In Every Moment We Are Still Alive Read online

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  Tompa, where are you? asks Stefan down the telephone. I need to find Livia but I don’t know the way back. Where are you? he repeats. I went with Karin, then I got lost down here, I’m here now. Tompa, are you at TICC? Yeah, I’m sitting here outside the section. Tompa? It’s okay, I’m just tired. How are things with Karin? Not good. Wait, I’m running, I’ll be there in a minute, can you remember what floor you’re on, you don’t have to answer, wait. I hear Stefan panting and the sound of him sprinting on gravelly tarmac. Tompa, I’ll find it, just sit tight, I can see the parking now, it should be right, I’ll ask the first person I see, I think this is it, yeah, Thoracic Clinic, here it is, I can hear you, Tompa, you don’t have to answer, we’ll talk later, damn, Tompa, just stay where you are, I’ll be there in a few seconds.

  The stillness in Neonatal, the slow movements of the midwives, the whispering voices, the milk replacement which they heat in microwave ovens and which smells like honey, the teddies, the dolls, the faint cooing noises from the incubators, the noticeboard by the entrance with photos of babies and parents, and the corridor decorated like a pre-school. All this space to breathe. I sink into the armchair and put my legs up on the footstool. Livia closes her eyes. Her chest moves, sometimes she curls up her fingers. I am woken up by the father of the kid in the next incubator. He pushes my arm and says: Hey, my wife needs the feeding chair. He’s skinny, with a large, hard belly. The woman, who’s much younger than him, stares at me. I thought it was just a normal armchair, I say, standing up. She’s feeding here, take one of those, he says, pointing at two wooden chairs by the wall. It is actually a feeding chair, his wife reiterates. He drags the armchair and the footstool across the floor, the scraping sound fills the whole room. Livia starts moaning, I go over to her. She’s wearing sunglasses and lying under an ultra-violet lamp. I can’t have been sleeping for more than an hour, but that lamp wasn’t there when I arrived. I give her the dummy. The woman sits in the armchair, preparing to feed her child through the tube, the man sits on the footstool in a sort of sentry position. I ask in the reception why there’s such a strong lamp over Livia. The midwife explains that she has a higher level of bilirubin, so needs light therapy a few hours per day. Okay, I say. Premature children often have that, she says, it’s nothing unusual, it’s what’s making your daughter’s skin slightly yellow, the light breaks it down, and then she passes it out in her urine. Doesn’t she look cool in her shades? Yes. It’s like she’s on the beach, isn’t it? she says.

  The walk between Neonatal and TICC takes about twenty minutes with Stefan, David, and Hasse guiding me through the basement passages. Sax is tapping on his computer when I come into Room 2. He doesn’t look at me. Husband? he barks. Yes? Can I have a few words with you? Okay, I answer. He leads me into the corridor and cranes his neck so I can look into his half-crazed eyes. While he intones about the risk of Karin passing away from the slightest intervention, we’re joined by Helmer Lovén, the older doctor who first admitted Karin at TICC. He has a double chin, bags under his eyes, huffs and puffs in a reassuring way when he opens his mouth: Despite everything, we’ve seen a slight improvement since this morning, your wife’s lactate levels have dropped considerably, I think the last time we checked it was at eight or something and going down, we can probably expect to begin chemotherapy as early as tomorrow. Thanks, I needed to hear some good news, I answer. Sax leans forward even more and says in a muted voice: I heard that all information should go via you first? I can’t cope with any information unless it’s coming directly from the doctors in charge, I say. We can fully appreciate that, answers Lovén. That was also Karin’s wish before she was sedated, I say. Understood. Sax nods.

  The sounds in Room 2 are difficult to get used to: the hissing membranes in the ECMO machine, the vibrating cannulas, the wheezing and gargling of the respirator, the dialysis machine, the infusion stands, while from the window you can hear slamming sounds from a construction site, a huge pit, bucket loaders, cranes, drilling machines. On large streamers it says: Building the hospital of the future! The intensive care bed has a high rim of plastic moulding along its sides with built-in monitors, it’s cranked up so the medical staff don’t have to bend down, while sitting on the stool I can’t reach Karin, I can hardly even see her, which means I end up standing up, but I have to keep in constant motion so I don’t get in the way. An assistant nurse pats me on the back and says: Someone from Central IC came over with this photo. It’s the laminated photo of Livia. Can I keep it here somewhere? I ask. Yeah, that’s fine, she answers. I reuse the old pieces of sticky tape to fix the photo on a pillar by the bed. We’ll be massaging her uterus every fifteen minutes, it’s to staunch the bleeding, she’s bleeding heavily from her lower abdomen, she says. Okay, I answer. She’s wearing latex gloves when she prises open Karin’s eyelids. Her right eye is red, it looks like a fisheye. Plasma is running from her tear ducts.

