After spending so much time in the neonatal unit, I felt that I knew some of the staff like they were members of my family. Every single individual had so much passion for what they did. I learnt that quite a few started in their roles after experiencing the same thing I was. Some had spent weeks in the neonatal unit as a parent. Some had supported friends or family going through their neonatal journey. Some had lost a child.
Though I knew that Bruce was in such safe hands, it didn’t stop me missing him. Every minute spent away from the hospital carried some pain and the guilt that his cries in the night weren’t answered by me.
At the beginning of October 2012, I was given the all clear to drive again. My blood pressure was stable with the medication I had and I’d almost made a full recovery from the emergency C-section. Driving gave me my freedom back. It was so comforting to have this once again and know that I could get in my car at any time to see my beautiful little boy. It was an incredible feeling, I’m smiling now just thinking about it.
Bruce had made huge leaps with regards to his progress. At 8 weeks old he was now feeding regularly, he could regulate his own body temperature and was allowed more time out of his cot for snuggles with Mummy and Daddy. The little air sacs in his lungs however, weren’t quite there yet. The doctors confirmed that yes, we could now start looking at arrangements for coming home but Bruce would need to have home oxygen in place. The doctors had diagnosed him with Chronic Lung Disease. It sounded scary and hit me quite hard. My little boy was (and still is), however, a warrior. He could and would get through this.
To make sure that myself and my husband were confident with the oxygen support and the specific cares that Bruce needed, we were invited to stay at the hospital. If you didn’t know (and I didn’t at the time), they have apartment style rooms in some neonatal units. It had a bed for me and John, a cot for Bruce, private bathroom, even a desk and TV. It was the first time that we could all be a family together.
We stayed over for 2 nights on 15th and 16th October 2012. It was bliss! Well, apart from the second night. My husband and I agreed that he would do the night feeds the first night and I would do the second. Come John’s nightshift, Bruce woke only once. Perfect little sleeper. Come my nightshift, four times between the hours of midnight and 6am…little tinker hehe. He knew how to wrap me round his little finger. I didn’t mind though.
Having no kitchen, we had to eat hospital food and McDonalds for those days. It was amazing though and it really didn’t take us long to become confident with changing the tubes for his oxygen and swapping the canisters. Although it’s not something you expect when you’re expecting (excuse the film pun), we took it in our stride. It took 2 of us to bath Bruce. One to keep an eye on his oxygen tubes and make sure no water got in and one to actually bathe him. That was the norm for us though. Bruce was our first and is our only child, he’s perfect in every way.
Of course we had specific day to day difficulties to overcome. Dressing a child on home oxygen is a mission in itself. But we mastered the art of putting jumpers on from bottom to top. Friends and family really took this into account when buying clothes as gifts. Cardigans were the best!
After staying with Bruce at the hospital, it felt strange to leave him there again. It felt like a natural step for him to come home with us straight away but I trusted the doctors decision. They were right. We still had a lot to set up in terms of medical equipment and they had also arranged for us to complete a session on children’s first aid with them.
Air Liquide (the oxygen supplier) rang the day we were leaving the hospital after our stay. They had availability to come and install the oxygen at home the following day. The news couldn’t have come at a better time. After feeling quite down at the thought of leaving him, I knew that this was the final step of the journey.
The doctors confirmed that Bruce could leave the hospital and come home that Saturday.