"No matter how I felt at times, I came to realise I wasn’t alone in feeling that way" - Niki's story

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Niki's son Arwyn was born at 37 weeks via c-section in February 2023. In her story, Niki shares her feelings towards their NICU experience, and the sense of community she found on the unit.

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Hear Niki's story in her own words.

At 35+6 weeks I was admitted to hospital with some preeclampsia markers. At that point, there was no immediate danger, but my medical team wanted to make sure I had all the support to get my baby to term and keep me well.

At 37 weeks it was clear that my baby needed to join us, and the most wonderful c-section delivered him on 27 February 2023. This was my third abdominal birth and the best skin-to-skin I’d ever had. I’m certain that given another ten minutes, he would have been breastfeeding.

In an absolute state of bliss, we were wheeled to recovery. Me and my baby were focused on each other. Once in recovery, moments away from the first breastfeed, everyone around me started panicking and they took my little boy away. His stats were plummeting and he needed help.

Within two hours of being born, my baby was ventilated and in NICU whilst I was unable to move with no idea how far away he was. I sent my husband to be with him.

As soon as I could feel my toes I asked to be taken to my baby. I was ill-prepared for the warmly sensitive welcome from the receptionist in NICU. Instead, I expected it to be a place where the fear of what was happening would force an anxious silence, not feeling like my full term baby belonged. However, the moment I was wheeled through the doors there were empathetic smiles and a distanced embrace from a community I’d spent the weeks leading up to his arrival begging not to be a part of.

Seeing him there, in his incubator with the giant muslin I’d instinctively expressed colostrum onto for him, was such a different image to the one of him looking at me in theatre. I couldn’t get close enough to see him properly, but I could see all the tubes, the splint on his hand, his beautiful face obscured by the ventilator, OG tube and all the stickers needed to hold that in place. I could just about see the top of his head and the little wisps of dark hair.

There’s a distinctive sound to the NICU: a mix of calm reassurance with beeps and ringing and panicked but somehow calm voices, wheels moving and chairs scraping across the floor as people move to get close to the incubators as quickly as they can, all the time giving dignity and empathy in equal measure, with kindness in every moment. The sounds both haunt me and comfort me to this day.

My head was filled with a million questions but the loudest was ‘Why?’ I think any NICU parent will agree that it’s one of the priority questions you have, no matter what stage your baby is born at, and it’s one I don’t think ever gets fully answered. How can you reconcile such pain and fear and the challenges with any universal logic?

Next to the ‘why’ was the full term parent NICU guilt. Although his journey was terrifying, our little show-off made it clear he wasn’t staying on the unit for too long. He had siblings to meet after all.

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There’s a guilt when you finally know your baby’s journey through the unit won’t be a long one and that his recovery has a certainty to it. Particularly whilst you’re in the family room talking to someone whose child was born at 23 weeks and has such a long journey ahead without any certainty, just hopeful optimism. The guilt, the sense of displacement and the feeling that perhaps all your fears are disproportionate by comparison is overwhelming.

Having him referred to as handsome and a good fighting weight, whilst other babies were called dainty and spirited, wanting to jump and cheer when the doctors give you good news but feeling you have to subdue your joy because you don’t want to be insensitive, is so conflicting. Especially at a time when you need to celebrate everything and anything you can to see you through each day, to keep your strength and morale boosted as you navigate this time, and your own recovery.

Arwyn Orion Merlin, or Wyn as we call him, made a speedy journey through the neonatal unit, from NICU to HDU, then LDU. Whilst it was incredibly traumatic, watching him be resuscitated, undergo a lumbar puncture and multiple cannula insertions (because he was very good at pulling them out), endless blood tests and so on... there was a comfort and a beauty to it.

Sitting next to his incubator, I could feel how magical my boy was, watching him under the jaundice lights and raising his head when he heard our voices. That moment when all the tubes and stickers were gone and we could finally see his face, was a bit like watching the catchphrase reveal.

The bond we built through kangaroo cuddles and comfort breastfeeding, the support we had with feeding and being part of his cares, the times we’d talk him through bringing his stats back up like we were bingo callers or racing commentators! Maybe the writer in me romanticises these things to cope with them, or maybe my magical dude cast a spell on me…

People say, “You can leave NICU, but NICU never leaves you,” and it’s true. I’m going through a range of emotions as we approach Wyn’s first birthday, still processing it all, still finding new questions to ask, still holding my breath every time he aspirates or coughs. What I brought home from NICU with me wasn’t just that or the bravest little guy I’ve ever met, but the sense of community on the unit.

No matter how I felt at times, I came to realise I wasn’t alone in feeling that way. Not one parent or staff member on NICU made me feel that our boy didn’t belong in there, that we were any less deserving of the same level of care because he was full term. Everyone embraced us just as we’ve embraced them.

There isn’t a single day I don’t think about the staff or the parents I met. It’s a big part of our family story, a precious part because it meant our dinky dude got home safe and well, and we don’t take that for granted, not for a moment.