Machair’s Story - Nuances of NICU
The NICU world was a world I was thrust into at 100 miles an hour without a chance to pause and catch my breath. My baby was born premature. I knew that babies could be born early but never did I ever even pause to think that MY baby would be born prematurely.
My pregnancy was plagued with worry from the outset, the fear of losing a baby was compounded in me since I was a little girl. My mother had suffered the loss of a baby due to a Placental Abruption. Without realising it or knowing it there was a trauma from this event which had stuck with me all these years. I saw the devastating loss my parents suffered, the fear was ingrained in me, some would say irrationally, but it was there, the fear that something awful could happen to our precious little gift. This overarching fear made my pregnancy difficult to enjoy, I was afraid of every little hiccup we met along the way.
My fear was NOT unfounded. something did go wrong. it went catastrophically wrong.
I too, like my mother, suffered a Placental Abruption 300 miles from home. 2 hours from the nearest hospital equipped to deal with the seriousness of the situation. As much as I knew what an Abruption was and what the devastating consequences could be – I was not prepared for the crushing blow of it actually happening to me. In that moment all my fears were realised. I have never felt so alone. I knew something was wrong, but I also knew it was completely out with my control and I had to put my trust in complete strangers in the hope that both my baby and I would survive.
I was Blue Lighted up North and after a gruelling 20hour labour delivering a Back to Back baby that my body wasn’t ready to deliver, Machair Gray Ballantyne was born. He weighed 2.16Kg – 2 bags of Sugar!
There was no time for skin to skin or photo taking, Machair was rushed to Neonates and I was rushed into surgery with heavy bleeding. I remember the noises and the room like it was yesterday, I remember constantly watching the door in the theatre being terrified that somebody would rush through to say that our baby hadn’t made it, I remember the one nurse who saw my fear and came to hold my hand – she asked me his name. Made him feel real and reassured me he was in safe hands. I remember watching the board where they were keeping track of my blood loss and the units mounting up – I don’t remember anything after that – I blacked out.
I woke up hazy the next morning, unable to move, Machair's Neonates doctor was stood over me. My heart raced – I thought this was it – but he smiled and said you have a tough one! He told me Machair had had a difficult night, that he was struggling to regulate his temperature which was causing him difficulty breathing they were worried about sepsis so started antibiotics and his Bilirubin levels were high. I could not process the information. I burst into tears – he reassured me and said he was in safe hands. I was in HDU I had to wait hours before I was able to see my baby for the 1st time – Iain had to point him out – I had no clue which baby was mine – I felt like such a failure – how could I not even recognise my own baby, what kind of Mother doesn’t know their own child. I held him, I felt detached, overwhelmed, I felt an overwhelming paralysing wave of guilt sweep over me.
The Guilt hasn’t left, a year later I still feel it – it’s like a dull ache now, more manageable.
Our NICU journey was a blur, with both Machair and I being ill and Iain having to be strong and present for both of us. We moved between hospitals and at the time my full focus was on Machair and not mine or Iain’s needs. With hindsight, looking back, I wish I had connected with the other parents on the Unit – it is only retrospectively now I am so keenly aware that the other parents on the unit were feeling the exact same way that Iain and I were feeling and perhaps we could have connected and met up post NICU – Hindsight is a wonderful thing.
Sometimes I feel like a fraud – like a NICU fraud – Machair spent 2 weeks in NICU. I have been told so many time “Oh, only 2 weeks”, It may well only have been 2 weeks – but those two weeks were a living hell for Iain and I, the fear, the worry, the anxiety – when not on the unit the constant on edge feeling anytime the phone went. I know those types of comments are not said with any ill meaning, but they devalue the journey of us as NICU parents and make me feel like a fraud. Am I a fraud? Did what we go through not matter?
Yes, we were lucky, Machair was discharged after a 2 week stay on the unit – but I was ill prepared for taking home a 1.8kg baby – He didn’t even fit in the car seat. I hadn’t had time to Nest! Where would he sleep? nothing was ready! But as we walked through our front door and closed it behind us for the first time as a family of three none of it mattered. We were home, everything else would fall into place eventually – and with the support of our family it did.
We have had some complications along the way – having 8 different Health Visitors since birth definitely didn’t help with Machairs continuity of care. As an NICU Graduate Machair has been diagnosed with Spina bifida occulta, an arched spine, Excess fluid on his brain, low muscle tone in his mouth and a little bowel complication but all of these do not define who he is. He powers through it all and having just turned a year old corrected really has shown me just how amazingly strong and resilient premature babies are.
As Machair turns a year corrected I feel like a weight has lifted, there is a slight clarity. When I think back yes, I am still plagued with paralysing flashbacks, but I also am able to remember the good times, the 1st times and all the amazing memories we have made along the way.
If I was able to talk to my past self, I would say hold tight, you are in for a bumpy ride, it isn’t going to be easy but you will make it through, you are stronger than you ever thought possible. YOU GOT THIS!
To anyone supporting someone through the NICU roller-coaster – be there, be present but not overbearing – offer to help with washing, making meals, cleaning the house, prepping for baby coming home, meet in the hospital for a coffee but don’t expect too much.
Love Kirsten, Iain and our very own Miracle Moon, Machair