“Looking back now with the knowledge from spending so long there, we had no clue how poorly Tommy was at the start.” -Karianne’s Story

At around 22 weeks into my pregnancy, after a lot of bleeding and numerous trips to hospital, I was informed my waters had gone and told Tommy was likely to be born premature. I was told that at that stage the chance of survival was low and I remember everybody kept saying to me ‘you need to get to 24 weeks’.

We were kept in hospital and on the 7th Jan 2021 at 11:58pm Tommy was born at 24+4 weeks after a really spontaneous and quick 30 minute labour. He wasn’t due until 27th April! Tommy was born breech and still in his sack weighing 710g. As soon as he was born, he was assessed by the amazing NICU team that had rushed to be with us and he was intubated. He was then placed into a travel incubator where he was wheeled beside me and he had his tiny little eyes open staring at me at which point I remember thinking to myself that everything was going to be OK.

Seeing Tommy so tiny, attached to so many wires and covered in bubble wrap broke our hearts. His incubator was set to 40 degrees heat to keep him warm and we were told we could touch him but do not rub the skin as it could cause damage. But the staff and nurse in charge of Tommy that night and for the next few nights were absolutely incredible. I remember her being non-stop as Tommy was really poorly, but she made us feel so much more at ease as she explained everything to us and didn’t seem panicked.

As soon as he was born, Tommy’s main issue were his lungs. Looking back now and having the knowledge we gained from spending so long in there, we had no clue how poorly Tommy was at the start. He was on 100% oxygen on the ventilator, so he was given nitric oxide and sedated as a last resort and thankfully he responded well.

I remember after my first night in the hospital I was so excited to rush down to see Tommy in the morning as I’d managed to get my first bit of colostrum for him to have. As I walked in, they had given Tommy his first attempt off of the ventilator which he really didn’t respond well to and I remember seeing the nurse tapping him on the back saying ‘come on Tommy’ with all alarms buzzing. I just sobbed as I had no idea what was going on.

Over the course of the 102 days Tommy spend in NICU, he had seven attempts off the ventilator before he went onto CPAP which he never really liked. We believe it was more from the pain of the mask and he actually has a scar on his nose now where the mask cut into him. He was later transferred to high flow which he seemed to do so well on and then onto low flow for the last few weeks before home.

I finally held Tommy on day five and it was the best feeling ever. Tommy responded so well to being cuddled and so we held him as much as possible from this point. The nurses were just incredible when they got him out of his incubator, it took 3 or 4 nurses but they all wanted me to have a cuddle as much as I did.

Tommy had to have a longline and numerous cannulas into his tiny veins during his stay and so many blood transfusions. We were taught to tube feed by the nurses, we had to do so many to pass and be allowed to do it independently. The nurses were amazing at making sure we were involved and let us do as much as we wanted. We would do all nappy changes whilst we were there including mouth care, feeds, giving meds, and bed changes.

Tommy struggled quite a lot with de-sats and so they had to do an echo scan on his heart which revealed he had the duct. Tommy was started on Ibuprofen for this and there was a very high chance he would have needed an operation to resolve this but thankfully he avoided this and the medication/growth managed to resolve it.

At around two weeks old, Tommy took part in a study which involved his being given Azithromycin to see if it can help reduce the risk of chronic lung disease in pre-term babies.

On the 31st Jan, Tommy had his first NEC scare. It was my turn to feed Tommy and I pulled up yellow aspirate from his stomach. The staff were amazing and he was given an X-Ray within minutes, feeds were stopped, antibiotics were started and a blood transfusion was given. After a few days there was no sign of NEC so feeds etc were started again. This happened around 4/5 times whilst Tommy was in NICU, but the staff acted so fast every time and the slightest sign of an infection and everything was done to prevent further illness it was just amazing.

On the 3^rd, Feb Tommy was started on steroids to help his lungs develop after a few attempts of the ventilator it was decided this was best. The doctor took us for a chat to inform us all about the steroids and made it was it was our choice as again there is potential long term side effects. We decided anything that would help in the moment was the right way to go. He ended on doing a prolonged course of steroids but they did their job in the end. Tommy did get a bit of a name for himself in NICU as he always did things the way he wanted.

On the 28th Feb, Tommy wore his first vest, it seems so minor but it was so exciting for us. Tommy's nurse called us to say we could bring some little vests in and she made it such an exciting time for us. Once we arrived she helped us dress him and gave him time off CPAP and let him have oxygen through the incubator for 15 mins so we could see his face properly.

Tommy had to endure many eye tests whilst in NICU, we all absolutely hated eye test day. The test itself is awful for the babies, and it usually meant Tommy's oxygen requirement had to go up because of the stress. Tommy did have Stage 3 ROP and laser eye surgery was on the cards, but again we managed to escape it as his eyes resolved themselves through growth and even now Tommy has regular eye tests at the hospital but he has perfect eyesight that requires no help.

On the 16th March, Tommy was finally well enough to leave ICU and he was moved over the nursery. For the first week or so I strangely missed ICU as that had been our safe place for so long, however that soon changed and the calm and quiet nursery became so much more pleasant and it definitely felt like the path to home.

On the 20th March I was cuddling tommy, he was on low flow but he was having a really bad day with de-sats to the point his sats dropped down to eight. Luckily, we had an incredible doctor in the bed space next to us as he had had a premature baby himself and, even off duty, he reacted so fast and changed Tommy back to hi-flow in seconds and he was a lot more settled. Antibiotics were started again to be sure there was no infection causing the issues.

The 27th March was a super special day as Tommy was moved from the incubator to a proper cot! Walking into this news was just the best, every step now was 1 step closer to home. Two weeks later he was finally in the new born crib. After being in an incubator for so long and having to ask for help getting him out it was so special to just be able to hold him whenever we liked.

Tommy had a hernia in his groin that didn’t cause any issues but we were told he would have it operated on before he left for home. The day this happened was the scariest day in a while for us, the thought of him being taken away and put to sleep for the operation etc was terrifying. We were informed it could mean taking a few steps back with oxygen requirements etc and a bed in ICU was saved for him after the operation. However, Tommy being Tommy surprised everybody – he didn’t require any more oxygen or the bed in ICU. In fact, he came back to the nursery and was absolutely perfect. He was a bit grouchy for a day but after that he was completely fine.

On the 29th March, Tommy’s ECG leads were removed and we were given home oxygen training and taught the signals to check for issues without the leads. This was a very strange time for us after spending months looking at a screen to check the numbers were OK to not having that was really rough, but it taught us to watch Tommy a lot more and the staff were so helpful and supportive.

From then until the 19th April Tommy did absolutely amazing and was in 0.01% oxygen on low flow and we finally came home all together after two nights of rooming in which went absolutely perfectly. Bringing Tommy home was hands down the best day ever – very nerve wracking but bringing him home to meet his sister and grandparents was just amazing!

Tommy is now a very happy and healthy 3-year-old. He has no health issues at all and is hitting all milestones for his age.

The strength that premature babies have is just unreal. We watched Tommy and so many other poorly babies fight for their lives during his stay and they are all just incredible and so are all the amazing doctors and nurses that care for these babies. We are so, so grateful to them for everything they did for Tommy!