The Perfect Heart (Part II): Coping with health problems in a newborn.

This is a post about how I spent my daughter’s first night with my hand curled protectively around her wrinkled, velvety head, to prove to her that she would not be left alone again. It’s about learning to navigate the undirectable days and endless nights spent in a cloying, overheated hospital ward. It’s about feeling let down – by my own body, by the hospital staff, and by every mother who never warned me about how awful it can be to have a child. But it’s mostly about how much I love my biggest girl.

I didn’t really sleep for five days and nights after she was born. Though she was alive, and was going to stay alive, she was like a little soft bruised fruit – bright orange, severely jaundiced from rough handling in the attempts to save her life. In my husband’s hands, her tiny head lolled like an overripe tangerine. She slept and slept – not peacefully, but with twitches and snorts and a look of deep concern on her crumpled orange face.

head

They made us stay in for five days. The smooth pebble of her heel was pocked with needlepricks from checks on her bilirubin levels. The jaundice left her exhausted; for the first few days she was plunged so profoundly into sleep that she seemed slack and heavy with dozing.

I didn’t sleep. I mean, I must have slept, but every time I closed my eyes I felt a tug of horror at the thought of leaving her unwatched, unattended. She lay on a heat mat, under lights, naked except for her nappy. All night for nights I sat beside her, unable to hold her, but with my arm snaking around the cables and protective shades so I could feel the steady thrum of her heart beneath my palm. I sang to her, constantly. I needed her to know I was beside her. My voice was cracked from exhaustion and I realised I didn’t really know any lullabies. But still I sang.

I sang anything I could think of – half-remembered nursery songs, old country heartbreakers, classics from Hollywood musicals. If the nurses on duty raised eyebrows at me exhorting her to put her sweet lips a little closer to the phone, then they didn’t let me see. And the brisk doctor scribbling incomprehensible notes on the chart didn’t seem to think it was odd for me to be crooning under my breath to my two-day-old  that she shouldn’t take her guns to town, that she should in fact leave her guns at home. I remembered songs I barely knew I knew. I told her that life was an ocean, and love was a boat – the cheesier the lyrics, the better. It was a bit like falling in love for the first time – even the most trite of sentiments rang with meaning for me.

My skin was crawling with the need to get home. Our tiny rented flat on Osney lock became totemic. Every day I let her scream through the blood-letting, hoping the numbers would read right and we could leave. Every day she needed more care, more light, more nursing. I raged inwardly, filled with self-loathing and blame. My body had always done things right. It wasn’t perfect, but it had carried me for years and miles around bookshops, churches, mountains, cafes, beaches. It had allowed me to dance all night, and shake off too much Jack Daniels, and do it all again the next night. It had even grown a baby perfectly – so why had it failed so completely at the delivery of the finished product? I was grey and shaking with loss of blood, and shock. My cheeks and eyelids were spotted with burst blood vessels. My hands were black with bruises where the veins had blown out. I was tethered to a canula and pumped full of restorative iron. Where was my strength, my bravery?

My mother-in-law arrived, her serenity and good humour and warm arms an oasis of comfort – having her there made me feel like I could breathe again. She brought a stuffed lamb for the baby, which sat comically large, sentry-like, at the head of the cot.

My parents came next. Seeing them so truly filled with joy at the baby’s arrival, so entirely in love with the tiny creature they had only just met, allowed me to feel my first flicker of excitement. Up until that point, I could only imagine how lonely and frightening the world I had created for her must have seemed. I allowed myself to imagine her world warming up, filling with the love and kindness and guidance of two families.

Finally, the numbers improved. We could go home, they told us. Final checks first though. Oxygen levels not quite right, a trip down to SCBU for monitoring, her plumpy hands and solid feet (still creased and flaking from her lifetime in water) trussed up to monitors.

“Concerns” was the word they used a lot. Concerns about her oxygen levels, about the sound of her precious beating heart in their stethoscopes. Get ready, they told me. Get dressed. Go with her to cardiology.

