When you imagine starting your family, you envision all of the precious cuddles and dressing your baby in the carefully selected going home outfit. Upon leaving the hospital, you get that token social media photo of Daddy carrying the car seat with the most precious of cargo. For some families, these moments are very much longed for, and come a little later than perhaps planned.

Once you have had time to process the reality of a life as a NICU parent, you begin to realise that there are elements of your baby’s care that you can be involved with. For me, these were elements that helped me actually feel more like T’s Mummy. Admittedly, for those first few days, it felt risky to breathe too close to him let alone cuddle him more than once a day. But once we had witnessed how the nurses and doctors handled T, we slowly built up the confidence to be more involved with his day-to-day care.

I had spoken to friends and family about changing the nappy of a boy. How to avoid being showered in wee on a daily basis. I’m not 100% sure, but I don’t think I ever changed a nappy before I had T. I had carefully watched the nurses during T’s nappy changes; they managed to do so without removing him from the incubator, simply using the hand holes on each side. My husband and I each took turns, each keeping a look out for something the other may have missed to make sure we each got it right. After a couple of days, it was a breeze, and we joked how we could handle any nappy once we got home if we could change one through an incubator! To begin with, I was almost asking the nurses if it was ok for me to change T’s nappy, but after a few days, I knew when it needing doing, and I just cracked on with it. It was like we had a sense of normality, even with a small task such as a nappy change.

Feeding T was something that I had thought about before his birth. I had decided that I wanted to try breastfeeding but didn’t want to put too much pressure on myself – way easier said than done! Even though it had been indicated to us that T might need some time in the NICU, it never dawned on me as to what that may mean in terms of feeding. Expressing was to become my main task each day, several times a day. I was double pumping every 2-3 hours, all day, everyday. It was hard work. But I never resented it. It was my contribution to T’s care. He couldn’t actually consume any milk before he was 3 weeks old due to his condition, but we were freezing the milk that I had expressed so that none of it was going to waste – no one wants to waste the liquid gold!

T was 3 weeks old by the time he was able to tube feed regularly. He had tried tube feeding at the beginning, but due to his condition, he wasn’t able to tolerate it. By this point, my husband was back at work, and so I spent my days watching the nurses and learning how to tube feed T myself. Eventually, I would go into the kitchen on the unit, prepare his milk, and then run it through the tube for him. The longer we were there, the more confidence I had to go about doing what T needed to me to do for him. This was also around the time that T discovered the game of “pulling out his feeding tube” – I can’t remember how many he went through. But even thinking back on it now, it makes me smile, as this was our first glimpse of his cheeky personality.

I was very lucky to be able to give breastfeeding a go. It is a privilege to even be given the choice to choose between breastfeeding or bottle feeding – I don’t think everyone appreciates the parents whose babies are actually unable to physically breastfeed. For example, a close friend of mine wasn’t given the option due to her daughter being born with a cleft palette – for those of you who were unaware like me, cleft palette babies do not have the ability to suck, and therefore require specialist feeding. We were fortunate that not only was I able to express well enough to establish my supply, but he and I just clicked, and we were able to fully established breastfeeding in a week. I spent that week learning T’s feeding cues, feeding on demand so that my body was able to adjust to T’s schedule as opposed to my expressing schedule. 

Now, if we had been at home as a family, as normal, self-care wouldn’t have been such an issue. We would have taken it in turns to catch up on sleep when we could, made sure we ate well and have friends and family turn up to tidy up and cook for us. Whilst we were by T’s side everyday he was in the NICU, we also had to make sure that we looked after ourselves in order to be there for him. It’s a tough balance to strike, as you feel guilty for not being by his side constantly, but equally, it’s a difficult environment to be around, and therefore, you do need to give yourself a break every now and then.

Whilst T was a patient at our local hospital, self- care for us, as new parents, was easier to maintain. Friends and family constantly messaging us about needing food and other essential items dropped off to us – its true what they say, you find out who your real friends are in a crisis. We were typically with T from 9am-7.30pm everyday. We would take a break after ward rounds; grab breakfast in the hospital canteen around 10am each day, followed by lunch around 1.30pm. We would usually have a visitor or two from 3-5pm as well. It was always good for us to see a friendly face and to have someone else to talk to, as at times, it could be a slightly isolating experience. 

When T was transferred to Great Ormond Street Hospital, the support remained, but mostly via our phones. We were fortunate that my in laws worked part time and so one of them would travel to London each day to be with us as extra support. And it was needed; it was a lot more intense being at GOSH. We were away from home, away from our support network and anxiously waiting on when T might have his surgery. We had our breakfast and lunch at the canteen in the hospital. But each evening, we made a point of walking to an actual restaurant to have a change of scenery. It allowed us to relax enough to enjoy a meal together, even if it was only for an hour or so. Did I feel guilty for doing it? Yes. Should I have done? No. It is so important when you’re in such a scenario to take time to look after yourself. We would have been useless to T had we not taken a couple of hours out each day to look after ourselves. We had to prioritise ourselves as well as T, in order to be at our best, for him.

There are many adjustments that you have to make when you’re thrusted into the NICU world. The way in which you care for your baby is different, but you are still able to participate in their care. I did feel, for the first few days, that I had lost my identity as T’s Mummy, but once I got into the swing of the expressing and nappy changes, that negativity soon fell away. For those who are going through your own NICU experience right now, don’t feel guilty for taking time out for you. Its essential for your sanity. It can be a highly stressful environment at times, and it does have an impact on your mental health. To be the best version of yourself for your NICU baby, you need to remember that you’re allowed to put yourself first at times too.