After a month in hospital, we were finally at home, all three of us. I remember we had endless cuddles on the sofa each day. He napped on me A LOT. I had to remember to put him down at times to do necessary tasks like eat and nappy changes. I just wanted him in my arms as much as possible, to make up for the cuddles that we missed out on during his first month. I don’t remember having too many visitors in the first few weeks. I think a lot of our friends and family were happy to give us space to enjoy T as much as we could, we didn’t even have to ask for it. We were very fortunate.

T kept me busy. Despite the lazy mornings snuggled in bed, we tried to get out of the house as much as possible. I wanted to show him everything. We joined a baby sensory class, swimming lessons and even had a family wedding to attend. And let’s not forget the long walks in the baby carrier, plus the coffee and lunch dates with various friends. I was really enjoying being a Mummy. I was fortunate that the majority of the time, T was a great sleeper. I’m not sure if any other NICU parents experienced this, but I found that T slept really well overnight. He only ever woke for one night feed – unlike his younger brother who is the absolute definition of a sleep thief! I now know that I got off very lightly in the sleep department with T, and firmly believe that it was easier to sleep in our quiet house compared to a noisy NICU. 

I was feeling very much like a “normal” Mummy now. I had gotten to know my boy. Become familiar with his routine. The things he liked and disliked. What soothed him when was upset. My husband loved to come home from work and take over, spend quality time with T. The whole NICU experience had given us both some perspective on life. We quickly realised what was truly important to us. And it was T. Everything else was trivial.

I was an emotional person pre pregnancy. But I found that I had become more emotional after T came home from hospital. All I had to see was an ambulance driving past us with blue lights flashing, and I would be in floods of tears. It was a big trigger for me. And it was for a long time. It doesn’t get to me so much now, but if I drive past a specialist neonatal ambulance, that can sometimes bring back the memories. Thinking about it all was just so overwhelming, and still quite unbelievable. Looking back, I was struggling to come to terms with having been a NICU parent. Yes, we had been given a warning that T may need to stay in there, but it was just so alien to me, I never took the time to contemplate the reality of it. I didn’t take the time to understand what that would actually mean. And even after having the experience that we had, I still couldn’t believe that we had been through that as a family.

We had a family wedding about three months after T was born. I was very much looking forward to it, seeing a lot of extended family and introducing them all to T. What I wasn’t prepared for, was how emotional it would make me feel. I spent my first night alone with T as my husband was best man as it was his brothers wedding, and quite rightly, they were having a last hurrah with the rest of the Grooms party. T and I went for dinner with my in laws and sister in laws, and I vaguely remember a conversation between us all about me and T being alone overnight, my sister in laws in the room next door kindly offering to help me through the night if need be. I could feel myself welling up – and this was not the place for me to have an emotional break down, in the middle of pizza express. Nothing was said to upset me at all. I suddenly felt so overwhelmed by it all, feeling particularly nervous about being without my husband overnight. Did I need to worry? No. T and I were fine. There was no banging down the door of my sister in laws overnight. I do wonder if I would have felt the same way if we hadn’t been in the NICU? We will of course, never know.

Fast forward to the wedding reception and my brother in laws Groom speech. To my surprise, he mentioned T. He went on to say to all their guests how happy they were that T was at their wedding and were happy to report that he was doing so well post surgery. Well, that was me gone. I didn’t want to smudge my make up so I just allowed the tears to fall. Again, it was that feeling of being overwhelmed, and this time, by kindness. We had been overwhelmed by our friends and families kindness during T’s NICU stay. But, in the moment, I don’t think we truly had the chance to process it all. It is true that they say, in that kind of situation, you find out who your friends are. And my god were we lucky!

A few months after the family wedding, we got everyone together again, but this time, for T’s christening. We joke now, that it was practically a second wedding due to the amount of guests we had. But, we wanted to use the opportunity to get everyone together who had been there for us. We felt that our friends and family deserved to be there. And it was a great day. What I didn’t foresee was how overwhelmed I would feel, especially as the Christening was my idea. But, thinking about it now, it was ok that I felt that way. My husband decided to say a few words, to thank everyone for coming and for their support. I was just about holding it together when my mother in law stood up and said a few words about my husband and I. How tough it had been for us and how well we did to get through it together. Once again, tears streaming down my face. Even my husband got choked up by his Mum’s kind words. In that moment, all I could think about was how far we had come. There were a couple of hairy moments where we didn’t know what was going to happen, but here we were, celebrating our boy with all of our nearest and dearest. We were so fortunate.

September came around. There was lots to look forward to – birthdays, a family holiday to the Scilly Isles, but also the worry and stress of T’s first follow up appointment at Great Ormond Street Hospital. I was dreading it. Just getting there was stressful – I do not know how people who live in central London get around with a pram! Hats off to you! We coincidently had to make this trip on my husbands birthday – what a treat!- and it was the day before we were due to fly over to the Scilly Isles. It was great to have the thought of celebrating my husbands birthday and impending trip to get me through this appointment.

T had to see the Respiratory team and have a CT scan. We took him to have both hands cannulated for the scan, thankfully with the use of some numbing cream for his tiny hands. But even with said cream, it took a long time to get the tiny cannulas into his tiny hands, and I was still wincing, despite knowing it was causing him any pain. You would have thought I would have been used to it by that point, but no. I was feeling the pressure of the CT scan because the hope was that I would feed him to sleep and he would sleep through the entire scan. I was surprised, and relieved, that he managed to do so. It was positive appointment, but we would be back again in six months time for another check up. As a baby, he wasn’t exerting himself. We would know a lot more as he grew and became more active. He wasn’t even crawling by that point as he was only six months old. Only time would tell, we could only hope that the more active he got, that his lungs could cope.

Those first six months of T’s life had been a rollercoaster ride. We had enjoyed having him home with us for the past five months, but looking back on that time now, I realise that I was not ok. I was struggling. Being in the NICU was a trauma for me, almost 4 years on and there are still things that can trigger me. I had T to focus on everyday. I didn’t have the chance to fall apart. I had to just carry on and hope that time was a good healer. I didn’t really talk too much about how I felt about the experience – I was able to tell people what had happened – but talking about the effect it had on me, admitting to myself how hard I had found it, I couldn’t do that. I didn’t want to admit to anyone, let alone myself, that I was struggling. I can see that now. But sometimes, you need time to admit such things to yourself. I took me a long time to realise that it was ok to feel the way that I did. It was ok, not to be ok.