I was about to embark on what I knew would be a rocky road. I can now almost snigger at how unavoidably ignorant I was to the weeks ahead.
Harry had been premature but at 33 weeks, his three week stay in SCBU turned out to be a walk in the park compared to the experience we had with the twins. Not that any special care admission is a jolly holiday, it’s far from easy whichever route you take.
Seven years ago today, about now, I was laying in my hospital bed, having my last scans and CTGs (tracing of babies’ heartbeats) as the next day was D-Day. The twins were hanging in there, yet poor growth of one and a bit too much growth of the other meant the time had come for them to be served their eviction notices. It was time to come and meet me, the one who had grown them, (albeit I was really quite terrible at this pregnancy lark and biology determined that I hadn’t managed to keep them safe and tucked up in ‘Casa Utero’ as long as I would have hoped for. My body sucks).
This time in my life was a difficult one, as I was relieved the twins had held on this long yet I was fearful for their early arrival. I knew they would be held in incubators rather than in my arms, and I knew for many weeks to come I would be sleeping alone without them by my side. What made things harder was that I was miles away from home, in London, as I had been transferred to another hospital due to lack of space in any Neonatal Units locally. I missed Harry, my family and I was scared.
The next day, 26th November 2009, the twins arrived. Times were 16:16 and 16:19. Together for so long inside me and from that moment, they started their very individual roads to survival. Taken from my failing uterus at a difficult caesarean section, they were whisked away from me in a brightly lit theatre, put in little plastic bags as the teams of medics helped them to breathe and to keep their hearts beating. They were taken to Intensive Care, on the other side of the hospital. Without me having even a glimpse of their faces, they were gone.
You know the rest. It turned out I was right to be scared, yet in a million light years I never realised how my fears would turn from worry to gut wrenching pain. Over the next weeks, until Zach came home as a NICU graduate to his brother on 12 February 2010, we batted away many problems tiny premmie babies face. We were blessed that they survived them all.
Apnoeas, bradycardias, jaundice, worries over gut disease, feeds starting….feeds stopping….feeds starting, cannulations, blood testing, blood gases, charts, alarms, keeping vigil, brain tracings, lumbar punctures, MRIs, skin breakdowns, long lines, infection, head scans, brain haemorrhages, Group B strep, meningitis (x2), gut bleeding, ventilation, CPAP, oxygen, chronic lung disease, pneumothorax, resuscitation. Tears.
They were transferred to our more local unit in ambulance transfer, Reuben at 5 weeks and Zach at 6 weeks. For that one particular week I had a baby in London, a baby in Portsmouth and Harry at home. And then it snowed. A lot. The world was testing me and things were sent to try us.
It took me a long time to try and come to terms with everything that has happened. It many ways, times are still challenging now. What I would say is that they don’t necessarily get easier, they just change. However, things can never and will never be so raw for me as they were back then.
The events of the last few years proved very damaging. In the thick of the early days we were warned that we may have arrived in London ready to have two babies, yet may return to Portsmouth with none. Their survival was becoming less likely as brain bleeds and infections took hold, and we had ‘that conversation’ about resuscitation and what was the kindest thing to do should that be necessary. No parent should have to have ‘that conversation’. There was a huge amount of mummy guilt that I carried, that they had arrived early as my body could not keep them safe before birth, and yet I couldn’t keep them safe after birth either. The odds were against us, as I watched medics try to sustain their lives whilst all I could do was to sit alongside them and pray, hope and will for the best.
When you have this much heartache, when you have truly traumatic events, they can haunt you. The years after their birth and as I raised them, waiting to see what damage the events of prematurity had caused long term, I had to admit it had hurt me. It had hurt my heart but had also hurt my mind.
I was diagnosed with PTSD, Post Traumatic Stress Disorder.
There. I said it. It’s nothing to fear or to be ashamed of. I wear the wounds of a hugely terrible time and I faced them. Mental distress is frightening and lonely. I was affected by nightmares, by flashbacks and by triggers, including a particular song and a particular shower gel smell which I associated with the hospital ward. It was enough to make me completely lose my head in Superdrug, in public. The physical affects of a trigger were too much to bear. Even now, despite coming through it after treatment, I still can’t smell satsuma shower gel.
I often wonder what would have happened if I hadn’t have dealt with this head on. I am lucky to have a wonderful GP, a fantastic group of friends and my family….well, if Carlsberg made families…..
I still have times, especially at this time of year when I struggle a bit, but I learnt tactics and coping mechanisms through the psychotherapy that let me deal with these and cope.
We should be talking about mental health. We should never fear to admit we need help. We should talk; talk and not be ashamed or worried by what others may think. It’s not a tabboo subject. It’s real. It’s happening to many many people around us. Some of who are reaching out for help, yet we can’t see it. For me, it was consuming me as I struggled to deal with the traumatic events of the past and I lived under the darkness of the ghosts of NICU and the cards we were dealt. I wanted rid of the pain but I didn’t know how.
There are no time limits to distress, but when the twins were three, I realised I needed to put my demons to bed. I couldn’t do that alone. Yet it took me three years to do so.
I am fully aware how there may be many people who have experienced the NICU journey, or a premmie or poorly baby. I am aware how it affects many many people, each day, in different ways. We all go through things at different paces, on different paths. Some find it easier that others, but just because they may be smiling on the outside doesn’t mean they aren’t breaking on the inside. I was known to get up each day, put the lippy on and carry on. What I was disguising was deep, internal anguish and pain and it needed to be addressed.
I am glad I did. I’m glad I talked. ‘It’s good to talk’. On the eve of the twins’ 7th birthday, it seems appropriate to talk. I did this when I was ready and when the time was right. It helped me to recognise that things were not my fault, and it changed the way I viewed things. It helped me to gain perspective to carry on. I recognised the triggers – one I faced, yet one I just chose to block from my life. I took control back. I looked after myself and my mental health, where all I had been doing before is blocking out the pain to keep the boys well and in doing that neglecting myself.
There are times ahead that I know will prove challenging for me as I make decisions about the twins and their lives. Yet putting to bed the demons of the past is a tool I have used to carry on and be in a strength of mind to cope with those decisions. It’s not an easy thing to do, and I had to summon up some pretty big balls to do it, but in a safe space help is at hand, should you choose it’s the right time to try.
So there, I said it. It takes guts to admit these things but maybe admission that those who seem to be coping the most, are actually struggling in their own ways. Maybe it will encourage others to speak up and confide in someone close. To talk. No one has to be alone.
Zach and Reuben are 7 tomorrow. In that old cliche, I don’t know where the time went. Some passed in tears of a stressful haze, some passed in tears of absolute joy. As time goes on, the balance of heartache and tears has shifted towards more smiles and pride.
Tomorrow we shall blow out those candles on a very impressive Paw Patrol cake (not made by me I should admit – Mary Berry would cringe if she saw my attempts at baking) and I feel, for the first time on any of the 7 birthdays they have had, that this one will not be shadowed by flashbacks and sadness. Time is a healer. Talking is a healer. I shall help them blow out their candles, feeling lucky for my lot, ready to face the challenges head on, to face the future and not live in the past. I shall make a wish – that they will be happy and healthy.
The twins took my by the hand and led the way into a confusing and worrying world, into a ‘club’ which we didn’t know we were joining. We have taken things in our stride and with help, we are succeeding slowly.
My boys are survivors. I love them and I adore them. I will always fight for them. I’m proud of them and I’m proud of the way we have done this all together.#TeamSmith Maybe my boys aren’t the only survivors around here……