Remy was born 11th August 2018 at 8.55am. We were under the impression everything was okay with the pregnancy when I went into labour at 38+1 weeks. Nothing was out of the ordinary, I had had 4 scans previously and nothing had flagged up. We were told to expect a big baby so when Remy was born weighing 5lb 3oz we were all a little shocked. Remy wouldn’t feed and was purple as he was struggling to keep himself warm.
We had a doctor come and visit us to advise us they thought our baby had Down Syndrome and that they needed to take him down to the NICU to try and warm him up and place an ng tube down to get some milk into him. Our time in NICU was short compared to many as we only spent a couple of weeks in the unit but during that time we had to adjust to a whole new normal.
We had to try and accept his diagnosis whist being unable to do the “normal” things many parents take for granted when welcoming their new baby. The hardest thing for me was not being able to feed my own baby and watching it being forced into his tummy by a tiny tube. Me and his daddy worked tirelessly to try and get Remy to feed from a bottle, trying many different brands of bottle and spending much longer than the nurses liked us to trying to get milk into him orally but we did it!
Remy pulled his tube out and we were able to get enough into him orally in the form of a high calorie formula to allow him to stay tube free. Being unable to pick him up without first having permission from a doctor/nurse was hard, being away from our other two children was harder!! But Remy got stronger and stronger each day.
Nurses were amazing, I spent most nights just sat talking to these professionals with ease which was something I found hard to do with family and friends as they weren’t inside our NICU bubble, they didn’t understand what was going on. I also found myself talking to the parents of the baby in the incubator next to Remy as if I had known them forever all because they knew what it felt like to feel helpless and they just understood me!
Leaving the NICU bubble was such a happy time but also one of the most terrifiying things I’ve ever done. Taking my baby into the world on my own without the constant support and reassurance I had had was daunting. We stayed in touch with the family of the little boy in the next incubator and now the boys ( as well as us parents) are the best of friends. Without this journey we wouldn’t have met these incredible people and we wouldn’t have learnt the valuable lessons we did during our time on the unit.
We feared for the future when Remy was born, we had read such negative stories but he is the most incredible little boy who is thriving more and more every day. He has learnt to roll, sit up, crawl, pull to stand, cruise the furniture, say a handful of words and also sign more words using Makaton.
Spending time in the Neonatal intensive care unit gave us time to adjust to Remys diagnosis with the support of a fantastic team.