Bringing Niko home – Katherine’s story

My son, Niko, was born slightly early weighing a whopping 7lb 8oz. On first appearances, it seemed as if everything was OK but a midwife grabbed my hand and explained that she was going to need to take my newborn baby to NICU as he was not breathing as well as she’d have hoped. We later found out that Niko’s lungs had collapsed and he was unable to breathe without assistance.

When I first saw him in the incubator, he looked like a turkey stuffed into an oven! He was massive compared to the other babies in NICU. Luckily, it was not too long until Niko moved to the High Dependency Unit and was given bigger equipment. Once he had moved out of NICU, we joked that we had completed Level One. There was only one more level (SCBU) to go until he would come home with us.

As we moved through each of the levels, we noticed that the amount of staff intervention and medical equipment diminished. When he moved in to the SCBU, he was in a heated cot with only an NG tube, heart monitor and oxygen monitor.

By this stage, we felt very ready to leave hospital with Niko and the staff echoed our thoughts. We thought we were about to be given the green light to leave but then hit a stumbling block. Niko’s jaundice had returned and he was to be placed back on his sunbed. Once his levels were ok, we were ready to leave once more but we hit another hurdle. Tests revealed that Niko’s bilateral hydronephrosis was more severe than previously thought so we were referred to Great Ormond Street Hospital so that they could support us with this.

The hospital then provided neonatal and paediatric First Aid training for us which was invaluable and should be available for all parents. This enabled me to fully understand how to respond to my son’s needs if he exhibited signs that he needed medical help – for us, it concerned his breathing and how to detect kidney problems. One of the midwives asked the parents if we had any questions about any issues we’d been facing while we were in neonatal care and apart from the questions about NG tubes and oxygen tanks, we bombarded the midwife with questions about best tips for winding. She allowed us to practise on our babies and showed us three different methods. They also bathed Niko with us before we left the hospital and showed us how to do this to ensure that his body temperature would not drop too low. We gained so much confidence about bringing Niko home from this session.

Finally, we were ready to leave. Or so we thought. The hospital refused to let us go without Niko being registered at a GP and the GP refused to register Niko without one of his parents being there in person to sign the paperwork. We explained our situation but they refused to accept an electronic signature. My husband sped down to the doctor’s surgery and arrived just before closing. At long last, we had everything we needed.

When my husband arrived back to the ward in the late evening, a sonographer took a last x-ray of Niko’s lungs and then, we were given the official news that we ready to leave the hospital. We were so excited! We honestly felt like we’d won the lottery. I wrote fourteen cards to each of the staff that helped Niko through his journey and we bought gifts for all the staff. We knew we wouldn’t have coped without them.

We strapped Niko into his car seat. I had his medication in one hand and our bags in the other while my husband transported the most precious cargo of all, our son. We reached the hospital doors and were greeted with the biggest plume of cigarette smoke. I cried. My son’s first breath was second hand cigarette smoke. My husband consoled me and off we drove.

We arrived home and the house that we had so lovingly prepared when I was in my second trimester of pregnancy seemed so desolate. Where was the beeping that had become such a comfort? Where were the staff to help us? Where were the doctors to correct Niko’s doses of medication? I was terrified. The moment I had longed so much for had come and I was now petrified and alone.

When we finally decided to put Niko into his Moses basket, we were relieved that my cousin had invested in an alarmed baby monitor which notifies you if your baby stops moving. It was some consolation as we felt so nervous without any machines tracking Niko’s stats. We found ourselves asking each other what we thought his stats were. We both stared at Niko until the early hours of the morning and finally drifted off, with one eye open. We did not expect the loudest shriek in the world to wake us all up. It turned out to be the alarmed mat which Niko had rolled off. Our hearts stopped and I’m sure we developed a few grey hairs from the fright!

The next morning, after the worst sleep of my life, I woke up early to get Niko dressed so we could walk his daddy to the train station to set off for work as his paternity leave had ended and he had used up his annual leave. I could not wait to show him to the world and show the world to him. It was perfect. I put his pram up myself and off we went. I walked nearly all day stopping to feed and change him as needed. It was bliss. As we arrived home, there was a knock on the door from my friend Natalie who had arranged a meal train for me. Lots of my friends and family had organised to cook and deliver meals to us so that we could focus on being parents and not have to worry about ourselves. It was the kindest and most useful thing anyone could have done at that time.

Niko is now two and half. He is still under the care of Great Ormond Street as an outpatient but he is no longer on any medication and continues to thrive and surprise us each day. We will always be indebted to the staff in NICU at Barnet Hospital and to our family and friends who kept us going. But mostly, we are indebted to our little boy Niko who has always showed determination and strength which kept us strong.

If you are reading this and are nervous about going home with your baby, I’d tell you not to worry. The only two things to remember are: trust your parental instinct and ask for help if you need it. Every parent, whatever their experience, has felt that same level of anxiety as you before going home – you are not alone. Focus on those feelings on joy – this is the moment you have been waiting for!