'If all you do today is remember to breathe - then that's OK'
I remembered this mantra I used to whisper to E - to her face in the day and in my head every night before I attempted to sleep, every day that she was in NICU. I remembered it because I had one of those heart stop moments the other day where I thought she'd stopped breathing again.....
She was sat in the kitchen watching Peppa bloody Pig, I was pottering around as I do, bit of washing up here, cleaning up there, when I realised I had not heard her for a few minutes. I looked around and she was so very still, I rushed over to look at her and a million things happened all in one split second;
I wondered why she was so quiet
I immediately thought the worst
I saw that her face was glazed over and she looked vacant
My heart shot in to my mouth and my chest did that 'flip' it does when the adrenaline starts
I lost my breath
I shook her and shouted .............
and she looked at me like I was out of my mind.
She was having a little day dream bless her, and I shit all over it.
It made me realise that I don't think that feeling will ever leave me as a premmie mummy - that fear, that horrible inner fear that one day she will just forget to breathe again. She was extremely good at it in NICU!! She had multiple apneas every single day from day 4 to around day 40 - we even had an 'apnea diary' to record details of each one. Every morning we'd get to NICU - praying this was the night that she had been 'apnea free' - no such luck. It was the only thing that kept us from home - I do believe she would have been one of those discharged 35 weekers had it not been for the apnea issue.
Being reminded of those fears and feelings again is quite timely for my latest venture. It is soon time for another round of 'Bake for Bliss' - a chance to bake and eat cake, drink coffee (or perhaps bubbles!!), and raise as much money as we can for Bliss and NICU. This year - having moved 200 miles away from 'our' NICU, I will be donating to my now local NICU.
What I'm not interested in however, is having my donation swallowed up in to charitable funds, with the vague promise of it going towards a new incubator in 2025. The most important thing to me in NICU - besides the babies, are the parents. How I wish I'd had more support during our time there. Of course I had the other parents - but as I have mentioned before - this bond did not really happen until we were all home, and out of the woods. While in NICU you just walk around in a bit of a daze, exchanging niceties with the parents. But I had no one to confide in and tell how absolutely devastated I felt. No one to tell how I completely and utterly hated myself and my ridiculous body for letting this happen to my baby. No one to tell how the very real risk of brain injury made me look at her a bit differently - and re-assess everything I thought she would be - and feel sick and guilty about it. And when I had my first freak out and flashback - instead of being looked at strangely by the doctor as I had a small panic attack in the corner - what I really would have liked would have been someone to tell me it was OK, it was normal, and it would more than likely need treating at a later date.
One of my fellow NICU mummies does fabulous fundraising for the NICU with some amazing innovation to help the parents' journey - so I'm taking my lead off her. Thankfully, it has been well received at my local NICU, and I have a meeting with the sister in charge this week to discuss my plans further. She's eager for me to also be Bliss volunteer - hanging out in the NICU once a week or so, just to be there for the parents to chat to - to show that you can indeed come out the other end, a little bit scarred, a little bit different, but living, and enjoying my beautiful baby girl. Perhaps in the middle of a crucial time in my masters degree, while trying to hold down two jobs and be a fabulous mummy, and still recovering from my breakdown - it may not be the right time - but it's certainly worth thinking about for the future.
The Bake for Bliss plans are going very well indeed so far. My sister has thankfully taken the lead (I may have planned this in the middle of two of the busiest months ever ever ever!!!) - and appears to be some sort of events planning extraordinaire! We have loads of fabulous raffle prizes, cakes, decorations, guests - and that's just the start! So we are hoping to get a fabulous amount for both Bliss and the NICU.
As for me and my recovery - I am still doing really well I think. Flashbacks are still very much a thing of the past. Anxiety still rears its head every now and again, particularly when I have a big to do list. I just have to keep remembering the words of my crazy fabulous auntie - 'you can't eat an elephant in one bite'. Songs on the radio last week caused me to cry and be transported back to July 2015, but after a chat with The Husband I seem to have got on top of that wobble. And I still speak weekly to my fabulous midwife, which is a comfort in itself.
And my little super prem - she is utterly fabulous. Turns out the weird stuff on her brain scans must have been some kind of artificial intelligence - well that or the extra toe! She is unbelievable - smashing milestones like they are just boxes to be ticked. She can currently count to 30, knows the full alphabet and at least two words that start with each letter, she knows every single colour including the most recent - 'teal' 😂😂. Speech wise she is stringing short sentences together. She has memorised er favourite books and therefore reads along. I feel there is literally nothing this girl cannot do. Smashed it from day one, and continues to do so every day since.
For some people the journey ends at the doors of the NICU. For me it has been a life changing journey that will continue to shape my life and make me who I am - warts and all. And all I have to do is remember to breathe............