As a mum to premature twins born at 31+2 I have always read people’s round ups of their babies first year and found very few similarities to my own experience. From the very beginning with the birth and memories of bringing your baby home to milestones, health worries and your emotions, the entire experience is different to what you ever expected before the premature birth of your baby. We thought our ‘preemie’ journey was over when we were discharged from NICU but what we learnt during our twins first corrected year is that the preemie journey is in fact just beginning when you get discharged and its effects both large and small reach further than we ever considered.Babies first year, the preemie version part two. You can catch up with part one here.
Month three (April 2015) eat, sleep, vomit, repeat
People often say that you shouldn’t be surprised if you get your baby home from NICU and discover they weren’t actually as good at sleeping as you thought and this was certainly true in our case. The boys were awake pretty much all night long either feeding or in pain from reflux but miraculously when the sun came up they slept soundly all day. Mummy on the other hand couldn’t as from 5.30am every day I had to entertain a potty training two and half year old who had decided now was the ideal time to give up naps.
Sleep quickly became a distant memory and I surprised myself at how well I coped with exhaustion, looking back at photographs I was an actual zombie living on coffee and not daring to sit down in case I nodded off but at the time I felt ‘fine’. I slept on the sofa with the boys in their mosses baskets in an attempt to stop them disturbing my husband and son, for babies who had not long learnt how to make noises they had developed one hell of a set of lungs and when they weren’t crying their grunting and breathing was enough to keep anyone awake. I existed on three one hour blocks of sleep per night, I once kept a tally during a particularly bad spell of nocturnal behaviour from the boys and in four days I had slept for just ten hours.
As well as lack of sleep which is something all parents have to adapt to I was also adjusting to life outside of hospital. Without a monitor I worried constantly about episodes of apnoea especially in twin one following his RSV battle, I monitored their temperatures regularly through fear they could become hypothermic like in March and although natural and something I had yearned for it was also strange having no nurse to consult about feeding patterns and how many mls of milk to give. If there is one thing that stands out to me though from those early weeks at home its reflux!
You don’t have to be a preemie to get reflux but I’m yet to meet a preemie who didn’t have it or a similar problem. The boys never suffered with it in neonatal but as soon as they were home it raised its ugly head and I’m not talking a bit of sick after a feed, I mean full on projectile volcano style sick that would go so high in the air you could see it rise above the rim of the mosses basket and fall back down covering the boys faces. This happened every single time I laid them down regardless of the position I fed them in, how long I burped them or how long I sat them up for, they would doze off for ten minutes then wince and scream in pain and whoosh out shot the volcano of sick. They would cough and splutter and cry out in from the burning vomit, it was horrendous, Gaviscon made little difference and so they spent around three months suffering.
April was a cycle of feed, burp, vomit and repeat, but at least they were home, at least they were safe and so I spent April learning to care for them alone, make crafts with my eldest son, starting my blog and drinking A LOT of coffee.
Since the moment the boys were born I felt a brick wall come down in my mind keeping my emotions trapped behind it so that I could function through the trauma of everything that was happening, I had to keep going for so long, through so much fear and sadness that in the end the inevitable happened, the moment I felt secure in the cocoon I had built in our home, the moment I felt reassured the boys wouldn’t catch RSV or end up in intensive care again, the moment I felt safe and like I was allowed to start enjoying my new miracle babies the wall my mind had built solid to protect me came crashing down.
I sat one afternoon in the warmth of the conservatory my eldest son at nursery and my two beautiful babies in front of me asleep in their bouncy chairs and for the first time I felt the overwhelming all-consuming love that makes your insides glow and tingle with happiness. I had loved my boys since the second they were conceived, I had fought for them through their 50% success rate Monochronic Monoamniotic pregnancy, I had been their constantly through every battle in NICU, every test and moment in intensive care and I had cradled them and nursed them and sang to them since the second they came home but only now four months after they were born did I feel the indescribable bond and love that I had been waiting so patiently for. I sat and cried with happiness and love and pride for my boys but the more I let emotion seep through the cracks in the wall in my mind the more my tears turned to tears of trauma and pain and sadness. It’s hard to describe what I felt but as I sat bathed in the warm sun light engulfing the conservatory my mind was back in NICU, I was living every moment as thought it was just happening and it was as real to me as the sun on my skin.
I sat and cried for everything I had missed, everything we had been through, everything the boys had experienced, I cried from the deepest darkest pit of my soul for every single thing I had been unable to process until this moment and I was paralysed in a frantic state somewhere between the present and the past. I sat like this unable to move for hours and when I finally managed to bring myself back into the here and now I had no idea what had just happened to me. Luckily the boys had a routine doctor’s appointment the next day and when the doctor happened to ask if I was OK I broke down, she told me it sounded like I was suffering from a form of PTSD (Post Traumatic Stress Disorder) that seemed ridiculous to me, I wasn’t a soldier, I hadn’t seen anything horrendous or feared for my life, I felt unworthy to even say the word PTSD in association with the ‘little’ I had been through compared to war hero’s and so I kept it between me and my husband.
The flash backs continued for a week or so but every time I cried and processed my emotions from the trauma I was reliving I felt a little more whole again and little more alive. I was fortunate that for me this brush with a minor form of PTSD was brief, I still thought back to what had happened for a long time but not in the same raw transporting way.
Many people would think like I did that PTSD is only associated with soldiers and that what they had been through was nothing in comparison, but what I have learnt during the last fourteen months is that as parent to preemies we cannot and must not underestimate the trauma and impact our experiences can have on our lives and mental health. We have feared not for our own lives but for our children’s lives, we have endured separation and helplessness unable to protect the person most precious to us, we have witnessed medical procedures and near death experiences, we have continued to function to maintain a ‘normal’ life for our other children and families, we have been through so much putting ourselves last and pushing forward to the end goal of taking our babies home, we are unbelievably strong and have endured more than we probably ever thought ourselves capable of, we must not belittle the fight we have fought or the impact it has had.
Join me next week for part three.