Forewarned is forearmed
Well folks, September is Neonatal intensive care unit (NICU) awareness month and though I have left it to the usual 11th hour, I felt unusually compelled to share a little of my own experience on the subject. Forgive my ramblings but please do remember that this is just as it says on the tin – my experience and is not meant to be a representation of NICUs in general nor other’s experience of them.
I am ashamed to admit that prior to my gremlins fairly extensive stays in the NICUs of Greater Manchester, I had no idea that they existed which is an awful thought considering how much I came to rely on them. I was woefully under-prepared and seriously overwhelmed. I am fairly certain/hopeful that things will now have changed for the better but when I was first pregnant, NICUs were an enigma. Even when it was pretty much a given that L would be prem, I still wasn’t introduced to the concept…which I can say undoubtedly would have helped prepare me emotionally for what was to come. Instead, following her birth I was taken to a ward full of new-borns and their exhausted yet ecstatic mothers (an act I can only now look back on as cruel given my marked lack of Bebe), and handed a portable DVD player with a generic and horribly shot public service video about the role of the Neo-natal intensive care unit – which I was told I must watch before being allowed to visit/meet my own child.
Isolating doesn’t quite cut it, but it does go someway to explaining how out of touch I felt with my baby and how guilty I felt for having to leave her in the care of others because I felt that I was not prepared enough. I appreciate that I am projecting my own traumas here however, I now also know from my own experiences both as a parent and volunteer, how important being forewarned and learning from experience is. It is the key to unlocking a lot of things in NICU-land and ensures that you are able to play a fulfilling and meaningful part in your child’s early days, advocate for them and feel like you are a parent even when you are relatively detached compared to the experiences that other new parents may be having. I have recently been toying with the idea of becoming a volunteer again and if I do, being a source of support to parents and families of babies in the NICU will be paramount. Whilst I hope it goes without saying that volunteers are not and should not be considered medical professionals in anyway, I am hoping that having someone nearby who can at least emphasise with the situation, in collaboration with the support offered by the doctors, nurses, consultants, health care advisors, community nurses and assorted other angels involved, will help a little.
Awareness is king and neonatal care is not something that should only be talked about in hushed terms.
Adjusting
From the outside looking in, NICUs can seem crazy, chaotic, noisy, scary places but once on the inside it was genuinely amazing how quickly my perception changed. Yes it was noisy, but I was surprised at how quickly I could detect the subtle differences in the (many) beeps omitted by the machine’s that L was attached to. It can, and did feel like sensory overload at times – the machines and wall of sound created by them was relentless but we discovered that they do have volume controls and I did get so used to them that eventually they became a source of comfort – a strange NICU lullaby for adults and babies alike. I guess, I became quickly institutionalised – the silence of home scared me more than the noise – a difficulty that I know is faced by many neonate parents… Once home, how would I know if either baby had stopped breathing without an audible signal alerting me? I know this may sound ridiculous but after months you can come to rely so wholly on the equipment it can be very scary to ween yourself off it. In this vein, let me just stress here that post NICU support is, as invaluable as the care you receive whilst your baby is resident.
Whilst strangely comforting, the equipment could also seem intimidating and restrictive – an active and physical barrier to my being close to my baby, but with time and help I soon got used to navigating the spaghetti junction of wires and tubes that she was attached to and then got to celebrate the little (okay massive!) victories that came along with witnessing each of these wires slowly being removed over time. It took months and nothing would quite make my heart sink faster than coming onto the unit to discover a new canula, wire, tube, central line had been added or re-instated, but she made it eventually. To NICU parents the word “wireless” carries a whole different meaning and one that brings with it the freedom to bond – to pick your own baby up, change a nappy or give a feed. For the record, I am still unable to listen to the Athlete track “Wires” without crying.
There were many tears (mine) and temper tantrums, (mainly mine but sometimes the babies) and MANY days where I struggled to cope with the incredible curve ball that life had thrown us. I went through a long period of resenting the place just as much as I cherished it.
There is just one moon and one golden sun….
