Around 90,000 babies are born sick or premature every year in the UK. Karianne's son Tommy spent 102 days in NICU after his premature birth at 24 weeks and four days.
Now Tommy is a healthy 3-year-old, Karianne reflects on their experience of his premature birth and the support their family received.
Pregnacare is proud to support the services of Bliss, the charity for babies born premature or sick, and their families.
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’.
Tommy was born in January at 24+4 weeks after a really spontaneous and quick 30 minute labour. He wasn’t due until the end of 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 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.
When 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.
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.
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.
A super special day for us was when 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’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.
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!
The trained volunteers at Bliss are on hand to help you and are there to support families whose little ones need neonatal care, no matter the reason for their stay, or how long they are there for.
Support can be given in person or remotely, via the Bliss email and virtual support services. Please get in touch at hello@bliss.org.uk for support and information via email or video call. More information is available here.
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