Going home with reflux - Jonny's story

It felt like one step forward and two steps back when, after one night at home, Jonny and his son were back in hospital after a bad case of reflux.

Our twins, Olivia and Jake, were born 8 weeks early and, due to breathing and feeding issues and a lot of reflux, it was a rough three months in hospital. We found ourselves having to adapt to neonatal life very quickly, and it was a steep learning curve. I remember listening so hard during ward rounds to make sure I didn’t miss anything the doctors were saying, trying to understand all of the medical jargon. We were just living day by day, getting through on autopilot.

The hardest part for me and my wife was the feeling of helplessness, of having no control. In the first few days we were encouraged to carry out simple cares like wiping the babies' eyes or changing their nappies. As first-time parents, we didn’t have a clue what we were doing and it was hard having the added pressure of feeling like other people on the unit might judge us. We had excellent support from the nurses though, and after the first few weeks, it seemed to come naturally.

One of the most helpful things for us was a huge whiteboard on the wall of the unit which listed the name of our nurse for the day and all the care times. This meant we could be there for every care and feed if we wanted to. The first time I got to feed the twins (the tiny bottle looked huge compared to them) was probably the first time I really felt like a Dad and like I was actually able to do something to help them.

Everything seemed to be going really well for the first month and both babies were doing well with being fed from a bottle. We thought it wouldn’t be long until we went home but unfortunately this wasn't to be the case.

Olivia and Jake both started to suffer from reflux – a common issue for premature babies. It became so bad that they were constantly setting off the monitors as their oxygen levels kept dipping. This went on for weeks and, it might sound strange, but we somehow got used to the desaturation alarms after a while. They just became part of their daily routine.

This was until early one morning, we got a knock on our door. I could immediately see by the look on the nurse’s face that is wasn't good news. My heart started racing and I instantly felt sick to my stomach. She explained that Olivia had had a very bad desaturation in the night, and they were moving her back to the ICU.

We quickly got dressed and went in and could see a couple of nurses rushing about trying to get her temperature up. This was the first time I had actually felt like we were in trouble and we might lose our little girl.

Thankfully, over the next few hours, the nurses were able to get her temperature back up and we were told she was going to be okay. We wanted to know what had gone wrong, but we never got those answers. We just knew that Olivia had had a lucky escape.

At this point it was decided that Olivia should go to Sheffield hospital, nearly an hour away, for further tests. That meant that for one month, our twins were on different units and my wife and I had to split our time between them.

Finally the day came when we were told we could go home. I felt excited and relieved but also fearful about what would happen next. Having been in the neonatal unit so long, it felt like our home and all we had known since the twins had been born. The nurses and medical staff felt like family to us and we felt they knew everything about our babies. As we had always had a room on the unit, it felt like a little community which we were now leaving behind.

We had only been home a day when in the early hours of the morning, Jake kept being sick with reflux, choking until the point that he couldn’t breathe. In a mad panic, I turned him upside down, patted his back and managed to get the sick from his mouth so he could breathe again.

While my wife stayed home to look after Olivia, I took Jake back to the hospital and went straight back up to the NICU. It felt like we were taking five steps backwards as we had only been home one night. But we were turned away from the unit and told to go the children’s ward.

Everything about the NICU had been familiar, so it felt like starting again. I didn’t know any of these nurses or doctors and they didn't know Jake, so I had to go over everything again. I found this very frustrating considering that just on the next floor was the medical team we had spent the last three months with. It felt totally alien to me.

The staff on the children's ward had different opinions and ideas about Jake's care to the ones the staff in the NICU had. Even the milk they wanted to give him was different to what the twins had been on in the neonatal unit.

I managed to get one of the nurses from upstairs to come down with the right milk but they still wouldn’t let Jake go back onto the neonatal unit. So we had to spend the night on the children's ward feeling very lost, scared and lonely. Of all the nights we had spent in hospital, this was the worst. After two days I could take him home again, but it felt like a lifetime.

It was a huge relief to go home again; I was just hoping that this time we could make it last. Thankfully after a few days at home the twins seemed to be back to full health, feeding and sleeping like normal babies. This was the first time we could actually relax, enjoy the moment and reflect on our journey. Even though we had spent three months with them in hospital, it was only at this point that we really started to become parents.

Now, four years later, Olivia and Jake are doing really well. They love going to pre-school, all dressed up in their school uniform. They are undoubtedly the best thing that has ever happened to us.