I showered fast, in the never-quite-clean shower in the grimy overused bathroom, wearing flip-flops to save my feet from other women’s blood. I took my travel bag of luxury toiletries, chosen so carefully during my leisurely last days of pregnancy (even now a sniff of that shower gel recalls the sickening lurch of terror and despair), and I blasted the water as hot as I could bear, and I cried. I bawled and howled with my face under the biting spray of the NHS shower and my ears ringing with the thunder of the water on cold grey tiles. And then I turned the shower off and got dressed and took my baby outside for the first time, to visit the cardiologist.

She was like a peeled shrimp in the massive, state-of-the-art, heart-checking machine thingy. Still orange, still naked, still alone. A kind doctor (with daughters of his own) told us there were two holes in her brand-new heart. Not uncommon, he said. Watch and wait, he said. He looked tired from the weight of giving us the news.

We took her home, and we watched and we waited. Being home didn’t make things normal. In fact, having a baby seemed even more weird now that we were no longer suspended in the surreality of the interchangeable hospital days. I missed my husband desperately – we now worked shifts, negotiating handovers and carving out a few hours of sleep alone while the other patted and shushed and paced the sitting room. I watched hours and hours of box-sets, but only light comedies, or serious shows that I thought wouldn’t harm the baby’s psyche. So Dexter was out, but 90210 was in.

Slowly, slowly, slowly, we adjusted. I almost dissolved with relief when a friend from Ireland matter-of-factly mentioned just how shit it is during those first few weeks. It wasn’t just me! I considered putting the baby up for adoption, but I knew my mother or my mother-in-law would have adopted her, and I would have had to see her at Christmas times, so I nixed that idea. I cried and cried, but only when I was alone.

And then she started to teach me things. Yes, there are many practical lessons that a new parent learns. Don’t assume that baby can’t roll, is one. If you are driving to A&E in the middle of the night along unfamiliar roads with a sick baby in the back then you will drive the wrong way up a one-way street, is another. Time loses all meaning – hours shrink and dwindle as you kiss their drooping slabs of cheeks, but the matter of getting out of the house lasts all afternoon.

But I’m talking about how she taught me to love her. She taught me how to be kind and self-regarding, because I don’t ever want her to learn self-sabotage or insecurity from me. She taught me the curious beauty of silvered trails on stretched skin, and that it’s possible to truly love dimpled thighs and bandy knees. She taught me that no matter how wrung out and tired I am, I can do whatever is needed to keep her safe. She taught me that there is a different kind of strength, and that I possessed it (I already warned you about the triteness, didn’t I?).

She’s six now, and she’s still teaching me things. And as I mentioned last time, she’s the happiest of happy endings.

 

But how’s her heart, you ask?

shoe

We got the letter asking us to bring her back for another check-up when she was coming up to five months old. Our new normal was in place. I hadn’t cried in quite a long time. In fact, I spent a lot of time smiling – and making funny faces, and laughing, and singing, and drinking coffee with friends, and getting out of the house on time, and pointing out ducks and choochoo trains, and dressing her in actual clothes rather than sleepsuits all the time.

We both went to the hospital with her. She was wearing little socks that looked like shoes, and my husband made her tapdance on the chairs in the waiting room. When I undressed her to put her in the machine, my hands were deft and practiced and confident.

The same doctor, with the same photos of his small smiling girls, saw us for the exam. He clicked through the screens, changing angles, observing the arcane peaks and troughs of colour. All the while, the steady whoosh of her bloodflow resounded in the room like a wordless prayer.

His eyes were glazed with relief when he told us that she was one of the lucky ones. The holes had closed up by themselves. If he hadn’t seen her personally the first time, then he never would have believed it was the same heart, he said. My husband and I clutched her between us, greedily and giddily planting kisses on her reclaimed body.

We stood up to leave. The doctor smiled. He said, that is the perfect heart.

And it still is.

heart

 

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2 Comments

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  1. This is absolutely beautiful!

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  2. What a treasure. Your words on singing reminded me about how much I sang to Moira in those early years. So similar to your tale – any song I could think of would be made into a lullaby with the right pitch and hushed tones of the sleep deprived mother. One night my husband sang Take Me Home Country Road for three hours straight because it was the only thing he could do that would calm her down and I hadn’t slept in days.

    Like

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