24th January 2020
My First Words: Broken and lost
My journey started out like many who will be sharing their stories of neonates and their mental health for the awareness week, however I figured it was probably time to share mine.
Just over five years ago now, I delivered my twin boys, Leo and Oska at 24+3 weeks and 25 weeks, it sounds a little odd, and it is, my twins were born four days apart.
I guess I should probably start at the beginning really, there’s so much to tell, but equally there’s so much to highlight about my mental health during the last five years which has normally taken a back seat. When I tell the boys’ story, I often tell the bits I am most comfortable with, the medical side of things, it’s harder hitting in some ways, dropping words like ‘cardiac arrest’ and ‘brain bleed’, ‘sepsis and
pneumonia’, and I get to protect myself in the process.
The first real experience of mental health concerns I had was when I was 17 years old. My dad, who had served time in the Bosnian and Northern Ireland wars, had seen and done things he would never tell us because they were too horrifying. His life started to unravel, and he succumbed to what I now believe was PTSD and Bi-Polar disorder and took his own life.
I never really understood why he did it, I was 17 and he had always had these episodes of extreme behaviour, but back then there was nothing for mental health, so we just thought that was how he was. We’d thought about manic depression, as it was then known, but the only comfort we got was from a doctor telling us ‘what was rational in his mind, was not rational in ours.’.
It would be another 10 years before I truly understood why he did what he did, and why he felt so lost, so broken like I had.
Ok, so here goes, a no holds barred focus on my mental health and my neonatal journey, not just my stay, because five years down the line, my son is still on oxygen, still has severe lung disease, still has sensory and attachment issues, and my other son, is still dead.
When Leo died, I can remember vividly disbelieving the situation unfolding in front of my eyes. He wasn’t going to die. I know that’s why I’m here, I know that’s why we’ve wheeled me in on a bed with Oska still snug in my tummy. But this isn’t happening to me. I see him in the incubator, on the oscillator, and I know it’s not good, the staff
have told us what the situation is, there’s a sense of urgency in getting him across to me before he fights his last fight. It’s not happening to me. I know the consultant has just said ‘let’s turn everything off.’ But my son won’t die, surely not. This wasn’t how this was meant to be. And yet, it was. Even curled up in my arms, my tears dropping on his beautiful face, the face I loved instantly the moment I saw it, my love wasn’t saving him.
He fought his last fight and my heart exploded. A bomb had gone off in my core and I had no idea any more about anything. I just felt numb, beyond numb. I was empty, even with Oska inside me, I was empty, and I was alone.
Four days later, Oska arrived. I didn’t want to see him in the NICU, I didn’t want to touch him or hold him. I was terrified he would die too. I couldn’t love him, because that would hurt too much. The nurse on shift that night wasn’t taking no for an answer and she got my hand in the incubator and he squeezed it. I remember feeling a sense of relief that he knew it was me and that we were in this together.
But, as the days went on and the grief came in when it could, the spiral started. I became obsessed with the medical side of Oska’s care, it was safe, it was controlled and I understood it. I could put a barrier up and disconnect from that mother side of me. The NICU became a safe place, a place where the staff knew about Leo, I could laugh, I could talk about anything really, anything but what was happening in front of me. I had this huge wall up. I would come in every day, full face of
make-up, dressed in something nice to sit at the side of an incubator half the day and distract myself.
It was night time I would crumble. When Dax would go to bed and I would be sat on my own, the experiences unfolding daily unravelling in my mind, the grief would seep in and the anxiety soon follow.
I became obsessive. I was obsessed with Oska’s numbers, I was obsessed with ensuring that we were never late for getting up to the ward after tea (which is ridiculous because really Oska had no idea if I was arriving at 5pm or 5:15pm), I became obsessed with ensuring I would ring the ward before bed, in the middle of the night, and again when we got up. If I didn’t do those things I couldn’t cope, I couldn’t settle or relax. I needed control, my life had been turned upside down, but I
needed to regain some control, and I could control this.
I became heavily reliant on Dax, he was three, but he became my rock. I couldn’t hide my grief, I couldn’t hide my anxiety or my often very stressed behaviour because I was so broken. He stepped up, my three year old stepped up. He would wipe my tears away, he would make teddy bear cuddle parties for us to snuggle with to feel better, he started to take care of me emotionally and I felt so horrendously guilty.
On the surface in the NICU I looked like I was bonding with Oska, but deep down I wasn’t. The guilt I held in my heart for his twin brother dying was heavy, I felt so responsible as their mother for all of this. This was my fault and I was holding it together for those hours I’d spend on the NICU each day.
I was gluing myself back together every day with the crappest glue you could find, only for a piece to fall off, or for all the pieces to fall off.
The day Oska came home, I remember feeling so numb. I was sure I was meant to be excited; I was meant to feel relieved, but I didn’t. I didn’t really feel much other than numbness and confusion.
I had this baby coming home, on oxygen, and I needed to be his mum. But my mum mode didn’t switch on. The nurse mode did instead.
Oska didn’t really like being touched, he didn’t really like cuddles or kisses, he didn’t like to snuggle in bed, he was a world away from what I knew with Dax.
