At this time of year, when so many people are celebrating special events, it can be especially hard to be in hospital with your child. So how do you cope? Mum, Michelle, spent her 30th birthday and Halloween in hospital. Here’s her story.
I was going to write about August 2015, the month I turned 30, but on looking through my hospital notes, my entries stop between the end of July and mid-August. This was half way through our 6 month stay in hospital, and lack of notes likely reflects the particularly rough patch we were going through. My daughter was waiting for an operation, but infections would arise requiring increased medication and isolation. At this time it also led to intubation, something I naively thought only happened immediately before an operation or for an induced coma. I did not realise how much could be ‘done’ for babies. We slowly crept up this invisible scale from breastfeeding over to tube feeds, and from oxygen masks to CPAP – eventually to full intubation (and back! – but we didn’t know that in August). I remember feeling no interest at all for my birthday – why would I? This was the most stressful, unsettling, scary time of my life – I couldn’t care less about my birthday. I don’t think I would have told anyone. Every day was spent at her cot-side from dawn until dusk; the 16th August would be no different. I do recall my husband bringing my cards to London from home but I felt very distant, like it was someone else’s birthday. I had a feeling of homesickness seeing people’s names in the cards whom I hadn’t seen for months and who hadn’t even met our daughter yet. My life was now in London, my little one was in London, I had no desire to be any distance from her and I knew my friends would be there when we all got home. Nurses would often say ‘you can leave the ward’ and ‘you should get out for a bit’. You will do what feels right. When your baby’s health is variable hour by hour, choosing when to be there and when to make that dash for essential supplies is determined entirely on an individual basis.
My first diary entry after the end of July was on 19th August when we had a big chat with the surgeon. I’m sure my parents would have rung me on my birthday but honestly, I cannot recall it now, our minds were completely absorbed by Brompton life. I would often find myself deliberately not talking about any day-to-day things with family or friends – events and plans were just too changeable; time moves at a strange pace in hospital.
I was not a Halloween fan, however the 31st October 2015 was a beautiful day and one I still fondly remember. My daughter had now had a successful operation and we were on a different path to that in August. We just knew things were on the up so if there was an event to take part in, we were going to be included! Up until now I had not been bothered about ‘dressing’ my daughter, she was incredibly poorly and the number of leads, wires, tubes and probes were just not conducive to anything extra on her body. I hoped it would be easier for the nurses to do their jobs more effectively if my daughter wasn’t wrapped up in material. However, with obvious signs of recovery, Halloween saw us dress her in a baby gro and a gorgeous knitted pumpkin hat!
The play team were very active in offering up crafts and activities for families to do at the cot-side, and dependent on the health situation at the time this interaction would either be welcomed by myself or declined. Halloween was the first calendar event that I was certainly happy to take part in, purely because my daughter’s recovery was now evident. I still have the paper sparkly bat mobile I made her!
When you have been through so many unplanned and unnerving days, the opportunity to plan for Halloween was very welcome and certainly sparked an energy and light-heartedness that we just had not be able to experience with our daughter since she was born. This felt like the first chance in 5 months to do something that the rest of the world may also be doing, at the same time!
Ironically, my daughter has since become a big supporter of Halloween and now, although the pumpkin hat is much too small, it remains in the ‘hat drawer’ as a happy memory.
Ultimately, you will choose to acknowledge or plainly ignore any event which may crop up during your stay and you will choose whichever works best for you at that time. Nurses and play team staff, in our experience, do their very best to bring ‘normal life’ into the hospital for children and their families but it is there IF you want it.
Keeping a diary for me became very important during our stay and I would recommend it – indeed it was another mum who advised I do so. You don’t have to open it once you’re home, but it may help navigate through the riot of thoughts that can go through your head during hospital stays.