There is not enough support for families who have been through a birth trauma.
September marks the beginning of NICU awareness month. I like to joke that for many families like ours, everyday is NICU awareness month.
You leave NICU, but it truly never leaves you.
I realise this isn't the sunniest of topics to discuss, however I feel that by opening a dialogue about how things affect us... we pave the way to a future of understanding and maybe even recovery.
There isn't a day that passes where I don't think about those days. There isn't even a trigger, it literally consumes my every thought some days. I view it now through a blurry memory.
We had endured such trauma when Amy was born that I know I never truly took in what had happened. I still struggle now thinking about how back then I didn't fully appreciate the enormity of the situation.
For those not familiar with our story - Amy was full term, went into shock when I was in labour. Was born via emergency c-section with no heart beat.
She was resuscitated, and ventilated and sent for cooling therapy. She sustained a severe brain injury which 5 years on manifests itself as GMFCS 5 dyskinetic/athetoid cerebral palsy. She spent almost 6 weeks in hospital between NICU and the neo natal ward in 2014.
For me, I think I will always grieve what the NICU journey took from me.
We didn't get to hold her for days.. and when I did I was terrified I'd break her or pull out a probe/tube. I didn't get to breast feed her. When I returned to my room I walked past mums who had their babies by their side in a little cot. The anguish is real.
I am not sure what sort of support is needed for families, I just know that I felt hopeless.
Like I was floating around lost in space, terrified and confused.
Equally I feel that the dads are so often overlooked too.
There were times where no one would tell Phil whether or not Amy and I were even alive. He had been bundled into a room on his own left to deal with the situation. I can't even imagine how he must have felt.
A few days ago I was in the garage digging out the halloween stuff. I know I know, summer has barely finished.
But I do love Halloween and I knew Amy would be excited for the annual appearance of Mr Pumpkin (he sings the monster mash and spins round, she loves it. My dad bought it for her.)
As I rooted through the boxes I happened up on one named "Amy's baby stuff." I don't know what compelled me, but I ignored the comically named "this is Halloween" box in favour of revisiting some painful yet also happy memories.
After an initially freak out about the spider webs I was now covered in, I poured out the contents of the box. I let out a small gasp of wonder at these almost forgotten artefacts. It has only been 5 years but children acquire so much stuff you sometimes forget what they used to have.
There it all was. Each item a memory. I picked up every item and gave each thing a few seconds thought.
The jumpers knitted by a friend and ex colleague. The babygrows Grandma June got us for NICU when we realised we had no clothes with us. The gorgeous dress she wore for a family christening that was sent from our friends in America.
The little shoes Phil bought before she was born... how we laughed at the cuteness of them. The many... MANY rock n' roll/punk themed vests. I could go on, but I won't. I was aghast at the tininess of the clothes. Was she ever really that small?!
It was then that I stumbled up on a smaller box. I remember being given it on the neonatal ward when Amy was to be discharged after 6 weeks.
In my confusion, at the time I couldn't understand why on earth I would want to return home with probes, a cpap hat, hospital bands and a blood stained cloth. Why would I want these symbols of the trauma we had endured?
Was this a sick joke? I treasure this box now and feel silly to have ever thought badly of it.
Sometimes at night as I try to close my eyes and sleep, I remember the exact sound of the beeping. I didn't know what any of the beeping meant, I had no idea.
If people rushed over then it was bad. If they didn't I panicked that they hadn't heard it and that she was going to die.
I remember the nights in my bed in hospital staring at the wall. Staring at the dandelion stickers and wondering was there someone on the other side of that wall also staring, also wondering why this had all happened to them.
Phil and I were visited everyday by my parents and his mum. We would sometimes all cry together and discuss how the day had been.
Or we would become somehow delirious in our fatigued traumatised states and all end up laughing hard. We would finish laughing, let out a sigh, and sometimes weep quietly. It was bizarre.
We experienced the full spectrum of human emotions on a daily basis.
We would high five, celebrate, have a group hug at the news our child's bladder worked. We would slump down to the ground crying when we are told she had started breathing for herself a bit but then stopped again and was needing intervention.
Every bit of information I was given didn't sink in. "She's having an MRI today". I didn't even know what that meant. I just knew it was good she was stable enough to leave the room.
I just put all of my trust into these incredibly skilled doctors and nurses. They knew what they were doing. I wondered how it felt to be them, to see all of these poorly babies fighting to live.
Their parents and other relatives distraught. Most of us probably never even knew what NICU was.
How did the medical team cope under such stress? Did they block it out and become numb? Or did they get invested and take the weight of the emotions home with them? I am sure they get regular input from psychologists or counsellors, but even so, I am truly in awe of the people working in this field, and more grateful than they could ever know.
I'd love to hear the stories of others that have been in the NICU, and also how that journey has changed you, and if you sought help with the grief/PTSD.