I’ll never forget the day we were told the triplets will be coming home on oxygen. It was overwhelming to say the least and we had soo many questions we wanted to ask. Ethan, Finley, and Michael were born at 27 weeks and they had a difficult start to life, especially Finley who was ventilated for 7 weeks. They were so tiny and so vulnerable. There were many worries and concerns about bringing them home, one being about the winter months to come as the nurses said they will be in and out of hospital with Bronchiolitis. Being so premature, you tend to pick up bugs much easier. To add to our anxiety and worry we now had to try and get our heads around all 3 of them coming home on oxygen.
We were very lucky to have such amazing staff that helped and supported us through this journey. The oxygen nurse at the hospital told us that because you have a baby, in our case 3 babies, on oxygen you can apply for a temporary disabled parking permit and that we could apply for disability allowance. She also told us that we needed to tell our car insurance that we would be carrying oxygen in the car and to inform our house insurance that there would be oxygen in the house. We also got in touch with the local fire station and they came out and fitted new fire alarms downstairs and upstairs. These are thing that we never even thought about or considered.
After 3 months we were told that we could bring Ethan and Michael home. We had spent 3 nights on the unit with both boys before being allowed to come home. Unfortunately Finley, who only weighed 740g at birth, ended up staying in hospital another 4 weeks. These few nights gave us confidence in caring for our babies. We got use to changing the oxygen over from the larger cylinder to the portable ones. Bathing the boys on our own, but still in ear shot of the nurses in case we needed help. This was one of my main concerns, how do you bath them when they are still on oxygen. Months ago when they had their first bath and they were on CPAP, I was more worried about if I was holding them correctly than all the tubes and wires. It’s funny how your worries and concerns can change.
The day came, this was it, we were about to leave the hospital for the first time with Ethan and Michael. We placed the backpacks on our backs, picked up the baby seats and walked out of the hospital. This was the weirdest, surreal feeling ever, we were sad to not all be going home all together, excited to be taking 2 of the babies home and petrified to not have our ‘security bubble’, the amazing nurses and doctors by our side, they had become our second family for the past 3 months.
We were far more nervous when we got to take Finley home, his oxygen levels were a lot higher than his brothers and he needed a lot more specialist care. We didn’t get to stay on the unit this time, I think the staff must have thought we were pros at this by now!!! The day came to bring Finley home, we ALL went to pick him up, we arrived at this hospital together and we are going to all leave together. It was a lot more emotional saying our goodbyes this time round.
I remember walking through the front door, taking the babies out of their car seat and laying them on their play mat, I must have checked Finley’s oxygen about 20 times, paranoid that it wasn’t working or that I had done something wrong or that the prongs weren’t in his nose properly. I wasn’t this anxious or unsure with the other 2. I think it was because Finley was on more oxygen than his brothers and was still very dependent of it. He also came home tube fed, but that’s a different story! For the first few days when Ethan and Michael came home I found myself checking the gages on the oxygen cylinders, convinced we wouldn’t have enough for the coming night or we’d be going out and one of the tanks would run out. I can confidently say that this never happened. You really do get used to these new changes, planning in advance and making sure you have ordered new oxygen cylinders before any of them ran out.
They gave us 2 large oxygen cylinders and, 2 portable ones per baby. We had 3 large upstairs and 3 down stairs. At first we used the large tanks every time we were at home. We found over time this was quite restricting and we started to use the portable ones during the day and the large tank at night when they were sleeping. We found it easier to use the portable oxygen when changing nappies on the changing table, bathing the babies whether it was on the kitchen table or upstairs in the bath and walking from one room to another all without having to keep changing the oxygen over. We found on a number of occasions we’d pick up one of the babies and walk off, forgetting they were attached to the oxygen! You can NEVER have too many of the face stickies, because as they get older, they start to pull at their tubing a lot and the stickies lose their stick. Also don’t forget to put the stickies on so that you pull the tab part down not up. We found that it kept the tubes from slipping out when they were being constantly pulled by Finley and his brothers. Also when the babies started to move around it was quicker to move the portable oxygen towards them than move the baby towards the oxygen. Finley would get himself and his brothers all tangled up!!
At first it was quite daunting knowing that we were the ones now in charge of the boys oxygen but the support we were given was incredible. The nurses had trained us up and answered any questions we had. We also had a service come out to the house specifically to help and support us with the oxygen. They were only ever a phone call away and we never felt like we were ever on our own. They would come out to us once a week, talking about the next steps of weaning them off the oxygen and explained the downloads. The downloads always took place at night time, the babies are less likely to move around which sets off the alarm. It was actually quite comforting when we did the downloads because the babies were attached to a monitor that registered their SATs, it was very reassuring.
It soon becomes part of your daily routine, baby wakes up, change the large oxygen cylinder over to the portable one, put the back pack on pick the baby up and off you go. Always put the back pack on before picking the baby up and don’t forget to take it off before putting the baby down. The back pack didn’t zip all the way up with the oxygen in it and when you bend over it can slip out!
We got in to a routine of changing the nasal prongs every week, or more often if the prongs get clogged up with snot from a cold, milk from being sick or food when weaning. Michael was only on oxygen for a few weeks and Ethan a couple of months. Finley came off his just before his first birthday, which was a huge celebration.