Surviving the NICU rollercoaster…

“NICU is an emotional rollercoaster. You must be prepared for ups and downs; good days and bad.”

Pretty much all preemie parents will get told this at some point during their NICU experience.

We were told this very thing on our first night in London. We arrived at the Evelina Children’s Hospital at around 7pm on the 27th May 2017 – Noah had been born at midnight that day and had been blue lighted down to London from our local hospital, while Liam and I followed on a train.

Within an hour of our arrival, we were taken into a side room to meet a neonatal consultant and a cardiologist. They sat us down and explained to us that, realistically, the future for Noah was unknown. They would, obviously, do their absolute best for him, but ultimately, it was down to Noah to fight – and he had a big battle ahead of him.

Premature babies born before 30 weeks are incredibly vulnerable. Their lungs haven’t developed properly at this gestation so they will need help with their breathing; their immune systems are weak and they are very susceptible to infection.

Cardiac babies are also very vulnerable – their heart is working harder to pump blood around the body and because of this, organs such as the stomach and gut can suffer, and they too are very prone to infections which they will find much more difficult to fight.

Noah was a 28-weeker and a cardiac baby which meant the risks for him were even higher. The next 24 hours were going to be critical.

How did you get through it? How were you so strong?

I’ve been asked these questions a lot – both during our extended NICU stay by other NICU parents; and since we were discharged.

I have no idea how to answer those questions with anything even remotely useful.

The truth is, I did it all on autopilot. Every single one of those 176 days.

It’s actually a really peculiar feeling. Those days are etched on my mind and the phrase “scarred for life” (without sounding dramatic), couldn’t be more fitting. I will never forget the smell of the unit. The feeling of my hands after they’d been washed umpteen times and then soaked in antibacterial gel. The panic that set in when the phone started ringing from a withheld number in the middle of the night. The sound of the alarms. The flashing of the lights. The squares of the charts that recorded Noah’s vitals every single hour. His hospital number that I’d write out 7 or 8 times a day on every bottle of expressed milk. The feeling of weigh-in day – desperately hoping he’d gained 5 grams since the last weigh in. The numbers on the monitors; the blood gas reports; the pumps counting down the time left on his transfusions and the syringes of medicine and sugar water that were pumped into his tiny body through the long line in his left foot. And of course the heartbreak of saying good night every single night and leaving the hospital without him.

Yet weirdly, as prominent as the whole thing is now…at the time it was a complete blur.

Noah’s first 24 hours seemed to pass without incident. The nurses in London stabilised him after his ambulance journey and hooked him up to their own pumps and machines. He was heavily sedated and muscle relaxed to allow his body to rest. “Critically stable” – that’s what they said. At every ward round for the next 5 days, that’s all we were told. “Noah is a complex baby. He’s been born premature with a heart condition. He needs to grow to be able to have his operation (he needed to be 2.5kg for his first heart operation and was currently 1.12kg). At the moment he is critically stable which is the best we can hope for.”

Strangely, this gave us a false hope. We’d been told to expect ups and downs, yet 5-6 days had passed and nothing had really changed.

That is, until Friday 2nd June when the phone rang at 5am. “No caller ID”.

The doctor calling told us that Noah had had a rough night and it would be good for us to get in early that morning so that we could speak to the consultant. We were always in by 8am anyway but we knew that we needed to get to the hospital earlier – we needed to get there as soon as possible. When we arrived in NICU the consultant explained to us that Noah had suffered a pulmonary haemorrhage – a life-threatening complication. He’d actually improved slightly by the time we arrived but he looked desperately poorly. If this was “better”, I’m so thankful that I didn’t have to see him at his worst. His skin was bright red because he’d been given platelets and a blood transfusion during the night. His ventilation had been increased to a high frequency oscillator with more oxygen support and his little body literally vibrated inside the incubator. He was on antibiotics and was nil by mouth. I felt numb. I tried to call my parents to let them know the latest news but had to hang up twice because I couldn’t talk – I was sobbing and could barely breathe.

Amazingly, Noah continued to battle through to the surprise of the consultants and doctors. I don’t think they expected him to survive but somehow he did, and by Wednesday, it seemed like he was starting to get stronger. His ventilation was reduced back to its settings from day 1, he was no longer on antibiotics and his milk had been reintroduced.

A NICU Rollercoaster. This term now made sense. Noah had been stable. He’d then dropped dramatically and he was now on his way back up.

2 days later, the following Friday, the phone rang again during the night. It was the same doctor who rang us last week. My heart was pounding.

Noah had had another awful night, and this time, the concern was his gut. His tummy was swollen and a strange colour; his infection markers were high. The neonatal team suspected he had a condition called Necrotising enterocolitis (NEC) – a very serious, yet very common infection in premature babies. When we arrived at the hospital, the consultant sat us down and said that the gastro surgeons were on their way to NICU to assess Noah. They were already treating Noah for NEC with a strong course of antibiotics but felt that he may need surgery to overcome this infection. However he was far too frail for surgery and they didn’t think he would survive it – his body was still recovering from the pulmonary haemorrhage from the previous week and his ventilation settings were far too high to support him in surgery. I burst into tears. I couldn’t understand how he could change so much – he’d been so “stable” less than 12 hours ago, so how were we now facing a possible surgery with pretty much no chance of survival?!