According to Mickey Mouse and Friends its a small small world, and I can confirm that during our time on the unit the world definitely shrank and everything became miniature for a while. Little fingers and toes were VERY little, hats made for tiny dolls were too big, weight was measured in ounces, milk in millilitres and every ounce, ml or gram counted. Progress seemed small (the week L put on the equivalent of a bag of Pom Bears was a particular milestone), but I guess it’s all relative when you only weighed just over 1kg at birth. One thing that was guaranteed though was that the staff were in our corner, celebrating every single victory or commiserating each disappointment with us. Its been almost 13 years since L’s time in the NICU, nearly 9 since X’s yet I am still blown away by the incredible capacity that the people working on these units have for showing care and compassion not just the babies under their charge but also their parents and extended families.
Over time, we did form deep bonds with the strangers that kept watch but it didn’t always come easily. In the early days L had 1:1 care – a singular nurse who’s job it was to sit at the end of her incubator, meticulously recording her every move. This level of care brings with it a certain intensity that as a new parent who has no idea what they are doing, can be hard to bear. I remember thinking to myself that she would surely step away in minute, leaving me to my thoughts and to be with L in peace but that’s not how this worked. It felt intrusive, I felt like I was being judged – for the way I sang to her, the way I held her teeny hand through the porthole in the bed whilst trying not to dislodge any wires, or for getting upset, but hindsight is a wonderful thing and I can see now that this wasn’t the case – they were just trying to do their job.
With each new change of shift though came a new set of people to get used to which hit hard, as did the difference in the daily routines that comes with moving from room to room in the NICU or even hospital to hospital – from 1 on1 intensive care, to high dependency to “rooming in” where you get to spend a whole night in a fully medically equipped room just off the main ward to experience being a parent for a whole night, safe in the knowledge that the nurses and doctors are just a step away if needed. Just when you think you had it all figured out something would change and round and round you’d go. It all takes adjustment and resilience and time when you feel you have nothing left and are eager to start the life you dreamt you would have with your baby.
Getting back to the small world analogy, I was told by a NICU nurse years after the fact that some of the babies that pass through the unit stay imprinted on the minds of those who had a hand in their care. The nurse who told me this was a mother herself to a beautiful young girl who had also spent considerable time in a NICU and who later turned out to be my daughter’s most dear friend. In a fantastic stroke of serendipity, it turns out she had cared for L throughout her stay in one of our local NICUs but as she often worked night shifts when I had gone home to sleep we were only vaguely cognisant of one another’s existence until the girls started school. I am now, pleased to count her as one of my most special friends. She no longer works in neonatal care due to the demand of having four children of her own but often comments on how much she misses playing such an important role in the lives of the many families passing through the unit.
Coping
A lot of people have commented on how I always seemed so put together in the hospital – that I looked like I knew what I was doing and made it look easy but this is far from the truth. There were days I hadn’t showered or eaten anything but Cadbury’s crème eggs for days, days I obsessively rang the hospital 3-4 times in the small number of hours I spent away from the unit to check on her, days I ranted and raved and cried and stamped my feet at the injustice of it all. How I did get through it though was by taking back control of the things I did have some influence over and the amazing staff helped me a lot in this respect. I needed and wanted to feel like I had purpose and a part to play and of course I did but I didn’t know what the rules were about what I was allowed to be involved with and what I wasn’t. Once I had voiced this though, the staff did an incredible job of ensuring that I had agency and a voice in my children’s care. Under the watchful eyes of the patient angels, I learnt to do Lily’s cares – I learnt how to bathe her in within the confines of her little temperature controlled terrarium, how to cut and fit colostomy bags so they were an exact fit over her stomas, how to give her milk via her NG tube and countless other things and it gave me the confidence I needed to think that maybe little old me, who still cannot keep a house plant alive for longer that a month, may fare better with an actual human being.
I read a fact today that stated that in the UK roughly 90,000 children receive care in a NICU unit each year. What an incredibly high number that is! If you are a parent to one if these children, my heart goes out to you. I can only imagine the journey you are going through – because I can guarantee that whilst there may be similarities, it will also be different to my own journey in so many ways.
I send you so much love and strength and pray that better days come soon for you soon. Try and put your faith in these incredible places and spread awareness of the incredible work they do.
Hope springs eternal.
xx
thelilylog 