World Prematurity Month 2022: Returning to hospital after NICU
Parker in PICU (Paediatric Intensive Care Unit) after being re-admitted
After falling pregnant for the second time, I always knew it would be different. I was immediately labelled a high-risk pregnancy. My first-born child, Hazel, was slightly premature due to pre-eclampsia so I was closely monitored. I went through the pregnancy knowing there was a good chance of premature birth, but having no idea what that would actually mean for me or my baby.
Parker spent 21 days in neonatal care before coming home
At 25 weeks my blood pressure shot up and I was admitted to hospital. There were ups and downs, but I managed to hold on until the inevitable happened and Parker was delivered early at 33 weeks’ gestation. It was much more difficult for him than I had ever expected because his lung collapsed and he was put on a ventilator. However, after that was resolved, Parker’s NICU (neonatal intensive care unit) journey was fairly smooth. We slowly weaned down his oxygen levels and he was discharged with an NG (nasogastric) tube after 21 days.
Home to a mix of emotions
I had no idea about NICU life: how serious it could be or the emotions that came with it. I also had no idea that it could affect my baby after we had been discharged. Coming home from NICU was a real mix of emotions. Firstly, we got our baby, but secondly, we got our baby, tubes and all. We were responsible for him, and there were no nurses or doctors on hand should anything go wrong.
Terrifying return to the familiar
Having to take Parker back to hospital for respiratory problems was terrifying. He was four months old (just over two months corrected) and still so small and vulnerable as he passed through A&E with lots of other sick children. The familiar sounds of the monitors and the re-admission of NG tubes and oxygen felt like such backward steps. This time around I understood the terminology better and knew what criteria would meet certain needs. My mind was racing through the worst-case scenarios, and why wouldn’t it? I’d seen it all before and everything came flooding back.
“My mind was racing through worst-case scenarios, and why wouldn’t it? I’d seen it all before. Everything came flooding back”
Children’s hospitals are very different to NICU. We had our own room, just me, my boy and the same four walls. NICU is stressful, but as it’s a shared ward, you can see all the other parents in a similar situation and you even make friends. NICU brings you through a journey in structured stages: progress is tracked and almost ticked off day by day, week by week. But the children’s hospital was very different. The nurses deal with so many other children of various age groups and illnesses and aren’t specialised like NICU nurses. I didn’t feel they could ‘read’ Parker like the NICU nurses seemed able to do. However, the hospital took good care of my baby and, as we moved from the Medicine Ward to HDU (High-dependency unit) then to PICU (Paediatric Intensive Care Unit), they were compassionate and showed understanding of what we were going through.
Caution and anxiety after neonatal care
Life after neonatal care has had quite an impact on us as a family. After that first admission, there were many more hospital visits for respiratory issues as we went through our first winter. During our journey, my husband Gaggs and I have become cautious, health-conscious parents, who are anxious about what’s to come. However, at the same time, we have become more educated. We’ve learnt to be tough and resilient, and are not as phased by things that would have previously been very scary.
Hard to understand
Parker (right) with big sister Hazel, mum Megan and dad Gaggs
I think it’s hard for other people to understand our situation or know what to say when things go wrong. Most people think that once you take your baby home, they will be like any other full-term, healthy baby. Even I thought that at first! The number one comment we get from people when sharing parts of our baby’s story is ‘you’re so strong, I don’t know how you do it’. The fact is, we are not any stronger than the next person. We just have no choice.
Our boy is now 18 months and growing stronger by the day. While he still has some respiratory issues, we’re finding ways to manage them. We’re proud to say Parker is thriving, despite everything he has been through, and is such a happy boy!
Thanks to Megan for sharing Parker’s story.