Henry, my IUGR baby

By rhythm & method

My son has been given pseudonym for this story. Although it is my story to tell, it is also his story and he deserves his privacy.

When Henry was born, he weighed 1850 grams. He was full term, but tiny. He just needs fattening up, my obstetrician told us. It sounded simple enough, but it involved him being moved from our local community hospital to the only public hospital with a special care bed available, 50 kilometres away in Dandenong.

Henry and I spent our first night apart. He travelled in an ambulance to an unknown city, while I stayed in Nearest Big Town Hospital attached to a drip of morphine after the emergency Caesarian. It was a foggy day. My clearest memory is waking up in the middle of the night to the sound of a baby’s cry. When I realized it wasn’t my baby, I began sobbing, my chest sinking with each clumsy grab for air. My chest felt tight, like someone was sitting on me; my sobs weeping out like bellows blowing on a sad, raging fire. I pressed the buzzer for a nurse.

“That’s normal. You’ve just had major surgery,” she offered. A stitch: the air my body stole during the Caesar, trying to escape. She was the same nurse that milked me just before I’d gone to sleep. She was only a couple of years older than me, and a local. She charmed me like a farmer milking his best jersey, gentle and easy. Relief: I was finally doing something right, that specimen container of yellow-gold liquid in the fridge was for my baby, and I was going to take it to him the next day. But at that moment I was weeping, unable to sleep, sleep being the road I had to take to morning and the moment of holding my baby.

“You’re due for your pain meds. Would you like a sleeping tablet too?”

“Yes, please” I nodded with a whisper.

“Can I please have something to eat to try to keep it all down?”

“Sure, I’ll find you something. Would you like tea?”

She brought me two packets of biscuits wrapped in plastic, one sweet and one savoury, and a cup of tea made in her own mug.  It had an ugly, geometric pattern in pastel shades that reminded me of home: not my home, but someone’s home. It was weak and milky and sweet, and carried me back to sleep.

The hospital loomed large in the distance, over the chaos of Dandenong’s housing commission houses and bustling traffic. The ride over in the ute was bumpy, but I was relieved to have avoided the fanfare of an ambulance trip. Maternity was upstairs through a maze of corridors and past a series of windows covered with corrugated iron to protect patients, staff and visitors from broken glass.

The Special Care Nursery was hidden behind a narrow, heavy door, its delicate inhabitants hidden in a thoroughfare near the lifts and the public toilets.  The smell of alcohol rub far outweighed the familiar nursery smells of milk, or talc. Each Isolette unit had a busy, hand-made name label with Disney characters dancing around the more pedestrian details of baby’s name, date of birth and birth weight. Most of the babies were small; the majority were premature, some of healthy weight but sick. Henry was parked at the end, the only baby without a name plate. He was the new kid, not from here.

It was hard to look at him in the Isolette unit. This was not a baby ready for the world. 1850 grams of bone and paper-thin skin. His lack of any visible body fat made him appear long, and misshapen like an alien.  His little chest rose and fell like a sheet flicking in the breeze.

I approached the nurse scrawling on a clip board next to his Isolette.

“Hi, I’m Henry’s mum.”

Our first breastfeed was perched atop a stool, next to his Isolette unit. The nurse gave me a pillow to prop him up and bring him to me. I appreciated the fresh pillow slip she insistently slipped over the rubber pillow. Henry screamed and nuzzled into me, as if to say “Where have you been?” Though flustered, it was good to hear him yell. I felt comically large compared to him, every part of me still swollen and bloated from the pregnancy. It was hard to fathom how I could be so healthy and he be suffering so silently inside my body.

I stayed 3 nights in Dandenong before heading home without Henry. When I arrived home, the anaesthetists’ bill was waiting in the mail box.

Nobody knows how to say ‘congratulations’ when you have a sick newborn. Our families and friends were uncharacteristically quiet on the congratulations front. The lack of visitors didn’t really register: in those weeks when Henry was in hospital, there was only our family of 4. As soon as we woke in the morning, we were arranging to go to the hospital an hour’s drive away. We packed a lunch and snacks, dropped our big, strapping 2 year old off at childcare or a grandparent’s house, then made the now familiar journey to Dandenong. It reminded me of commuting for a full-time job, except I couldn’t drive. Mr Karen drove my stapled self around like Miss Daisy, and I relished his company.

