“Every NICU journey is unique but never easy” - Jack’s story #ByYourSide

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Jack’s twin boys were born at 32 weeks. For World Prematurity Day, he offers his advice to parents going through a neonatal experience and opens up about how it has affected him.

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Click the 'play' button to hear Jack's story in his own words

Our story begins last August, we were just over 32 weeks through our pregnancy and our expected twins were what was known as Monochorionic-diamniotic or MCDA twins, the product of a single fertilised egg, resulting in genetically identical babies. MCDA twins are fairly rare and can have a number of problems during pregnancy so we were considered high risk.

Every couple of weeks, we would pop into Lister Hospital to have the boys measured and scanned, testing the placenta's efficiency. Our first born, Ruben (almost two at the time), was born during lockdown in 2020, so I had not been able to attend his scans (apart from listening via the phone).

However for the twins, I cannot describe the scans more than just being mentally draining. In my mind, I had pictured these moments as being quite wholesome, full of laughter, maybe a joke about "twin one doing a dance" and "sitting on top of his brother", but these bi-weekly scans were quite solemn and serious, conducted in almost silence apart from the sounds of the equipment.

The twins were always measuring on the small side due to the placenta supporting both of them, but at 26 weeks we found that the boys' growth trajectory had started to flatten. We were now to have weekly monitoring - it was best to keep them in as long as possible, but the doctors had to make sure their growth didn't start to falter.

Basically, they were looking for the moment it became safer for them to come out vs staying in. As identical twins, we had been advised that 36 weeks was the latest they could be delivered, but it now seemed that even that would be too far to reach. Each week was a battle to hear the words, "we shall see you next week". On week 32, we didn't hear those assurances.

The numbers were checked and re-checked before we were informed that they needed to come out in the next few hours. You can try and mentally prepare for those moments, but when it happens, it's a bit like a dizzying out-of-body experience as you try to grapple with reality. We had expected at least a few days' notice. Jen, my wife, wouldn't even be able to even go home first, no hospital bag with her, not able to explain why she wouldn't be home to put our eldest to bed. Everything was thrown into disarray. Desperate calls to parents were made to sort logistics as Jen donned a surgical gown and was put onto a magnesium sulphate drip.

The morning itself went at an extreme pace, the panic slowly subsided with the reassurance of the midwives and doctors and we caught up and digested what was happening. 5pm came and went, as babies with even higher risk went to be delivered and after a couple of abandoned attempts. At 3am it was our turn.

The staff at the Lister were complete professionals. The operating theatre was so calm, so ambient in comparison to the chaos in the hours prior. The team put us at complete ease. Twin one was going to come first, slowly and calmly he arrived, kicking his tiny little legs with all the energy he could muster. "He's a wriggler!" grinned the midwife. Within three minutes, Twin two had arrived to a raucous roar of crying. We had our two names lined up for several weeks now, not knowing which name to give to each baby, but from that point it became clear, we had "Remy Wriggler" and "Loud Luca", both born at 3lbs.

We had prepared ourselves for the prospect of a NICU stay. One piece of advice that my wife passes on to expecting twin / preterm parents is to familiarise yourself with the unit, having a cup of tea with some of the staff and having a guided tour around. We had done just that, knowing that they were always likely to stay for a while. Prior to expecting twins, I knew nothing about NICU, let alone that 90,000 (1 in 7) babies end up there every year.

A visit there is much more common than you may think. According to a survey conducted by Bliss, only 15% of respondents felt they had a good understanding of what a NICU was and what it does. The same survey found that 60% of respondents had never heard of a NICU before. This doesn't give the average parent a good starting point if you were to end up there.

Fortunately or unfortunately, we had come prepared. Our babies were lucky not to need much intervention, but they needed to grow a fair amount before they could come home. What you will never be prepared for is to say goodbye to your babies each night, leaving them with people you don't really know, having to go home and seeing their little cots all set up, but knowing how lucky you are that they are alive.

There is a bit of guilt here that is hard to put into words. You are so relieved, grateful, thankful that your children have been born safely unlike so many others that pass through the NICU doors, but why is it unfair that they are not able to come home with us? At home, Jen's alarm would go off every three hours, scrambling together the breast pump as she would sit and express milk for babies that were not there. It was heart-breaking to see, madly we were craving the hungry newborn cries in the middle of the night!

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Any NICU stay is hard, no matter the duration. The effects of a NICU stay on parents can last a little while and this is a really important factor to grasp, especially if you are reading this as family or friends of someone going through this experience, it doesn't just go when you pass back through the doors with your babies, there are scars and there is healing time required.

Quite honestly, I still find myself getting tearful quite a lot, despite being a year later when talking to friends, when certain songs play on the radio that take me back to this time, or even references to NICU on the news, something I really didn't expect all those months ago. I am clearly still holding a lot of baggage relating to it and it does still weigh heavy, despite the boys doing well, it's quite hard to explain. The image of my tiny boys, no bigger than my hand, in an incubator, tied up in so many wires, will always hurt. I doubt that pain will ever really go away, and I still think about it daily.

