- Time-outs are essential
There are no two ways about it: being a parent of a baby in the Special Care Baby Unit (SCBU) is hard work. It’s intense. It’s draining. It is NOT where you wanted or planned to be. So any opportunities to make life in hospital more ‘normal’ and bearable must be taken.
For me, taking 45 minutes out of SCBU to go and sit in a coffee shop with a friend/family member and enjoy an iced mocha, a meatball wrap or a cup of tea and cake felt like a huge indulgence. But I think without these trips into normality I would have completely lost touch with reality.
2. Make sure you are being heard – How to talk to doctors and surgeons
I must admit that before SCBU I always thought that doctors and surgeons have all the answers. My experience in SCBU taught me that, although doctors and surgeons are hugely knowledgeable and very skilled in their areas of expertise, they are still human and can’t and don’t know everything. Although they knew a lot, they didn’t know me and they certainly didn’t know how I like to receive information.
As you already know, I am not a shrinking violet. I have even on occasion been accused of being bossy! I quickly learnt that for us to work together to support Mia effectively, I needed to question, and sometimes challenge the medical team to get the information and support I needed. By doing this I was able to play my part in aiding Mia in her recovery and ultimately ensuring that she could leave hospital as soon as she was well enough to do so.
Just 60 hours after Mia enters the world, I find myself standing in the SCBU at 10.52pm on a Saturday night wearing my PJs talking to Mia’s surgeon Natalie. She is fresh out of surgery. At my request, she explains in detail exactly what happened during the surgery. She shows me the X-rays and draws diagrams to help me understand what I am looking at. I think that being armed with this information helped me through the next week of uncertainty.
Natalie goes on to explain that Mia would remain paralysed and have a breathing tube for at least the next five days. This would give her the best opportunity to heal without the risk of moving around.
In this conversation Natalie also goes on to explain that the surgery has gone ‘brilliantly’ in general. She is very pleased to have been able to complete a primary join of Mia’s oesophagus to her stomach (not something the team really imagined would be possible). However, they are concerned that the join is very tight so everything is very stretched. This means that all the team will be keeping an ‘extra special eye on her’. Natalie also goes on to say ‘I will worry about her’, ‘we touch wood that it holds’ and ‘I will keep everything crossed’. In this moment I feel scared, however I don’t feel alone as it seems the surgeons are very much on our side and rooting for Mia.
3. What makes a baby nurse amazing
I quickly discovered that there are two types of baby nurses working in the SCBU. Both do a great job of looking after the babies, but the ones you need to seek out are the ones that will also care for you. In my first days and nights in SCBU I was extremely fortunate to meet the very best of the baby nurses: Emma, Holly and Melody. These three ‘saved’ me more than once. What made them stand out was their ability to recognise that I also needed help and support in order to be there for Mia.
3.30am on Sunday 28th July (Mia came back from surgery 6 hours ago)
I am suddenly wide awake. Even though I only saw Mia four hours ago I can’t bring myself to simply roll over and go back to sleep. I must see her! So I pop on a jumper over my PJs and slowly shuffle along the corridor from my side room to the ward where my baby is in her incubator.
As I sit quietly all alone by Mia’s side, the gentle beeping of machines all around me, I feel a sudden wave of sadness. This is not at all how it is supposed to be. Despite being in the middle of a busy night shift caring for the babies, Holly has seen me arrive. Within a matter of minutes she has worked her magic: a hot cup of tea, a packet of biscuits, and the offer to chat should I wish to. These simple acts of kindness were all I needed to know that although Holly was here to care for Mia, my wellbeing mattered too.
4. Good visitors are essential
I am a people person. The visitors we had during the two weeks spent in the SCBU were, for me, absolutely essential. In addition to supporting Mia and me by giving us their love, hugs and time they also provided me with food, entertainment and quite a few laughs.
If you find yourself in the situation of going to visit a baby in SCBU, my first piece of advice would be to allow plenty of time. The chances are that the parent(s) you are going to visit will be in a constant state of being overwhelmed and so the last thing they need is to feel rushed by a visitor.
Second, give the parent the opportunity to express what they need from you. My visitors gave me lots of practical support which varied from sorting out parking permits, going to a pharmacy/shop and pushing me through the hospital in my wheelchair, to bringing in homemade food for me to eat with them. In addition, there were times when all I needed was someone to simply come and sit with me by Mia’s incubator and tell me what was happening in their life. To listen, and to be transported by their stories to another place far from the reality of my own existence, gave me happiness.
Finally, if they don’t get back to you then don’t be offended. They will most likely have become simply overwhelmed.
The days I spent with Mia in SCBU were some of the most emotionally and physically painful and challenging days of my life.
5. How to look after a newborn baby
Despite all the pain and suffering experienced as a parent who has lived through having a baby in the SCBU there is one massive advantage that I don’t think I fully appreciated until quite a few days after Mia and I had returned home. The support in SCBU that you have on hand 24/7 is incredible.
In addition to caring for your baby around the clock, the nurses in SCBU are also available to support you through many firsts. These included changing nappies, washing your baby, swaddling, dressing, and all the general day-to-day care for a newborn. As a single and first-time mum, this support was incredibly useful. By the time I left hospital when Mia was 18 days old, I had already had access to breastfeeding experts, a psychologist, a speech and language therapist and completed some basic first aid training .
6. The importance of celebrating and capturing every milestone (however small it may seem at the time)
I love to take photos and make ‘movies’. I have always been one to whip out my phone to capture ‘the moment. So when Mia entered the world this did not change. In fact, for the first year of Mia’s life I would say that my need to capture everything increased quite dramatically! Looking back, I am so pleased I did this and photographed and filmed everything as so many of the memories from the time we spent in the SCBU would otherwise be lost.
Growing up, Mia will be lucky(!) enough to have a record of her first poo, breastfeed, the exact moment she turned 1 week old.
From this moment on Mia started her amazing and speedy recovery from her major operation. By the time she was 12 days old she was breast feeding, crying, sleeping, having cuddles with everyone and behaving just like any other baby! Then exactly 18 days and 3 hours after first entering the SCBU, Mia was well enough for us to leave the hospital.