The surgeons confirmed that surgery was definitely not an option for Noah. They would come and see him again over the weekend, but for now, we’d just need to see how his body responded to the antibiotics. All we could do was sit, wait and watch. Liam and I both felt so so helpless. We couldn’t hold our little boy because he was too poorly (it was day 14 and we still hadn’t even seen him outside of his incubator, let alone held him). We couldn’t kiss him. All we could do is put our hands in through the tiny doors of the incubator and hold his little bruised hand. We told him how proud Mummy and Daddy were. We told him how lovely our house was and how we couldn’t wait to take him home and show him everything. We said we were sorry that we hadn’t bought him anything but that when he was home, he could have everything and anything he wanted. And we played him Ed Sheeran – I’d listened to the album Divide on repeat during my pregnancy so we played it quietly through his incubator wondering if he would recognise it.

How do you get through situations like this? I don’t actually know, but somehow, we did.

Days passed, and we quickly established a routine that worked for us…it required very little thought. We woke up, I pumped, we showered and got dressed. We were staying in a Ronald McDonald House, a stones throw away from the hospital – just a short walk across a park. We walked the same route each morning and went through the same door in the hospital at 8am. We waited for the lift (and complained about how useless they were every single day – there were 6 lifts and one was always out of order). We went to the 6th floor and pressed the buzzer for NICU. We said hello to the receptionist and signed ourselves in. We washed our hands and coated them in antibacterial gel, then turned right down the corridor to NICU room 2, heading to bed space 1. Every day we panicked in case there were people crowding Noah’s incubator. We spoke to the nurse, asked how his night had been and then I went off to pump again. Then our daily routine with Noah would begin. We made sure we were around for ward round every morning so that we could have a comprehensive update from the consultant. We did his cares (changing his nappy; wiping his eyes with sterile water and cotton wool; and putting a little bit of milk on a cotton bud to clean his mouth). When he was allowed milk, we tube fed him (it was 2ml every 3 hours for ages….!) and we took his temperature every 3 hours. I went off to pump every 2-3 hours. To us, this was parenthood – we knew no different. We would spend 12-14 hours by Noah’s bedside before dragging ourselves away from him at night to get some sleep before we did the whole thing again the next day.

I really struggled to sleep. I guess any new mum struggles as they adapt to their new routine with their newborn – the sleepless nights – waking up to the cry of their baby wanting to feed. I was no different – I woke up to my newborn too, only he wasn’t there with me, so I’d ring the NICU to see if he was ok before trying to go back to sleep.

Despite being sleep deprived and scared beyond belief, we still tried to stay positive. After those first 14 days, we learnt how strong our little boy was – so we needed to be strong too. He didn’t look like he was going to give up just yet, so we needed to believe in him. Negative energy was not what the doctor ordered right now. So we smiled at every opportunity – the word “stable” was music to our ears. We looked for the positive in everything we could. We got to know the nurses – we were 100 miles away from home, so they became like a second family to us. We asked questions of the consultants (loads of questions!!) and we weren’t afraid to have an opinion. As we learnt more terminology, we became slightly less scared – having knowledge felt powerful and it was good to understand Noah that little bit more.

The hardest part was letting go and taking some time for us. The nurses told us time and time again to go out for the day and make the most of being in London – they said they were like a really expensive babysitter! They assured us they would call us if anything changed – which we completely trusted. But, how could we just leave Noah?!

I didn’t understand why they were saying this to me – I remember saying to one of our lovely nurses after she’d suggested we go out for the day “if Noah was a normal baby and I’d taken him home like a normal mum, it wouldn’t be suggested to me when he was a few weeks old that I just leave him and go off on a jolly around London for the day, so why would I do that now?”  I don’t think we realised at the time how much stress we were under, because like I’ve said, at the time, our dire situation was just one massive blur and it had become our new normal. Looking back now, I can see why they said this. NICU nurses are incredible people they take excellent care of our poorly babies during their 13 hour shift; but they also genuinely do care for the parents too. They know that a sick baby needs their parent at its best, so taking time out is a good thing. Fresh air outside of the four hospital walls is medicine in itself.

I’m not going to lie – it didn’t get any easier. But we said to ourselves that if Noah had the strength to keep going, then we would too. And we did.

I will never ever forget the first 176 days of Noah’s life. I hate that we had to spend them how we did, but I am so ridiculously proud at how far he has come, from that frail little boy during the first few weeks. It may be taking him a little longer to reach some of his milestones, but when he does get there, I know they’ll feel like even more of an achievement.

To a new NICU parent – you will get through this. Whether you spend a day, a week or months in NICU, it will be tough and it will have its ups and downs but you can do this, and you will. You may question why it’s happening to you and whether or not you can handle it. You will be frustrated that your newborn’s days are spent like this. And it’s ok to feel like this.

But as Bob Marley said “You never know how strong you are, until being strong is your only choice.”

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