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Beep…beep…beep

September is NICU awareness month, today Emma Cater tells us about her daughter Ada-Grace, who spent 2 weeks in NICU after she was born.

Beep…beep…beep

You know, that probably doesn’t sound that menacing or a big deal to most. But if you’re a NICU mama, if you’ve had the experience of your precious bundle of joy being swooped away from you for the first few weeks of their lives (or even longer), you’ll know very different.

Ada-Grace bounced into my life, full term, or just a day earlier than her due date to be precise. Certainly not early enough for me to even worry that she might be taken away from me to be dependent on machines to help her maintain oxygen levels. But she did.

She was born by emergency c section, and after an initial panic, she actually came back to the ward with me for a short while. It was only when the midwives did their routine checks that things changed very quickly. “We will just check her over, and do her oxygen sats” the midwife told me with a reassuring smile. However the machine wasn’t working very well, and it was suggested they take her up to NICU to have a try on one of their machines. “Don’t worry, their machines are much more accurate up there, it will only take a few moments and you can even come along if you’d like to?” Of course, I wasn’t going to let her out of my sight, I’d waited so long to meet her. The midwife and my parents helped me into the wheelchair, and off we went to the NICU. And that would be her home for the next two weeks.

When testing her oxygen saturation levels, it was clearly obvious to the specialists that she wasn’t getting nearly enough oxygen, there was lots of commotion and panic, and before I knew it, my baby’s face and chest which I’d barely had chance to see, was covered in tubes and wires, and she was pumped full of medication that I can still barely pronounce. This was serious. Luckily for her, she was cared for by the most fantastic group of incredible NICU staff, and I will forever be in their debt.

But with their care, came the reality that I was unable to care for her the way I should be. I couldn’t hold her, couldn’t soothe her or feed her, I didn’t get that skin to skin contact I craved, I didn’t get to breastfeed as quickly as I’d hoped to, I didn’t get to change her first nappy…I felt useless, numb, disconnected and lost. This wasn’t what any new mum expects their first few days to be like with their newborn. The only useful thing I felt I could do for her at that point was to express breastmilk to be administered through her NG feeding tube. So that became my new obsession and a coping mechanism for me. I’d express every couple of hours, fighting through the soreness of electric pumps, just to get the tiniest drops I could get each time, which I’d then swiftly take up to the NICU to give to her, at all hours of the day and night.

After a few days of being intubated, she started to pull through but had a bit of a setback which through the error of a staff member, resulted in the red button being pressed and a swarm of medical professionals around her crib to try and stabilise her again.

Beep…beep…beep…

She moved from being fully intubated, through to high flow, and the low flow, until only her NG tube was left, and I could finally see her beautiful face properly. It was at this point things started to sink in for me, I’d been on autopilot and it was now hitting me in waves, and HUGE ones at that! Because whilst in NICU, I also received official test results confirming Ada-Grace had a little extra.

Beep…beep…beep…

The months which followed were difficult for me, as for lots of others. 2 months after Ada-Grace was born, the country was flung into a lockdown, and I was truly alone as a single mama to a newborn. My parents weren’t allowed in the house. Those beeps started to haunt my dreams, woke me up in sweats and it became clearer to my GP that I was actually suffering with Post Natal Depression and PTSD, triggered by her time in NICU.

It was a long road, but those beeps no longer fill me with fright, but remind me now of what she has overcome, what she’s achieved, how much she has fought. It was a lot to deal with. No, correction, it is a lot to deal with. But seeing how she fought so hard for her place in this world, to be here, is just overwhelmingly brilliant. She is such a fighter, made of strong stuff. She absolutely amazes me, and she keeps moving forward, head and feet first each and every day. She is my NICU warrior.

Ada Grace is now 20 months old. She is the biggest Frozen and Moana fan ever! She loves to sing along (scream!) to the songs. She is a complete water baby, bath time becomes an ordeal trying to get her out, rather than get her in 😆 and she can be found enjoying any kind of musical instrument too, I think since her NICU days, she’s been making up with lots of noise ever since!

We are incredibly lucky that Ada-Grace is generally a very well and healthy little girl, with only a couple of minor issues. She has been discharged from Cardiology as the holes in her heart have closed, which was a huge sigh of relief for mummy! And although she has a floppy larynx, the ENT specialist was happy to discharge her from this service too, as it wasn’t becoming an issue for her. We are still under the care of Audiology, SALT and are awaiting an appointment to be checked over with Physio, but all for very small reasons. We have a fantastic paediatric consultant who makes sure she is given great care, and to him, and others working within the Hull Royal Hospital, and Humber Trust, I owe a great deal. Her NICU days taught me a great deal about how fragile life is, how we shouldn’t take anything for granted, and how we should be thankful through the ups and downs. I certainly am one of the lucky few.