Wall I daydream about bringing her back to C Wall. On their rounds, the doctors discuss her most recent bloods and tinker with her glucose drip. I hold my husband’s hand tight. Our baby is so weak that she doesn’t cry, no matter how often the nurses poke her heel with their tiny blade. I live for the times when I am allowed to nestle her to my breast in weary bliss. I press my lips to her heels when the tests make her bleed, my mouth tidying droplets of blood until her skin is clean.
Although she is kept at the A Wall, I feel lucky. Her endocrine problems may be complex, but the doctor’s treatment plan seems straightforward by comparison with the stories I hear in the milking parlour. Some days are dark, the doctors’ reports delivered with shakes of the head. On others, we feel sure that somehow, some day, we will leave the NICU. When she is strong, she feeds from my breast, but when she is weak, my milk comes to her by tube, by syringe or by bottle. I go to the milking parlour every couple of hours, not only to keep a supply of my milk available, but also because it’s the only thing I can do that feels useful. Whenever my breasts tingle, I tuck some words between elbow and rib and slipper-shuffle back to that narrow room again. There, I pump and read as I always did at home, and sometimes it feels almost normal. I slide my bottles into the fridge alongside those sent by the milk bank, each with their neatly handwritten labels, each bearing the names of strangers.
Time veers weirdly in the NICU. The ordering of events seems to blur and rumple unexpectedly. I get so little sleep. I hurt myself. I fall against a wall, crashing my head into a corner, or tumble into a door as it slams on my shoulder. My body develops its own account of these weeks, a vocabulary of bruises, aching breasts, dressings, stitchings, and a slow, tender limp. One afternoon, my parents visit the glass door of the emergency exit next to our incubator, and one by one, they lift my sons up. I miss them so much. While the boys blow kisses to their tiny, sleeping sister, I turn my wet face away. Through this same glass door, I have seen a bird fluttering over the slip-road to land on the branch of a young tree. I have watched an ambulance freewheel silently towards the garage. Twice, I have seen a hearse there, its wheels turning slowly over its own shadow.
I grow fond of the cleaners in their pristine smocks, the choreography of their homely routines: the swift swirl of an industrial mop, the smile, the cloth-rub, the nod. I learn their names and their idiosyncrasies – who swipes the light switch before the filing cabinet, who makes eye-contact, who tells a joke, whose gaze clings respectfully to the floor when they find me snivelling again. I grow homesick, watching the dance of their cleaning; I ache for my washing machine, my broom, the tick of my kitchen clock, the tick-tick of my lists. No day here is predictable, no day is the same. I fret over what will happen next; I fret and fret and try to force myself to relax into the dread, but nothing here makes sense. Everything I see seems to be occurring in a rush, both too close and at a great distance from me. One afternoon, on my way to the bathroom, I see a teenage boy follow his partner’s wheelchair into the unit. She is very pale under her freckles. A nurse hugs her. Behind them, the baby is wheeled in by a group of doctors, followed soon afterwards by a priest. The room grows silent around them – or maybe I imagine that. By the time I return, they are all gone, and the NICU is bustling as usual.
—
I grow angry whenever nurses ask me to leave. Shortly before any procedure, they arrive, gesturing towards the corridor. When I grow vexed, sighing rowdily, they insist, and if I have learned anything about myself here, it is that I am weak. I always relent. On a leather sofa in the corridor, I sit and glare like a child until finally they invite me back to find a new dressing covering a new wound. I loathe them for making my baby and I suffer alone, when I know I should be by her side.
One afternoon, I witness this same choreography played out with the family who sit at the incubator opposite ours, the parents shaking their heads to the spread fingers of the nurse, her tilted head, coaxing, coaxing softly, and eventually, their resentful departure. I recognise the father’s tight fists behind his back. After they leave, I watch a screen assembled around their baby, a boundary intended to generate an illusion of privacy. The screen cannot mute the infant’s screams, however, nor can it block the song of the nurses who stroke its brow, who coo as they hold it still for whatever agonies of syringe or cold scalpel that follow. This tiny howl is a sound I will never excise from my memory. I weep as I listen – I weep in helplessness, yes, but I also weep in gratitude for those nurses’ certainty that parents must spare themselves from witnessing a child’s agonies. The nurse insists. The nurse stands in their place.
—
In the milking parlour, the conversation loops around and around and around. It is a room bound by spilled secrets and fear, a room that exists in a spiral of its own repetitions: bleeding nipples, murmurs, infected wounds, heart operations, dwindling yields, surgeries, unexplained pains, referrals, queried clots, the list goes on and on and on. Hope. Home. Meningitis. Crumlin. Home. Coma. Home. Home. Home.
Whenever a baby does go home, I watch the mother carefully. On entering the milking parlour to say goodbye, her face reveals a muddle of relief mixed with pity for those of us who have to stay. I am glad for them, and yet these moments always feel like a betrayal. A childish part of me wants to keep everything here the same. When new mothers arrive, we show them how to use the pumps and where to store their milk. We listen to their stories. We pass them tissues. We say the magic words, we tell them that everything will be OK. We pat their hands. We smile. We know, unequivocally, that everything will not be OK, at least not until they can escape this place, but such is the script of this room, and we adhere to it loyally. These weeks teach me this performance, just as they teach me to sleep in a chair, my head lolling and falling, my gaze faltering between glaring fluorescence and the warm dark of elsewheres.
—
One morning, a consultant holds my daughter’s chart aloft and announces that today is our day. He utters the word I have yearned to hear. Home. I am so joyful that I cannot speak. I grip both his hands in mine and nod and nod, I hold tight until his gaze falls to the floor and his jaw grows hard, and still I thank him, still I grip and grip, so afraid am I to let go. If I do, he might change his mind. I grip him because some strange part of me is afraid of walking away, and that part of me wants to
stay. Here, my daughter is safe, monitored by machines and by professionals, but at home there will be only me. Only me. I may be relieved to return home, but I am also terrified of leaving this ghastly familiarity. Even horror can be homely. The consultant watches all this play across my face in silence, then tugs his hands away, and pats me firmly on the shoulder. ‘Everything will be OK,’ he says.
My hands shake a little as I clear cupboards of our nappies, babygros, and blankets, the crumpled coffee cups, my photocopy of the Caoineadh, and my stack of long-overdue library books. I wiggle my daughter’s hand in a wave goodbye. Finally, I will bring her outside.
A Ghost in the Throat Page 4