Inside the NICU: When Your Whole World Becomes a Hospital Room

Being in the NICU is like entering the twilight zone. The world outside, and time as you know it, seem to cease to exist. Everything else ceased to matter. There was only Josiah.

Josh and I were given a tiny room, an old hospital ward converted, in some carer’s accommodation on the hospital grounds. It was a 10-minute walk across to and through the hospital to the NICU. We were incredibly grateful for that room. It meant everything to be close to Josiah. But that room was also depressing. Two single beds, not even the same height, that we pushed together, with single sheets. Windows we could not open. A chair, small table, narrow two-door wardrobe, a bathroom, a TV mounted on the wall, and a shelf above our bed. It was tiny. We had access to a shared kitchen and shared laundry. The only cooking utilities allowed in the kitchen – a kettle, and a microwave. 4 fridges between 18 rooms. And one tiny bar fridge, dedicated to NICU Mums to store their expressed milk. We lived on microwaveable meals for 7 weeks, whether frozen meals, or homecooked meals thanks to the generosity of friends and family that we could simply reheat. We had a basket of breakfast food in our room, we would carry into the kitchen each morning. We struggled to find space in the fridges/freezers for our fresh and frozen food.

People came and went during our time there. Some, parents of NICU babies like us, stayed for weeks or months. Some were there because of a family member’s cancer treatment, or an accident had left a family member in ICU.

Whilst we were grateful, it was a struggle staying there. It was hard on our mental health, living in such a small room.

I wrote in my journal at the time:

“The extent of our world right now exists between our room at the Douglas building and the bridge that connects to the hospital and NICU.”

This was our life for 7 weeks. About 4 weeks in, we started to make the trip home to the Coast, just for a night, every 1-2 weeks. We needed to, we had months ahead (so we thought) and we were going crazy in that room. We would spend the morning with Josiah, then pack up everything (I had to take everything I needed for expressing), drive to the Coast, be at home for the night, and be back at the hospital by lunchtime the next day. We didn’t want to spend any longer away from Josiah.

NICU life is surreal. On one hand, it feels like Groundhog Day, repeating itself over and over. On the other, everything can change in an instant. And you are on alert, 24/7.

Then there were the other parents. Complete strangers who instantly understood. We didn't need to explain ourselves to one another. There was an unspoken bond between us, forged through shared fear, exhaustion, hope and heartbreak.

There was also grief over what was lost. Pregnancy, the last few months together with your husband before bub came along, life as you knew it. Cancelled plans, the loss of work and income in an instant, and a world that still felt innocent and light. NICU life is another existence altogether. It isn’t meant to be like this. Josiah was our light, our son, our joy. But NICU life was damn hard. Tiring. Monotonous. Terrifying. A rollercoaster.

One family's good day can be another family's worst. We saw babies rushed to other hospitals for life saving surgery. We saw families just beds away from us having final cuddles because their little one hadn’t made it. Knowing things can change for you as well at any moment and that each day is a gift. Josh and I would swing between good days and bad days, sometimes without really knowing why. Sometimes that was because Josiah was unwell or had taken a step back, but other days, we just felt flat. Josh would feel flat one day, I would feel flat another day. There wasn’t a specific thing, just a feeling, flat, heavy...this was simply NICU life.

Finding a Rhythm in NICU

We slowly found some sort of rhythm with NICU life. The day would start with me expressing (I was doing this every 3 hours during the day, and 3-4 hours overnight so sleep was limited). Night time expressing was a process. Alarm goes off. Get up. Express. Put the milk into a milk bag or bottle. Walk out of the room down the harshly lit corridor to the kitchen to put your milk in the fridge. Walk back. Rinse everything and put it in the steriliser/drier and wait for that to finish (sterilising was a MUST for a premature baby). Set it all back up again, ready for the next alarm to go off. Repeat.

After breakfast, we would then be over to Josiah’s bedside by 8am to be in attendance for the Doctor’s rounds. This enabled us to keep up to date with how they perceived Josiah was going, any changes to treatment or upcoming tests, and gave us the opportunity to ask questions. After rounds, I would then express again, whilst Josh read to Josiah. We would both spend more time with him, before taking a break for lunch. After lunch, we either spent the afternoon with Josiah, or used some of the time (between expressing) to take a nap, get groceries, or go for a walk. Dinner was in the NICU parents’ room, before final time with Josiah and bedtime stories. As time went on, we added in cuddles to that schedule, but that wasn’t to come for over 2 weeks after Josiah’s birth. There were also visits. We kept a record, and Josiah’s social calendar was in full swing for the time we were there. We could only have either Josh or myself, and one other visitor, at Josiah’s bedside at a time.

I began to keep a journal in the NICU, and Josh created an online spreadsheet (he loves a good spreadsheet!) that would enable us to track Josiah’s progress each day. We shared it with close friends and family so they could jump on and find out what had been happening with Josiah that day. It saved us from constantly trying to remember to update multiple people. If something major was happening, we certainly let people know directly, but having the spreadsheet took a load off, and became a habitual routine to fill it in each day. Now, we have this record forever, Josiah’s story of his life in NICU.

Christmas in the NICU

Christmas looked completely different for us that year. We were meant to be celebrating with Josh’s family, and then spending a few days in Victoria to celebrate with my family. Instead, we woke up in our little tiny room, ready to make our way across to the NICU, like any other day. On Christmas morning, we had prepared a card and small gift of chocolates for the nurses, and of course, had presents for Josiah. We bought him books and wrote little letters inside each one, believing that one day he would read them himself. Christmas Day ended up being far more special than we could have imagined. We walked into Josiah’s room in the NICU, to discover the nurses had decorated everything, even Josiah’s humidicrib. There was a gigantic bag of gifts for us as well, full of goodies for babies and new parents, that had been thoughtfully put together by members of the local community, knowing that the NICU is not where any of us had imagined we would be for Christmas. I cried when I saw it, and even more so when I spotted a handmade Christmas card made by the nurses, sporting Josiah’s handprints. His first ones!

Whilst NICU life is demanding, gruelling, exhausting, and it takes a huge toll on your mental health, it was made lighter by the people. The nurses - our angels, the Doctors, our friends and family who visited, the other parents that you could laugh and cry with, the kindness of community who delivered food hampers to the parents room or carers accommodation, donated books for parents to read to their babies, donated gifts at Christmas, and so much more.

I always thought at the time, I can’t wait to get out of here. As Josh and I sat in our tiny room the day after Josiah died, facing the daunting task of packing up, we just looked at each other, paralysed. We didn’t want to. We agreed we would have lived in that room forever if it meant Josiah could have lived. There are days that I find myself missing NICU. It seems crazy, but it’s there that our boy lived. Our life with him existed amongst the humdrum of machines, wires, Nurses and Doctors.

If you are a parent in NICU – I see you. It’s hard. Take the moments you need. Get some fresh air and sunshine on your face. Find connection with the other parents. Cry whenever you need to. Read to your baby. Know that this is a traumatic experience and don’t let anyone water it down. But also know this: you will survive it, one way or another. It will never leave you. You may never look at a medical monitor the same way again. Your mind, your body, your heart, will take time to come off high alert and to process the experience. One day, when you're ready, take the time to process it. Talk it through, write it out, seek support—whatever works for you. You don’t just have to get over it once you get home. But also know this: you will come out the other side carrying a strength you never knew you had. Not because you wanted to, but because you had to.

Much of Josiah's story is shared in Little Life, Big Loss, a multi-author book launching on 14 July. It is a collection of stories that honour babies gone too soon and the families who continue to carry them forward in love.