112 Days That Changed Us Forever

We have had two premature babies, born just over three years apart. Although both of our boys arrived far earlier than we ever expected, their journeys into the world were completely different.

Our first son was born at 32+3 weeks, weighing 1,459g, after I developed sudden, severe pre-eclampsia. One minute, everything felt normal, then suddenly, it wasn’t. There was no time to prepare ourselves for what was coming. No time to imagine what NICU would be like. We went from expecting a normal pregnancy and a normal birth to having a tiny baby who needed to be cared for by a team of people while we stood beside him, completely overwhelmed. 

He spent 43 days in hospital between NICU and SCBU. Thankfully, his time in NICU was relatively straightforward. He needed CPAP for his first five days, and after that, his biggest job was simply learning to feed, grow and get strong enough to come home.

But even when your baby is doing well, NICU is still incredibly hard because nobody can prepare you for what it feels like to give birth and then leave the hospital without your baby. You can hear other babies crying, see other families going home, then here you are, walking out without your baby who is still in the hospital, and you’re expected to somehow go home and sleep without them. Sobbing in the car the first time you have to leave your baby behind. 

I don’t think you ever forget that feeling. The constant checking of your phone. The drive to the hospital. Then the drive home again. The guilt when you weren’t there. Then fear when you were. The desperate wish that you could somehow take away everything your baby was going through. 

We just wanted our little boy home & eventually, after 43 days, he was.

We thought that was the end of our experience with prematurity & we never imagined we’d do it all again. 

Just over three years later, I became pregnant again. This time, we knew a little more. We knew what it was like to be a NICU parent. We knew how tiny babies could be. We knew that premature babies could be incredibly strong. But we hoped desperately, that this time would be different. 

Unfortunately, there were complications early on. Our baby was measuring small & at 18 weeks, I had a significant bleed from a partial placental abruption. 

Then, at 27 weeks, my waters broke and suddenly, I was admitted to hospital over Christmas. Once again, we were living in a world of uncertainty. Every extra day our baby stayed inside was a victory. We were constantly wondering if today was the day, will he be ok, how long can I keep him inside safely? 

And while all of this was happening, I had another little boy at home. My first baby. The little boy who had once been the tiny baby we had worried about. 

Being 45 minutes away from home in hospital over Christmas was one of the hardest things I’ve ever experienced as I wasn’t just worried about the tiny baby growing inside me, I was also missing my little boy at home. I felt torn between two babies – one who needed me to stay in hospital and one who needed his mum at home. 

I managed to stay pregnant until 29+4 weeks & then our second son arrived weighing just 993g. Our tiny, tiny boy. This time, I knew what NICU looked like, but knowing didn’t make it easier. In some ways, it made it harder, because this time, I understood. 

I understood the numbers on the monitors, what the alarms meant, what CPAP was, apnoea’s, what could happen and how quickly things could change.  

Our second son spent 69 days in hospital – 43 days in NICU and the remainder in SCBU.

 He needed CPAP. Sometimes it would come down, then sometimes it had to go back up. He progressed onto high-flow oxygen. He needed a blood transfusion. He struggled to come off caffeine because of repeated apnoea’s. And there were so many times he stopped breathing that we genuinely lost count.

We would sit beside his incubator and watch the monitor. Watching his heart rate drop. Watching the numbers fall. The alarms would sound, nurses would rush over and our hearts would stop. 

There is a very particular kind of fear that comes from watching your baby stop breathing. You know the nurses are there & trained. You know they have done this countless times, but none of that stops you from feeling absolutely terrified because that’s your baby, your whole world lying inside that incubator & all you can do is stand there and watch, wishing you could trade places with him and having to trust that the professionals know what they’re doing.  

But then there were the tiny victories. The moments that probably wouldn’t mean much to anyone else. A lower oxygen setting, 1ml more of milk, a few grams gained, an IV line being removed, a day without an apnoea. One step closer to home.

We celebrated things we never knew we’d have to celebrate and we learned that progress isn’t always big, sometimes progress is so tiny that nobody else can see it.

After going through prematurity once before, I thought I knew what NICU would be like. I didn’t. I knew the machines, the terminology, that one day we would be able to take our baby home.

But I didn’t know what it would feel like to go through it again, what it would feel like to be terrified for one child while missing another. Leaving one baby in hospital while going home to another. Living in a constant state of fear & hope, feeling like you wish you could split yourself in half and give everything to both children at once so neither was missing out on time with Mum.  

Looking back now, we have two boys who both started life in neonatal care.

Two pregnancies that were completely different. Two tiny babies. Two very different battles. 

Between them, we’ve spent 112 days in NICU and SCBU.

112 days of hospital corridors.

112 days of monitors and alarms.

112 days of leaving our babies behind.

112 days of wishing we could make everything okay.

112 days of counting down until we could finally take them home.

There are memories from those months that will stay with us forever. Some are painful. Some are frightening. Some still make my heart ache. 

But there are also memories filled with incredible love. The nurses who cared for our boys as if they were their own. The first time we were able to hold them. The first time we saw them without their CPAP mask on. The first time we realised they were getting stronger. And finally… the day we got to take them home.

Having been through this twice, I know how frightening and isolating those first days can feel. Sitting beside an incubator having no idea how you’re ever going to get through this. I know what it’s like to leave the hospital with tears in your eyes because you have to say goodbye to your baby yet again. 

So, if you’re reading this while sitting beside your tiny baby, wondering how you’re going to survive another day…

 You don’t have to survive the whole journey today. Just get through today. 

One hour. One feed. One breath. One tiny milestone at a time. 

And if nobody has told you lately: You’re doing an incredible job. Your baby doesn’t need you to be fearless. They just need you to keep showing up. And you will, because somehow, through all the fear, exhaustion and heartbreak, love keeps you going.

Our boys started life incredibly small. But they taught us that strength has nothing to do with size. They are the strongest, most resilient people I know. They taught us that sometimes the smallest people can leave the biggest mark on your heart.

We are forever in awe of our little fighters & the journey they had to go through to come home.