Dear Toby: A Dad's view from NICU

I was an ill-prepared and frightened father. My wife and I were thrown into the parent pool at the neonatal deep end.

Nothing prepares you for that.

I found myself standing beside an incubator, completely out of my depth. I was too terrified to look at my own son for the first couple of days. That’s not a joke. That’s the truth.

Present but powerless

I’d barely glanced at Toby. On our first meeting, it felt like I was staring at a film prop. I told myself all sorts of things. Maybe it was the lighting. Maybe it was my emotional state. Maybe I hadn’t seen him properly. But when I finally looked, really looked, he still didn’t look real.

He was no longer than my hand, smaller than an Action Man figurine. His skin was translucent, almost papery, with veins branching like rivers beneath the surface. I could see his heart beating inside his chest, faster than I could count. Every rib visible. Every part of him connected to wires and machines.

It was other-worldly.

I didn’t feel what I thought I was supposed to feel. I didn’t have that immediate urge to love him and pick him up. I was too scared. How could I hold something so fragile without breaking him? How could I fall in love with something I was too scared to touch, let alone hold?

So I stood there, present but powerless.

That feeling followed me through those early days. You are there every day, but you are not in control. You can’t fix things. You can’t take it away. You are watching your child fight battles you don’t fully understand, surrounded by people who speak a language you are still trying to learn. Some of the terminology used in neonatal units is confusing, and some of the medication sounded like spells taught at Hogwarts.

Writing to order

I felt helpless. So I started writing.

I began writing to Toby as a way to organise my thoughts, to create some kind of emotional outlet, and to make sure I didn’t forget what was happening to us. It wasn’t written with any grand plan. It was survival. A way of coping when everything felt out of control.

Over time, it became something more. Something honest. Something that didn’t shy away from how hard it really is, but also didn’t lose sight of the moments that get you through.

Because even in NICU, there are moments. Sometimes, it’s the smallest things. A stable reading. A tiny gain in weight. A quiet hour where nothing goes wrong. You learn to cling to those. You celebrate things you never imagined you would.

And sometimes, it’s something unexpected, like laughter.

Coping mechanisms

I remember sitting in the parents’ room with Phil, another dad whose daughter was going through her own fight. We shared a very dark sense of humour. To anyone outside that room, it might have sounded inappropriate. But in there, it made perfect sense.

Dark humour becomes a coping mechanism. It cuts through the fear, even if just for a moment. It reminds you that you are still human in a place that can feel anything but.

Toby had a dramatic time in hospital. He suffered brain bleeds, was resuscitated on multiple occasions, had 11 blood transfusions and four lumbar punctures. When he became seriously ill with necrotising enterocolitis (NEC) and needed surgery, it was the most frightened I have ever been. I remember sitting there, trying to rest but unable to switch off, my mind racing through every possible outcome.

Every baby’s situation is different. In Toby’s case, we were told how serious it was, and that fear was overwhelming.

I remember feeling angry at myself for letting fear get in the way of how I thought I should feel as a dad. It’s something that stays with you. But so does everything else.

The strength of these tiny babies. The care of the people around them. The quiet moments of hope that slowly begin to grow.

Toby spent 142 days in hospital. Today, he is doing really well, and that is something I never take for granted.

Take two

We also went through NICU a second time with our daughter Ruby, who was born at 29 weeks. It was a very different experience. We felt more prepared, and although there were still challenges, it was a much smoother journey. She had sepsis once, but overall her time was far less complicated. She is doing amazingly well now, and we will always be grateful for the care and love shown by the neonatal teams who looked after her.

Writing everything down during Toby’s journey helped me make sense of it all. It helped me process what we were going through and, in time, gave me something I could share with others who might be standing where I once stood, feeling just as lost.

That’s why I turned those words into a book, Dear Toby.

If it can help even one parent feel less alone, especially one dad who is trying to be strong while quietly falling apart inside, then it has done what I hoped it would.

Because that’s the truth of it.

You can feel completely alone in a room full of people.

But you’re not.

I want to send love and strength to all those on their own neonatal journey.

Thanks to Adam for sharing Toby’s story. Buy Dear Toby: The Diary of a preemie parent or listen to the audiobook.