‘It was impossible to explain to anyone who wasn’t in it’ - Victoria’s story (part two)


Victoria describes life in the parallel universe that is a NICU and parents’ accommodation far from home, and how it stays with you long after you've left the unit.

Our lives became punctuated with the beeping of dozens of monitors on the 25 babies in the ward. I heard those monitors for months after we had been discharged. I’d wake in terror, dreaming of them crashing, as we heard so many times during our stay. Our hearts swelled and emptied on the latest oxygen saturation reading, the results of the latest heel prick test, the weigh-in, how enriched the air needed to be for his heart to not exhaust itself with effort. Time on that oxygen machine was like living through static on the radio. The oxygen dial was reset by feel several times a day as we all searched in the dark for a clearer song.

Unbundled from the blankets he’d been first handed to me in, naked but for a tiny nappy, he looked thinner, bluer and more frail than I remembered. We couldn’t really see his face for masks and tubes and hats. He was unrecognisable, in fact. He was moved to the room with one on one care.

The staff were amazing. They explained every tube, every test. They taught us how to change his nappy and make him comfortable. We started syringing fluids down his nose and into his tummy. He was allowed out briefly for his first bath. Soon, we became old hands.

Without looking at the other babies, we began to identify from the bleeps which ones were most poorly. The baby opposite us needed daily blood transfusions. In two weeks that little baby was never once visited. It broke my heart. Maybe they’d given up hope. Maybe they had sick siblings at home to look after. Who knows. Who could blame them? I tried to pray for her and in those prayers I thanked every person who had donated blood. They were the difference that kept her Mondays turning into Tuesdays. Privately, and with shame, I rejoiced that my baby was stronger.

Even though my son would have to receive nourishment through a tube, I was encouraged to express milk for him. Anything I could manage would help, I was told. He was losing weight rapidly. I hated myself for nothing coming out. I tried so hard. I would attach myself to a pump for forty minutes on the highest setting every three hours in the hope that something, anything, would come. I’d rinse the tubes of my own blood and sterilise them in silence before putting the equipment back together for the next mother. It wasn’t until much later that I learned that it is very common for mothers whose children come early to not lactate.

As soon as I could walk I was discharged. We suddenly had a new problem. Where would we stay? I had to be on hand every two or three hours at the hospital. We had no idea how long this would go on for. Days? Weeks? Longer still?

Friends and relatives wanted to know answers that we couldn't give. We weren’t living in twenty-four hour periods anymore. It was impossible to explain to anyone who wasn’t in it.

Some babies were celebrating their hundredth day on the ward. Bitter-sweet anniversaries were marked with cards and bunting festooning the foot of incubators. The staff got us a place at the Ronald McDonald House. We had a free bedroom, a bathroom, a communal kitchen and TV room but the most important thing it gave us was a community. All the other residents were also out-of-town parents of children who had to stay indefinitely in the hospital.

The kindness of strangers insulated our little family in love. We were embraced wholeheartedly and without judgment by a community we never previously knew existed.

Families came and went. There was a teenage single mum whose kid had cancer. There was a lovely couple whose son was also in the NICU. They’d been there much longer and knew the ropes. They pointed me to Bliss. They’d bring back leaflets and send us helpful links on Whatsapp. They knew which was the best breast pump on the ward to make that gruelling, eight-times-a-day humiliation less upsetting. They got us involved in World Prematurity Day when it came round and we were both still there. Together we’d rifle through the weekly offerings from a local knitting club and pick out a tiny hat, or boots, or maybe a fancy blanket, to build miniature wardrobes for our premature sons.

The kindness of strangers insulated our little family in love. We were embraced wholeheartedly and without judgment by a community we never previously knew existed.

One night in mid-December, it was too much. It was the middle of the night. I was making the 200 feet crossing from the hostel to the hospital to try to feed my son again. Head down against the chill, with no coat, I rounded the corner too quickly and knocked into a priest coming the other way. I batted away the black cassock through a flurry of sleet and we looked at each other for a moment in shock. There’s only one reason a priest leaves the children’s ward at 3am in the snow. I thought of the teenager with the child with cancer. Please let it not be her.

Once our son was well enough to be transferred, we said our goodbyes. Our son, William, was put in a giant plastic tank, loaded into an ambulance and blue-lighted 300 miles south to a special care unit at a hospital a few miles from home. That evening, for the first time in three weeks, I wore a different jumper. My own from home. I’d been in the same one, my husband’s, since the day I was helped out of my hospital gown. We didn’t have the time or the inclination to go shopping. I’d been washing the same underwear in the sink each night for three weeks. What a joy it was to not have radiator-crusty knickers.

I was gone just an hour. When I returned to this new ward, I found my William’s cot empty and a woman I’d never seen before feeding him formula from a bottle. No tubes. No syringes. It should have been a moment of celebration. Instead I was distraught. He’d never learn to breastfeed from me, his mother, if he graduated straight from tube to bottle. Without a nursing child my body would never learn how to nourish a baby. I’d failed. He was hoovering it down though. It was the turning point that I needed to see.

We took William home two weeks before his due date. We swelled with pride as we dressed him in clothes labelled for a newborn, boasting to each other about how they were only now just a little too big for him these days. We strode across the car park feeling like we’d conquered the world. He grew big, boisterous, adventurous and creative. I can hear him giggling with his Dad upstairs now as they perform the traditional after-bath ritual of tickles on the bed.


There have been tough times. Weaker lungs have meant emergency trips with various respiratory infections. We ride out winter months on different coloured inhalers. With the benefit of distance, I realise now I suffered from post-natal depression. The trauma of living on edge, only for the moment, with never more than forty minutes of sleep for a month, took its toll. I became obsessed with routine and cleanliness in a desperate bid to keep William alive. I would hear sirens when there weren’t any. I didn’t register physical pain. My hands were burnt and swollen from steaming bottles. They were covered in cuts from kitchen mishaps. My knees were bruised from stumbling off kerbs and into potholes and forgetting to stand up again. I woke, soaked with sweat, from indecipherable nightmares for almost a year.

I was jumpy and remote. I was self-critical and aggressive. It would take me weeks to reply to friendly messages. I performed all the tasks perfectly but took no joy in any of them. Progress and setbacks were a direct reflection of how good I was as a mother. Whatever I did, it was never good enough. I monitored him endlessly.

Bliss was there for me then, too. Late at night I would read and re-read pages on the website. I would forensically examine testimonials to see whether they sounded the same or different from my own experiences. Was what I was experiencing out of the ordinary? Or to be expected given the circumstances?

My GP never picked up on it. A community midwife came once. She took a look at my obsessively neat three bed house in a leafy part of town, an expertly swaddled newborn and, I suspect, thought there were far more deserving mums of her time, struggling on a lot less. I’m sure she was right. We were both stretched and just doing our best. It’s hard to know when to ask for help. I never did. But I was able to receive it gently, unobtrusively, when I needed it the most. I will be forever grateful to the people who scooped us up, took us in and quietly held our family in their care.

Want to share your story with us?

If you have had experience of having, being, or caring for a premature or full term but sick baby in neonatal care, we would love to hear from you. Fill in our online form to share your story with us.
Share my story