Dear new NICU parent…

Our “Welcome home Jasper” shower

If you’re reading this after giving birth early, congratulations on the birth of your beautiful baby! I remember feeling a bit strange when the first person said that to me. I wasn’t sure if I was ready to be congratulated but I soon realised that I had just had a baby, even though he arrived three months too early. Like me, you probably never imagined the first time you saw your baby, they would be covered in wires and tucked away inside an incubator. 

My son, Jasper, made a very rapid entrance into this world at 26 weeks. I just about made the 40-mile journey to the nearest NICU (Neonatal Intensive Care Unit). Two doctors from the NICU came to the delivery suite and began to explain to me what I might expect but all I remember hearing was white noise. I didn't actually think they were talking to me. However, the contractions continued and after a very rapid delivery, the NICU nurses quickly whisked Jasper away. I barely even caught a glimpse. I didn't even ask if he was breathing or if he was okay. I couldn't bear to give away a bit of my heart. 

Meeting our son 

My husband and I, without even knowing their names, had to instantly trust in the nurses and hand over our fragile baby to their care. There was nothing I could do for him. I remember feeling completely broken and totally useless. I wanted to jump straight off the delivery bed and run after him, but I couldn't. Five hours after delivery, we were able to meet our son. I had never even really heard of a NICU before this point and stepping onto the unit for that first time was a complete blur. Jasper was under a green sheet and covered in wires head to toe. The noise was totally overwhelming but among all the chaos was also a sense of calm. Every nurse, doctor and consultant were so welcoming and reassuring from the first moment we met. I can’t remember how many questions I had running through my head but what I do remember is how much time the nurses spent answering them. They would ensure we felt included in the care and conversations about Jasper’s care and made sure we understood what was happening. 

Instant expert 

What at first feels very scary and ‘above your head’, soon becomes second nature and you will soon be able to be a voice and discuss very medical things about your child. I feel I could retrain as a NICU nurse. As Jasper was extremely premature, we knew we were in for a long road ahead but as the nurses and doctors told us, “he is on his own journey’. I was then introduced to my new ‘breast’ friend: the hospital0grade breast pump! I was shown how to massage and pump my milk and shown the expressing room and how to clean all the parts. So every two to three hours, I would pump away. Please don’t ever get disheartened! Every millilitre of breast milk is like liquid gold and the nurses will support you if you are struggling. I lost count of the times I cried while pumping but it gets easier! You get used to the NICU way of life. Ward rounds, blood gases, ROP (Retinopathy of Prematurity) scans, head scans, X-rays, blood transfusions, bradys (bradycardias), desats (desaturations), EBM (Expressed Breast Milk)… all this terminology suddenly becomes all you talk about. 

I found it so hard to sit and see babies come and go. I remember crying every time a baby would arrive and then leave before Jasper. But, over time, I began to feel excited and happy for those babies and families and it started to give me hope that one day soon, that too would be us. I also remember looking at the monitors and saying to my husband “what a milestone it will be when they get turned off”.  Every day is a rollercoaster in the NICU. Every hour things can change for better or for worse, but I just had to trust in the nurses. They remain cool, calm and collected, even during the times when Jasper would have apneas and bradys and turn completely grey. They would stay calm, support Jasper and provide the intervention he needed and then, once he was stable, they would talk us calmly through what had happened and what they did to resolve it. Jasper suffered with horrendous reflux but the team quickly realised this and modified his medicine accordingly. Jasper had three failed extubations before finally staying on DUOPAP (Duo Positive Airway Pressure). He then weaned down onto CPAP (Continuous Positive Airway Pressure), then High Flow and was moved down to HDU (High Dependency Unit). We were elated. He was growing well and maintaining his temperature so was able to begin wearing clothes and the lid was removed from his incubator. We never thought these milestones would happen to us but it did eventually become Jasper’s turn! 

The team want you to be Mummy and Daddy to your baby so, we very quickly learnt how to change his nappy, do his cares and feed him through his NG (nasogastric) tube. The nurses were amazing and giving us the confidence to do these tasks but also stayed close in case we needed support. It was amazing to be able to do ‘regular’ baby tasks and bond with our baby. Unfortunately. Jasper caught a virus and had to be intubated and moved back up to ITU (Intensive Therapy Unit) for two weeks. This was horrendous after having made so much progress, but the nurses again reassured us that sometimes, it’s one step forward and two steps back. Being the fighter that prem babies are, he fought back and continued his journey even stronger. 

One step closer to going home

The time eventually came for us to be transferred back to our local hospital but we did not want to leave. Having spent the best part of 12 weeks sitting in the unit, we felt part of the NICU family. There were lots of tears shed that day but we also knew that moving to our local hospital was a step closer to home. I remember feeling petrified and so anxious about moving but we were reassured many times that they wouldn’t be moving him if they didn’t feel he was ready. After two weeks in the SCBU (Special Care Baby Unit), learning to feed and take a bottle, we were discharged home, 1 day after his due date! At the time of writing this, Jasper is nine months old, six months corrected from his due date. He is healthy and hitting lots of milestones! I am still very anxious and leaving the hospital environment was very hard, but every day gets easier. These little babies of ours are so strong and determined so please, never lose hope. Talk, sing, read to them. They know you’re there! Also, take time for you: it is so important to step away and have some ‘you’ time. Most importantly, talk. Ask those questions, reach out for support and never be afraid to say what you’re thinking. You are not alone.

Thanks to Chloe for sharing Jasper’s story.