I now know NICU

I was inspired to write this about my experience a couple of months after leaving the NICU, after reading a similar piece on Peek-a-boo ICU.  I dedicate it all the the NICU staff, and I really do mean all the NICU staff, not just the nurses.  Everyone on the unit, you are all heroes. 

To be honest I never knew you existed. Back when I was pregnant, getting giddy buying blue and pink vests and worrying about side by side or front facing prams, I’d heard of midwives and health visitors but I didn’t know about you.

It was planned I’d have my babies early, mid July at 38 weeks and whilst I started to get uncomfortable and say I’d never make it past June, in the end, I didn’t even make it past 12th May. 29 weeks and my babies were on their way. I’d never heard of NICU and I thought premature babies were just small. Most people do. Most never know or need to know what goes on behind those alarm secure doors and darkly glazed windows, on the second floor, next to the delivery suite. Except you. And now me.

Even as the ambulance blue lighted us to Hull Royal, I had no idea there was a whole team already on alert, waiting to receive my tiny babies and help them in their first desperate hours.

Two hours later we met. I heard the words Neo-Natal Intensive Care Unit as the surgical team hurried to deliver my babies and it was then that I learned all about your world.   All about you. NICU. But who are you?

You were the one who took my 2lb twin babies, resuscitated and ventilated them so they could take their first gasps of life. You were the one that slowed the transport incubator as it passed my head to help me try to sneak a first peak at the tiny knitted hat that was all I could see of my baby. You told me you’d see us later, but when? Where?

You were the one who took care of my husband when he was first able to take his first nervous steps beyond the security doors into NICU to visit our babies, 10 hours after they were born. You were the one who spoke clearly and slowly to ensure his scrambled, worried mind could take in what you were telling him and who took the first photos of our twins so that he could bring them to show me.

You were the one who warmly welcomed me as my husband pushed my wheelchair into intensive care for the first time two days later. You made space next to the incubator for me to sit, you lowered it so I could see better, got me a cup of water, encouraged me to stand and talked me through the treatment and procedures the babies had undergone. 

You held my hand and soothed me when I panicked, cried and couldn’t breathe as the alarms suddenly went off. Over future weeks, you taught me what alarms to ignore and which ones to respond to. You were kind enough to stand me at the front of the Consultant’s ward rounds as the team reviewed my babies’ care, even though I was barely dressed in just my nightie and slippers.

You were the one who gave me the words ‘you only panic when you see us panic’ that I then went on to reassure other NICU mummies with. You were there every step of the way teaching us to do ‘cares’, cleaning our babies mouths out with cotton buds and changing their teeny, tiny nappies.

You were the one who knew instinctively that I just wanted to know if my babies were going to be all right when I bombarded you with questions and you gently but firmly told me that you couldn’t answer that question. I knew, but needed to be told you didn’t know and I didn’t ask again.

Despite my nerves, my fear and my own internal pain and discomfort, you were the one that showed me it really was possible to hold my little girl for the first time after 7 days and gave me that wonderful initial glow a new mummy should always feel as their baby’s soft head snuggles against her chest for the first time. You knew it was the tonic we both needed.

You were the one who was assigned to care for my babies for 12 hours straight, that time and again spoke with confidence as you described daily tests, procedures and results and then with compassion and understanding, as we faced new unexpected hurdles that flung us into disarray and anxiety once more.

You were the one who surprised us by putting Zac’s little drawings to the babies in pride of place inside their incubators, which was so lovely to see when he came to visit. You took time to talk to Zac, to move the incubator up and down ‘like a rocket’ and made him feel really comfortable in a hot, noisy potentially scary environment. Eventually, in Special Care, you would draw with him, give him little jobs to do and teach him how to wash his hands like a doctor, always including him in your world.

You celebrated with me for every ounce of expressed breast milk I was able to produce and you made out it was normal when I handed you half a dozen small bottles of newly expressed milk. You lent me your calculator so I could work out if I had enough left in the fridge for all the over night feeds and how much I would need to produce over night to feed both babies the next day. You laughed with me, and at me, as I raced between babies in Special Care and High Dependency ensuring both babies had all the milk they needed. You held me tight when I stopped producing enough for both babies after 7 weeks and felt I was letting them down.

You were the one who first helped me hold both my babies for the first time and who warmed my heart by laughing at what a ‘little monkey’ my baby boy was for not moving across my chest to make room for his sister. You made me laugh uncontrollably, you made me feel almost normal.

You taught me how to feed my babies myself via their tube, how to test their stomach acid first, how to measure the milk in the syringe and how to hold the tube as it slowly entered through their nose. You helped me cope when they vomited, as they often did, you kept me calm when I panicked.

You were always by the incubator or cot when their alarms screamed out to tell us they’d stopped breathing or their oxygen levels had dropped and you always understood how worrying those moments were for me.   You were the one who called us late at night to tell us our baby boy had had a setback and had gone back to High Dependency after just one day’s promotion to Special Care, and you were there the very next morning after a 12-hour shift, to talk me through why and how he was doing. You carefully pulled round the curtain so I could cry in private and give my baby the kangaroo care we both badly needed.

You turned my tiny, fragile babies over when I was too frightened, you picked them up and moved their tubes when I was too nervous and you were the one who first bathed them when I had no idea how to keep their tubes out of the water! 

You were the one who I left my precious babies with each night as I left the hospital to try to sleep and express more EBM. You were there when I left and mostly there when I returned the next day and you cared enough to tell me in detail all about their adventures overnight!

You were the one who cared enough about my feelings to ensure they were dressed beautifully in the morning and who shared in my delight at some of their matching outfits. You were the one who was kind enough to allow my neighbouring Mummy to text me a photograph of my baby girl when she had her oxygen mask removed for a short time and I wasn’t there to see it, even though it is against hospital rules.

You turned a blind eye when I needed a sneaky chocolate digestive. You encouraged me to go out for fresh air or to have a relaxing cup of tea, during a 10-hour visit. You taught me that ++ after YS on your notes meant we should celebrate a really big poo and I still use ++ now if something is extra big!! You were there to laugh with us when our baby girl tried to latch onto Daddy!

You were the one who cut short your lunch break to come and see my babies in the cot when they met for the first time. I filled up. You filled up. You weren’t afraid to show you cared about them too. 

10 weeks on you knew their faces, their cries, their signals, sometimes better than me. And yet, 10 weeks ago, I didn’t even know you existed.   I didn’t know how our lives would be intertwined; I didn’t know that I would never be able to think about my babies’ and how lucky we are to have them, without thinking about you.

I will never, ever be able to give each of you what you have given or done for me and my family. Sometimes the words ‘thank you’ don’t seem to fully express what you need to say or give. One NICU nurse told me that you couldn’t be a NICU nurse unless you understood how much families appreciated what you did and I’m grateful she said that, because I really, really hope you do.

Most of the world still don’t know what you do or who you are. In many ways, that’s a blessing. They cannot possibly understand how important your role was in ensuring we were able to bring our two babies home and how without you, some of my experiences during those 10 weeks would have been too much to bear. They can’t ever understand the important work you do. But we do.

So the next time you check an alarm, dispense Abidec or change a feeding tube, remember that we know who you are, know that you are appreciated and that every year, as we celebrate our babies’ birthdays, we will be thinking of you with fondest love. I now know you NICU; thank you.