The highs and lows of going home – Victoria’s story

Victoria describes going home on oxygen, the fear of germs, and the gravity of what you have been through hitting home when you leave the hospital.

From the day my son, Arthur, was born unexpectedly at week 28 of my pregnancy, taking him home was something I yearned for so badly. As the days in hospital turned into weeks, and then into months, it started to feel like that day was never going to come.

Splitting my time between Arthur’s hospital bedside and my 20-month-old daughter at home had been impossible. I was stretched beyond belief, driving between home and hospital to do nursery drop-off and pick-ups. I made sure that every evening I put her to bed before returning to hospital until 10pm at night.

But finally, after 79 days in hospital, all that longing was over and we were discharged. Never again would we have to get in the car, drive home and leave our son alone in hospital. Our family would be together under one roof.

Once we got home on that long-anticipated day, there were highs and lows. On one hand, we didn’t have to ask permission to pick up our son, we didn't have to record his feeds, and we weren’t sharing our space with other parents or staff. We were able to be the parents we wanted to be. I felt free to snuggle him and call him soppy names – which I didn’t feel I could do with other people around.

Looking back, I really got to know Arthur once we had taken him home. I learned, for instance, that he likes me to sing to him. In those first few days at home, I would wake up at night and see his little body lying next to me in his cot, and I’d feel so relieved and happy that I thought my heart would burst.

But, on the other hand, at home, we were without the support of medical staff: the consultants who visited on daily ward rounds and the dedicated nurses who were on hand 24 hours a day for the two and a half months we were on the unit. On our last day in the unit I sobbed as I packed up Arthur’s belongings, because we were having to say goodbye to the nurses and other parents who had become like family to us.

Due to his prematurity and not having fully developed lungs, Arthur had chronic lung disease. He came home on oxygen and spent a month with a nasal cannula hooked up to mobile oxygen cylinders. We had one cylinder installed on each floor of the house and a mobile one with a rucksack.

I felt really self-conscious taking him out with an oxygen tank under the pram and tubes taped across his face. I felt that people were staring at him and a few times I heard other children ask their parents what was wrong with him.

Before we left the unit, they advised us not to take Arthur into crowded areas, like buses and coffee shops, to reduce the chance of him catching any germs which might make him unwell. If someone sneezed I would race in the opposite direction. And because of the risk of germs, we would wash our hands constantly, keep everything sterile. It made me feel unreasonable and overprotective when I had to ask our friends and relatives to wash and use hand sanitiser if they wanted to hold Arthur.

Even though we have been so careful, his lung disease has also meant lots of dashes to A&E in the middle of the night when a simple cold has developed into bronchiolitis and, most recently pneumonia. Whenever he has a bad cold or high temperature I almost always pack up an overnight hospital bag and leave it next to the front door, just in case. Bringing a premature baby home means always having to be prepared.

When you bring your baby home after a long period in hospital, it’s important not to underestimate the toll that experience has taken on your emotional and physical health. It’s likely you’ve been surviving on hospital canteen food and ready meals for weeks. Sleep, as for any new parent, is scarce, and if you’re expressing milk for your baby, you can be pumping, washing and sterilising the parts every two-to-three hours, including through the night.

Whilst Arthur was in hospital, there was an element of adrenaline keeping us going. Once I got home the exhaustion caught up with me. Neonatal intensive care is a world that you unexpectedly get thrown into, and I’ve found it difficult to share my feelings with friends and family.

It was only when I left the bubble of the hospital and got home that the trauma of a premature birth and the experience of neonatal intensive care hit me. I was diagnosed with PTSD and I was lucky to receive CBT (Cognitive Behavioural Therapy) very quickly.

It's been a year and a half since we bought Arthur home and, over that time, it has become much easier. If I were to give advice to anyone bringing a child home from hospital it would be: first, to accept support from friends or family - whether that’s cooking, taking the baby for a walk whilst you rest, or caring for other siblings. And second, to reach out to other parents who have had similar experiences.

Spending time with other mums I met on the unit has really helped, as we all understand what life with a preemie is like. We turn to each other with questions, reassurance and comfort. This has, without a doubt, been one of the most important sources of support, and we feel very lucky to have found each other.