Henry spent his first week in an Isolette unit, attached to an IV drip to treat hypoglycaemia. After a week he graduated to the fresh air of a Perspex crib. We alternated breastfeeds and feeds through a nasal gastric tube. He was too frail to take a full timetable of breastfeeds, the nasal gastric tube providing maximum calories for minimum energy expenditure. Because of our need to care for our eldest son, and me being unable to drive, the most I could offer Henry was 2 feeds a day – at the beginning and at the end of our day long visits. The rest of the time I relied entirely on the nursing staff to care for him where I couldn’t.

The nurses found ways to nurture him in a world too big for him. They fashioned once gaping nappies to fit snug around his belly, threaded a flannel through the ring on his pacifier so he could lie on his side and not lose it out the side of his mouth as it bobbed in and out in ferocious bouts of sucking. They changed his bedding every day, carefully folding and tucking, a delicate origami of flannel cloths and cotton sheets with ‘Warragul Linen Service’ stamped in blue. His nest: a little, safe, warm place, like surrogate hands to hold him and ease the burden of a head too heavy for a body too frail.  Every day the nurses made notes for change-over describing the position he had been sleeping in, making sure he was turned every now and then like a rotisserie chicken. Their routine gave me comfort, soothed my anxious, wired mind. Each day it became easier to leave him, but still the horizon of having him come home seemed to stretch on endlessly in the distance.

During the night, I fed the breast pump. I would wake to it as though it were crying for a feed, then with the TV muted in the nursery, I would pump away. As the milk started to flow, so would the tears as I thought of my little man 50 kilometres away in a Perspex box. If I cried too much, the milk would stop. I had to think of him for the let down but once it was flowing, focus on something else.

I had a system, pumping milk every 3 to 4 hours, labelling the bottles, storing them in the fridge. It was the only thing I could do for him, and it felt like the most important job I’d ever been given.

We carried that milk around in a lunch pail like it was uranium.

After 2 weeks in Dandenong, Henry was transferred back to Nearest Big Town Hospital having finally reached the grand weight of 2 kilos. He was the only paediatric patient in a maternity ward of 8 beds. Occasionally he would share the nursery with other babies, but these babies were healthy and hungry, and only came to the nursery for a night at the most. Henry was a permanent resident, like a little pink piece of furniture to be wheeled out of the way when someone needed to weigh and measure a new arrival. But he was obliging. He rarely cried, he simply seemed happy for the company.

I got to know the hospital pretty quickly: the shift changes, the nurses’ perfumes, the rumble of an approaching teacart. But I wasn’t there for the company. I would come in, collect Henry, find an empty room or chair, and would disappear for 3 or 4 hours. I couldn’t tell you what I did in that time. Breastfeed, of course. Mainly though, I think I just looked at him. Imagined the way he might begin to fill out, and look more like he would have if things hadn’t gone wrong. Some days I couldn’t manage to get out of the car park; sitting in the car, engine switched off, crying so hard the whole car shook. I wouldn’t stay long in the car, just until I could get my breathing right. I could never stay too long, what if Henry woke up early and needed a feed? My skinny, tiny boy.

On Henry’s second last day in hospital, they asked me to stay the night. We even got our own room. This was our first night sleeping in the same place since he left my body. It was one of the two smallest rooms in the ward, with a shared bathroom. The girl next door had just given birth in a labour suite across the hall, before they wheeled her and settled her into her room. I heard her coming and going to the loo most of the night: the creak of the heavy door, followed by a hollow thud. I woke in the morning to a bin full of bloody sanitary pads. I remembered what that felt like, to be that tired and sore, yet so euphoric; I almost felt envious of her. But then I remembered: Henry was coming home today.

On Sunday, Henry turned 3. When he comes to my bed in the dark of night, I lift the doona and he fits into the curve of my body, pressed up against my belly. Together we lie, an open bracket and a tiny dot. He still fits that space so well, and I find it hard to imagine a time when he will outgrow me. That said, I find great comfort in knowing that he definitely will outgrow me. Of this I can be sure.

 

Categories: Small people