The realities of being a NICU Parent

Back in 2017, Sam and her husband welcomed their first child. Their pregnancy was full of anxiety because they knew that their son would be born with two lesions on his lungs. Sam was induced at 39 weeks and this is her story of having a baby who was cared for in NICU.

The Birth

Much to our surprise, not only did our son come out breathing, but he was even crying! I remember feeling so relieved in the moment. We enjoyed a couple of minutes of skin-to-skin before he was put in the cot and the midwives checked him over. 

It wasn’t long until the NICU team arrived to take him to the Neonatal intensive care unit (NICU) – something we knew would be happening regardless. My husband and I had decided before our son was born that he would go wherever the baby went, so the baby was never alone. So all of a sudden, I went from a full room of midwives, doctors, my husband and baby, to being totally alone. My midwife kept popping in to check on me, of course, and provided me with the famous post-delivery toast. But for the most of this time post-delivery, I was alone. 

My husband came back about 90 minutes later with the NICU doctor, who told me that not all was well. Our son wasn’t able to breathe unaided, and they would need to perform further tests and scans in order to find out the true extent of the lesions. It was around 4 hours after giving birth that I was able to cast my eyes on my boy again, and a long 24 hours before I was able to hold him properly. This is the case for many NICU parents. Some wait for hours, days, or weeks to hold their babies.

The early days

I was discharged 24 hours after giving birth. I was so keen to go home, but it never dawned on me that I would be leaving our son behind. It wasn’t until I was in the car, and I saw the empty car seat, that it hit me. I understood that it’s something that we had to do, but I was devastated, nonetheless. You have to leave behind your newborn baby with people you’re forced to trust immediately because you haven’t had the time to get to know the staff.

Arriving home was another big reminded of the situation that we had found ourselves in. It was silent for starters – not what you expect your home to sound like having had a baby. The moses basket was by our bedside, and very quickly moved into the nursery, with the door shut firmly behind us. 

Settling into NICU life

My husband and I quickly got into a routine each day. We would arrive at the hospital each day before the doctors did their rounds, so that we could be updated on our son’s condition and ask any questions that we had that day. We began to familiarise ourselves with the unit itself, getting to know the staff and our son’s routine for the day. I struggled to feel like a mummy straight away.

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It wasn’t until I plucked up the confidence to get involved with our son’s care and have our daily cuddles, that I felt part of the motherhood gang. This isn’t something that all parents can do from the get-go, it depends purely on their baby’s condition and circumstances.

Great Ormond Street Hospital

The plan was to wait for a bed on Great Ormond Street Hospital’s (GOSH) NICU and head down there by ambulance transfer. In reality, our son took a turn on day 9 and our local hospital said he couldn’t wait any longer. We were rushed down to GOSH on a blue light transfer in the middle of the night. It was incredibly daunting, arriving and not knowing the hospital, the unit, the surroundings, or where we would sleep. But the staff were brilliant and they answered all our questions before we could even ask them. 

The reason we needed to go down to GOSH was because they had the surgeon that was able to take on our baby’s case. Surgeons at our local hospital, admirably, held their hands up and said that they weren’t right for the job as our son’s condition wasn’t one that they were familiar with due to its rarity. We had total respect for them for that. Our son had his surgery at 19 days old, after fighting off two infections. The surgeon removed one of the lesions, making the decision to leave the other based on what he could see during the surgery.

We had a few more days at GOSH post-surgery and, amazingly, our baby boy recovered well and we were transferred back to our local hospital, without the blue lights. The relief that we felt was huge. We still had a way to go, but we knew that our time to take our baby home was coming.

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Establishing Breastfeeding

Once we were settled back into our local hospital, the team said that we needed to establish breastfeeding for our baby to gain weight. I had hoped to breastfeed, so I had been expressing ever since he was born. Expressing is hard work and relentless. But, for me, I felt that it was my way of contributing towards my son’s care. I was fortunate that I was able to bring in my milk this way and express the amounts that my son needed. There was a worry that expressing may not work for me, as it isn’t for everyone, and I have since spoken to a few women who found it really difficult. I was incredibly fortunate. 

The first time that my son and I gave breastfeeding a go was, coincidently, Mother’s Day. My first ever Mother’s Day. I couldn’t think of a better day to give it a go. Things didn’t happen overnight and we had to work together to establish breastfeeding. But fortunately, it worked well for us both. We spent a week getting into our own routine, which meant I was spending more time with him, not having to run off and express every 2-3 hours. My husband and I also spent a couple of nights on the unit with our son, to ensure we had established feeding overnight.

Homeward Bound

On day 31, we were given the magical news that it was our turn to take our boy home. It was something that we had longed for and couldn’t quite believe it. I was buzzing with excitement but was also full of anxiety. We couldn’t leave with the medical team. We would be on our own, with our baby. We had removed the last of the monitors during our family sleepover on the unit. He no longer needed them. This was a big step for my husband and a lot for us to process.

Arriving home was very strange. I almost felt like we had kidnapped him! It was lovely to be able to show him around his new home and see him lying in his moses basket next to us. This is all we ever wanted, and though it took longer to bring him home, it was worth the wait.

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Walking out of those double doors that we walked through every day, but this time with our son. It was pure magic. 

The Aftermath

While we were settling into life at home together, I found there were a lot of unresolved feelings about our experience. I just had to see a blue lit ambulance and would find myself in floods of tears. Tiny little things would upset me and I found myself often feeling overwhelmed. It was around our son’s first birthday that I really noticed that I wasn’t myself. I spent the whole month of his birthday remembering exactly what had happened on that day, the year before. It wasn’t healthy. Over time, it has become easier to live through the month of March. 

Having a child in the NICU was the hardest experience of my life so far. It made me feel angry, sad, frustrated, devastated, to name but a few feelings that I encountered during that emotional rollercoaster. It took me a while to realise that these feelings were all valid. Being on the NICU is emotionally and physically challenging.

My son is almost 4 now and we continue to be proud of him every day. He couldn’t be more excited to start school in September and is obsessed with golf! He is a very active child and, so far, the lesion on his lung that he’s been living with all this time, hasn’t slowed him down in any way. That’s all we could ask for. We welcomed our second son last April, and it was strange to be discharged at the same time as my baby, just 17 hours after giving birth. We really cherished spending those newborn days at home, together as a family.

You can follow Sam on instagram @the_nicu_mummy