I massively misinterpreted this in to that Oska hated me. And it caused a huge wedge. I became his nurse, and he was my patient. I loved him, and he loved me, but there was little affection. And this destroyed me. I wanted him to need me, I wanted him to snuggle me, to want a kiss and a cuddle, to want my face next to his on the bed. But my guilt over Leo and my worry that he didn’t like me because of this chewed me up. It became easier to just accept my role as a nurse as that appeared to be what made him the most comfortable. So I stepped back as a mum.
I had hit a rock bottom point not long after this, being at home was isolating, it was hard. The pressure of having this baby who needed a lot of looking after medically was astronomical. How was I, just me, Lottie, meant to know what I was looking for? I completely missed the signs of Sepsis, but I knew he wasn’t right. That hospital admission finished me off.
I was just getting through the days, the motions, I wasn’t really me anymore. I wasn’t really anyone. I just existed.
My mum, who never really believed in antidepressants forced me to the GP. She knew how broken I was and was powerless to help me. They said it was grief.
I rang this number they gave me for counselling, broke my heart down the phone to the receptionist and explained I had a baby on oxygen, and I would need to bring him with me to my sessions. I was obsessive at this point over no one caring for Oska but me.
As a side note, I had and did become unreasonable about other people helping with Oska. I needed control desperately and my demands were often unrealistic. It was one rule for me, but 50 for everyone else. If I couldn’t be with him, even if just for half an hour I needed control, because everything else was out of my control. I also ended up
with separation anxiety, heaven forbid anyone was every five minutes late. I just couldn’t cope.
Back to what I was originally saying…
Being told because one of my children survived meant he couldn’t come to counselling with me was like a shot gun going off. I explained I needed him with me but was told he was too triggering for others who had been bereaved and therefore if I didn’t leave him with someone, I couldn’t have any support.
I was broken.
I was started on antidepressants and started seeing the hospital counsellor.
It was during this time that Oska became critically ill and my mental health took a different turn. Muted a bit by the medication and having the ability to chat to my counsellor had started to alleviate some of that pressure I was feeling.
Over the course of the next three years I would witness my son on life support a further three times, and countless hospital admissions for respiratory problems. I would see myself become an absolute expert in everything about him medically so that I could be part of that team he needed to save his life. That’s where my focus shifted. I felt
oddly comfortable in those situations, the more critical he was, the easier I found it to disconnect and become engrossed in his numbers again. Offering up vital nuggets of information which could help save his life. I did save his life.
This is when, I think the PTSD crept in. I became so very good at throwing myself in to situations when Oska was sick that really, I probably shouldn’t have. I would stay for intubations, even when he was critical, I would ride in the ambulance, each time focussing solely on his numbers, I would stay for extubations, I would stay for every single mortal procedure, I would hold him down for cannulas and I would carry him to surgery. Each time, rarely if ever, shedding a tear. But
none the less, I put myself in the firing line. I became so good at hiding behind the nurse element of this life, that I found my time in hospital easier and easier, and it just became normal. I even enjoyed PICU. No one enjoys their child being critically ill, but he wasn’t my child in there, he was a patient and I was part of his team.
And then it would hit me, weeks later, and usually just as another admission was looming, so it would get pushed to the side, out of the way, and nurse Lottie came back out.
It caught up though. It caught up big time. The triggers of hearing an oscillator would make me want to physically vomit, I would sweat, I’d start to suffocate and like a film reel behind my eyes, it would play out.
I’d see an ambulance with it’s lights on drive past (on Oska’s first PICU admission he was blue lighted up and I followed behind in the car, not knowing if he’d make the trip) and the sweating would start, the crying, the hyperventilating and ultimately a panic attack.
I’d hear ventilator alarms on medical TV shows (because this became a comfort for me too), and I’d feel uneasy, the more they played in the episode the more tense I would be.
I was a mess, a huge mess. I didn’t know who I was anymore, I certainly wasn’t the same person I was when I was wheeled in the NICU, I wasn’t the same person after each PICU admission, after each ambulance ride, after each and every flashback.
I tried working out who I was with friends, with my family, with my therapist (who by the way are all absolutely amazing) and the medication.
I just was lost, so lost and so broken. There were days when the pain was so bad, I didn’t want to be here anymore. I wanted to just be gone, and I understood the dark place my dad had got too and why PTSD ravaged him the way it did.
As things calmed down at home, and Oska relied less on hospital admissions I started to realise just what the hell had gone on, the devastation it had caused to me, to Dax, to Oska. Our unit wasn’t a unit, we were all affected.
Dax and I had both been through therapy, Oska I’m now learning has sensory and attachment issues, and we needed fixing.
At the back end of 2019 I embarked on EMDR to help me cope with all of this. It was not pretty; it was two and a half months of absolutely horrific times. Reliving absolutely everything, things I hadn’t even thought of in years were suddenly back.
But, it fixed me. Sure, I still have anxiety, I still grieve, I still hurt over what happened, and what’s still happening with Oska, we have a very long road ahead of us now. And I am sure my mental health will always need support, too much has happened for it not to. I’m ok with that.