  In Neonatal, at midnight, a lamp lights up the midwife’s desk. I mention to her that a night nurse at TICC said it was a bad idea to put Livia’s cuddly blanket on Karin’s chest. Uh-huh, well I don’t know anything about that, answers the midwife. Could Livia absorb something poisonous from the blanket? I ask. Do you want me to ask our doctor? Probably just as well to, if that’s okay. Sure, now, or…? If it’s not too late? No, she says, and walks over to the reception as slowly as only Neonatal staff can walk, then when she comes back murmurs: He’ll be here in a minute. I jump to my feet: Is it serious? No, not at all, he said there was no problem, he just seemed to want to tell you himself. The paediatrician is short and wiry and speaks with a German accent. He looks either at the floor, or at one of my hands. I am told that, along with another paediatrician, he is responsible for everyone in the Neonatal ward. He explains that there’s nothing dangerous about Livia having a blanket that’s been on her mother’s breast. He waits for me to respond and then, when I don’t, adds: I called the Haematology Department just to be on the safe side, it’s fine, you can carry on with the blankets. Thanks, I answer. He moves half a step closer. We’ve listened to your daughter’s heart and looked at the X-rays, he says. Okay, and is everything all right? He taps a little notepad against his hip, then stops and explains that Livia has what’s called patent ductus arteriosus, a prenatal blood vessel between the pulmonary artery and the aorta which, in children born after full gestation, withers and disappears, but in premature babies is sometimes still there; the blood likes to take a short cut through this duct, you can hear it like a sort of whistling in the stethoscope. Okay, that doesn’t sound so good, should I be worrying? I don’t think so, it’s not all that unusual, he answers. Okay, so what happens now then? Nothing yet, but the heart will have to be listened to later, there can be problems with the circulation if it doesn’t disappear. Usually it does so by itself, if it doesn’t we can operate or give medication.

  The night nurse at TICC is skinny, blonde, and has a nose like a parrot’s beak. She approaches me, eating an orange: As I said, I think it’s a bad idea switching the blankets like that. I tell her I’ve spoken to the doctor at Neo, and that it’s not a problem. I’m her intensive care nurse, I’m the one taking care of her, I’m telling you it’s a bad idea, they’re in their own bubble over there. The doctor at Neo had it okayed by the haematologist, I say. Obviously miffed, she answers: Do what you like, but if it was my child I’d give it a miss. She washes her hands and rubs disinfecting gel into them and, when she pulls off the tape around the cannula in Karin’s hand, pieces of skin peel off.

  I’ve learned to find my way through the basement passages: the sign covered with a black bin bag, the burned-out fuse box, the oily sock that seems to have been hanging for years on an emergency exit sign, the chipboard at the T-junction, the hastily scribbled numbers on the support strut of the side railings, the thick black skid marks of truck wheels, the cable-ladder with a broken fixture. David falls asleep while we’re lying chatting in Family Room 1. I shave, brush my teeth, shower,
and go back to the bed. I check my telephone. Almost thirty missed calls and as many texts. Three of the calls are from my father. He hasn’t left a message. It feels like I’ve been living in Family Room 1 for months. Sometimes I think it must be even longer than that. I’ve grown attached to the view of the brick wall and the colourful eggs glowing in the dark. I know that I’ll soon have to leave the room and go home with Livia. I’ve become afraid of the flat, Lundagatan 46 scares me, I want to be able to run between Livia and Karin in fifteen minutes, to change the orange blankets at any time of day or night, and I like the proximity of the Neonatal nurses and the midwives, I even like the hospital’s instant coffee and the dark cement mosaic in the stairwell, the blue-green wooden cupboard above the bed where I am keeping the presents, the Italian chocolate, the drawings made for Livia by our friends’ children, the clothes from Polarn O. Pyret, the books, magazines, postcards of fox cubs and angels. That first day in Karolinska I was given a map of the hospital, I folded it and put it in my jeans pocket. I turn on the reading light and get the map out. A thumb’s width corresponds to about thirty metres. I measure the distance through the air between Livia’s and Karin’s beds.