In terms of advice, there were a few things that helped me on the NICU journey. Firstly, absorbing as many NICU stories as possible could really reduce my anxiety. Instagram - it sounds a bit crazy as social media gets a bad rep, but I followed 20-30 different accounts, focused on NICU, twins, or preemies, and spoke to parents. Filling my feed with parents in a similar situation really normalised things, it showed that their baby's lives are not dictated or defined by a start at NICU and nor should it be.

I would also sincerely advise not to go into a Google hole. Don't read medical journals, don't go searching for possible conditions your baby could/might develop. I did this and quite frankly what I read just wound me up and was not actually applicable or relevant to our situation. If you have questions, don't try to answer them yourself - speak to a medical professional, that's what they are there for!

Make sure you are communicating with the medical teams - maintaining open and regular communication with the NICU staff put myself and Jen at ease, and being able to be involved in our twin's day to day care really helped with the bonding experience. It also really educated us in the NICU medical procedures and the babies' conditions and that knowledge felt like an element of control, something that you are all too aware is lacking in the entire NICU experience.

The next piece of advice, take care of yourself and your partner. It is easy to forget to eat, rest, stay hydrated, it's so important that both of you are physically and emotionally well to support your baby. In some ways, it was doubly important for me to focus on Jen and our eldest Ru, especially as her mind was so set on getting the babies better and home. Mothers are incredible humans, they will always put their kids first, so make sure you are there for them. Remain optimistic, but realistic. As the partner, I think it is important to try and remain strong when you can. Hope for the best, but remain aware that setbacks can happen.

As a father or partner, the challenges can be slightly different. Studies have shown the effects from NICU can develop much later in men. This could be down to society expecting men to put on a brave face, but then feeling 'allowed' to fall apart when the immediate problems have resolved. Try to be wary of this, make sure you are talking to your partner or a friend about how you feel, as it can be a big burden to shoulder by yourself. If you are reading this as a mother, do check in with your partner regularly. My wife also thinks that NICU staff tend to default to the mum being the one to hold and care for the baby/ies so make sure you make it known that you want to be an equal part (wherever possible) of caregiving.

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Work is something that needs to be finely balanced too. I continued to work through this period, saving my paternity leave for when the babies came home. This was tough - at the time, there was no additional support in terms of statutory paid leave for NICU parents. However, thanks to campaigning from Bliss, it was announced that mothers and fathers would be able to claim statutory paid leave for every week their child is in neonatal care, for a period of up to 12 weeks, which will be a massive relief.

Seeking support from friends and family is so important at this time. Even if it's some food dropped off, or a friendly cuppa, it is all worth it. Personally, I felt that I couldn't talk to anyone outside of Jen about my experiences in NICU - this is one of the reasons for writing this article, because I felt like it was not something non-NICU parents would necessarily understand. I found myself triggered by a lot of comments, comments about how "small" and "tiny" they were, or comments such as "at least you can get some sleep".

I resented those that did not check in to see how the boys or Jen were, some of my best friends, perhaps they didn't know what to say. I shut myself away from friends as a result, which I don't think is necessarily the right course of action. It is important to stay grounded, and try to remain objective on some of these comments, as nobody really means any harm. Just do your best not to let it get to you and let them in. This is one of the reasons NICU awareness month means so much to me.

The next key is patience. NICU stays can be lengthy, so it's good to be prepared for a long stay as progress can be slow, but at the same time, be sure to celebrate all the milestones, however small. We did just that: when we got to change their nappies for the first time, when the jaundice light came off, the first cuddle, the first time they were in the same cot together, the first breast feed, whatever it may be, make sure to celebrate it! As a dad, especially as a first time father, do make sure you try to bond with your little one. Spend time with your babies in the NICU, even if it's just holding their hands. Have little chats with them, familiarise them with your voice and of course, skin-to-skin is so beneficial for both of you.

It is always good to try and establish a routine when at NICU too. Balancing time with the rest of the family, work or whatever it can be will feel tiresome. Trying to keep that balance can also lead to increased levels of guilt of not being there with them. Establishing a routine allows you to plan for this, and also can help you feel more in control.

Trying to get the balance right between spending time with Ru and the twins was something we were very wary of. As a soon-to-be two year old, it was very difficult for Ru to comprehend not only that he now had two new brothers but also that they 'lived in the hospital' (his words not ours). We chose to keep Ru away for the first few weeks whilst the twins graduated from the incubators and brought him in to meet Remy and Luca when they were 'wireless', just in case any images could be upsetting.

The moment they met was one of the most beautiful I think I will ever experience in my life. We made sure the weeks when the twins were in hospital we kept Ru very busy with lots of days out, but also trying to keep an element of normality in his life. It was very rare that myself and Jen were both in NICU together, we took it in shifts so that there was always one of us available for Ru.

Remy and Luca came home after a month at the Lister NICU at Stevenage. The staff there were quite simply incredible. They were caring, understanding, informative, gentle and really took good care of our little lads.

These people kept our children alive and cleaned, fed, and supported them through the hardest, most vulnerable period of their lives and for that, I will be eternally grateful.

From the 0.3% percentile, the boys have since grown to almost the 30th now in just a year - they are such smiley, happy, bouncing lads, and along with our Ruben, really complete our little family. The NICU journey will always stay with us, but it is important to remember, every NICU journey is unique but never easy. It's normal to have an array of emotions, before, during and after your stay, but these babies are brave and wonderful.

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