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  Sax is sitting at the computer in Room 2 as usual. Is there still a shortage of beds in the ECMO Unit? I ask. I wouldn’t let her go now anyway, he answers. Okay. She won’t survive another move, he adds, standing up, stretching, rubbing his eyes, then goes on: Your wife has poor circulation in her right leg, her foot has gone cold, its coloration has deteriorated, so we decided last night to make an emergency addition of a distal perfusion catheter. Okay, I answer blankly. Sax presses the tip of his tongue against the corner of his mouth, his pupils are no wider than the point of a needle, he massages his temples and says: It failed. Okay. The artery is small and too deep, about five centimetres, it’s not clearly visible using ultrasound, the conditions are difficult, oedema and a lot of subcutaneous tissue. I tried it myself this morning, it didn’t work. What does that mean, then? We’ve called in the vascular unit, they will come here this afternoon, they will open up her thigh to reach the artery. If the vascular surgeon doesn’t manage it we will have to amputate. Amputate? I ask. Yes, he answers, rubbing ointment from a tube onto his lips. Take her leg off? I ask. Precisely, yes, amputate her right leg.

  The Day Room at TICC is minimal, a chair and a two-seater sofa, a small toilet and a window with drawn tulle curtains. There’s no space for me, I stand in the doorway. Sven yawns repeatedly and Lillemor sits with her handbag on her thighs. Måns sits facing them, then stands up and leans on the table. He offers me his seat. I sit down. Her lactate is better, I say. Yes, we heard, answers Sven. His face is red, and there are pearls of sweat along his silver fringe. Lillemor fans her throat with a bus timetable from her handbag. I’m feeling optimistic, I say. That’s good, Tom, Sven answers. Mum slept here on the sofa last night, says Måns. How was that? I ask. I’ve slept better, she answers. Don’t they have a family room? There is one, but I won’t put my foot in there again, it was dire, she says. Don’t you get people coming in here? I ask. They leave as soon as they see me, she says. Have you been to see Karin? I ask. Yes, Måns replies. Sven clears his throat all the time, often when he hears people criticising psychoanalysis, or just generally if he disagrees with something, or if he’s about to say something important. We’ve only seen Karin once here at Karolinska, you have been with her a lot, I can imagine you’re getting used to it, he says and clears his throat. Yes, maybe I am, I answer. It wasn’t an easy thing, he says, seeing one’s own daughter lying there with all those machines.

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  The main entrance is a construction of glass and thin ribs of steel, and through the doors I can see Karolinska Vägen and the North Cemetery with mausoleums, gravestones in the shape of small obelisks, memorial groves, chapels, old bare deciduous hardwood trees, and black wrought-iron gates. Only when I take the map from my back pocket and decide on an exact route around the hospital do I find the energy to set off. I keep close to the brick walls and the ivy. Outside the Centre for Molecular Medicine I catch sight of Callmer. He’s walking slowly and looks deep in thought amidst all the people rushing around him. I stare down at the concrete paving stones, I walk at a good pace but slow down by the hospital park. The branches are lashing against each other, there’s the slamming of wheel loaders and diggers, Portakabins have been lined up along the tarmac-covered path. I decide to make a detour from my planned route and sit on an outcrop of rock in the park, which has a view of a pond and the back of the hospital. Wood chips are spraying from the chainsaws of the tree surgeons, chips that are tossed about in the wind and come raining down over me, there’s a smell of burned wood and oil, it is a little like the smell in the hospital basement. Rusty red and smooth branches are lowered from the pine trees into the back of a lorry.

  Livia has been allowed to come with me into Family Room 1 for a few hours. She’s filled out a good deal, she has round cheeks now and sleeps with her chubby arms behind her neck. I pick her up and carry her against my chest. Her umbilical cord stump looks like a little morel. One of the more dynamic midwives knocks at my door, enters, and sits on the chair in front of the guest bed. She has a body and skin that remind me of a healthy Karin, her throat is smooth and pink, her body long and ample. Can I just butt in for a quick word? she asks. Okay, I say, ashamed of my sweaty feet, BO, and bad breath. It’s about the room, she says. What about the room? Now that Livia has perked up she doesn’t need to stay here any more. I know your wife is in TICC and everything, but our departmental head takes the view that the family room is in principle for mums who need to recover after giving birth. I put Livia back into the incubator. I’ve already spoken to the departmental head, he said I could stay here for as long as I had to. Yes, that’s what he thinks, he’s in charge when he’s here but he goes back and forth between Karolinska and a hospital in Germany, she explains. Who’s making the decisions now, then? I ask. I don’t think you’ve met her, she says. Okay. I know how it sounds, she looks at it in black and white: in black-and-white terms Livia is healthy and doesn’t need to be kept here. In black-and-white terms Livia’s mother is seriously ill, I say. You don’t have to convince me, I see it totally like you do, it’s just that technically she’s not in the care of this ward. When do I have to leave the room? I ask. She hasn’t said, it depends on how many premature babies we have coming in. Can’t I stay somewhere else around here? I’ll check. I think there are rooms you can rent, but at Neo there are only the family rooms, you can only use the guest accommodation for a night or two. She puts her hair up in a fluffy hairband and goes to the incubator.