THE NICU EXPERIENCE

The TV series ‘this is us’ recently aired an episode in its latest season where one of the main characters experiences a premature birth at 28 weeks. I’ve not yet been able to watch the episode myself, but I have seen many comments eluding to the fact that it is sadly, wildly inaccurate and does not portray the NICU experience as well as it could have. I can understand though how much of a daunting task this could have been for producers though, so I’ll reserve judgement for when I’ve seen the episode myself.

Thing is though. The NICU is near impossible to describe. Nothing can prepare you for what you experience when you walk in there for the first time. It is terrifying. It’s like bulldozing through a brick wall, in a hazy slow motion, while someone is throwing bricks at you. Blow by blow you keep moving forward one step at a time, you can’t stop, you can’t run for cover, you have no choice but to keep moving forward one step at a time.

Before you even get to see your child for the first time there are ground rules, things to learn, things to do. Learning how to wash your hands, where to leave your phone, what you may and may not wear, what you may not bring in, where you leave your handbag, bottled water, much needed coffee, etc. These are only the beginning and once you’ve navigated your way through washing your hands and ensuring that your clothes are cupboard fresh and not covered in hospital germs, you enter your babies room. Any number of life saving equipment surrounds their incubator, attached to them, keeping them alive. You search in the dark of the incubator for the tiny body that is apparently your baby. When your eyes finally settle on her you are shocked at just how small and fragile she is.

A rare moment when the Giraffe Incubator is open. Charlotte is in there, somewhere.

You are only beginning to comprehend what lies ahead for you and your family. While you are still trying to comprehend what’s happened, your babies nurse gently explains her vitals to you and tries to navigate you through it all. She’s honestly giving you as little information as possible during your first visit. But it feels as though she’s throwing a medical journals worth of information at you in one go. You can hear her, but you can’t really make sense of it all. All you can do is to look at your child. Breaking eye contact is next to impossible, you fear that if you stop looking at them that something will happen to them, that they’ll feel you leaving their side and not want to fight any more. You are trying to hear the nurse, but there are a thousand pieces of equipment humming, pinging and beeping in the background. Just outside the door are more nurses discussing their patients, alarms beep in the background, a radio plays a familiar inappropriately cheerful song in the background. In the corner a mom is reading softly to her baby. You want to ask questions, but your tongue has gone dry. And with every unfamiliar new alarm sounding off suddenly in the background or in your babies room, your heart stops beating, fearing that the alarm is announcing death.

Welcome to the NICU. Your journey is only just beginning. For most babies, their stays will be nothing more than a formality or precaution and a night or two, albeit, these few nights will be understandably terrifying for their parents. For others the stay will be for a few days, perhaps even a week. And for a small percentage, the stay will be months.

It’s a unique world. One that can only be comprehended and understood once you have been unwillingly cast into it. If you were fortunate enough like we were to be part of a small and intimate NICU, you find yourself becoming part of the furniture almost. You sit at your daughters door, confined to her room, her sleeping on your chest finally, or still confined to her incubator, reading out requested nursey rhymes to staff and parents. You share jokes, knit patterns, favourite recipes.

You learn to read the nurses faces in the morning when you arrive, you know when there’s been a new arrival and it’s been touch and go. You learn which paediatrician is on duty, purely from a nurses demeanor when you greet them. You grab coffee for everyone from the staff canteen, you’ve been there so long that people start assuming you are part of the staff content of the hospital. You assist new parents when they are standing by the basin, unable to remember exactly how to wash their hands, terrified that if they do it wrong that they will kill their baby, so they stand there and stare blankly at the basin.

You stare in awe at your baby and wonder when you’ll be able to do more than just hover your hand above her body, her skin so fragile that a simple touch can tear it open. You wonder if she can hear your voice. You are overwhelmed with emotion on the day you walk in and are told you can hold her for the first time. You’ve been yearning to hold her for weeks and the time is finally there. You can’t believe she is yours, how perfectly natural it is to hold her, in spite of the equipment attached to her. And then the shear horror when she is so comfortable that she altogether stops breathing or her heart stops beating while she lies sleeping on your chest. When nurses calmly massage her to get her heart pumping again and when essentially you learn to revive your own child every time it happens again after in the seconds it takes the nurse to get there. You begin to fear that holding her will kill her. You spent weeks aching to hold her but now you are too afraid to do so.

You learn the palour of her skin and the change of her vitals and know that the paediatrican will be asking for you to sign the umpteenth consent form for a blood transfusion. You stare at her first outfit, neatly folded and waiting beside her nappies, where it’s been for weeks, waiting for her to be strong enough, old enough, big enough to wear her first clothes.

You spend your days at your child’s bedside watching new babies arrive and go home before yours. For every two steps closer to taking your baby home, there is a guaranteed step backward as well. You swell with love and pride when you say goodbye to parents taking their babies home, but your heart aches for yourself, you wonder how it feels, and if you will ever feel it for yourself.

You overhear things naturally through your time there. You find out which babies are terminal, inoperable, made miraculous recoveries, gained weight, successfully transitioned onto breast milk, pulled through NEC, came off ventilation, were going to be discharged and so much more.

You go home every single day wondering if that night is going to be the night that you get a call to go back because something bad happened. You lay awake at night, waiting for the phone to ring. You stare at the ceiling and wonder how you will make it through the next day, but somehow you do. You look over at the calendar on the wall and realize you haven’t marked off yet another day in the NICU, 75 and counting you realize. When will it be our turn to bring our baby home???

Going home is the ultimate goal though isn’t it?! And when you are given the date you are thrilled, overjoyed, overwhelmed, and strangely terrified. You realize that you won’t be able to rely on all the equipment to tell you if your baby has stopped breathing or if her heart forgot to carry on beating. That looking after your baby will be on your shoulders only. After months of relying on the help and guidance of an entire medical team of professionals, you’re now responsible to care for a medically fragile infant. Suddenly you’re not so sure you want to go home after all.

Almost wire free and ready to go home.

Life within those walls is something that can rarely, if ever, be adequately put to words. Daily, you or those around you, are faced with scenarios you never imagined possible. There is no time to process what has happened, you live moment to moment, crisis to crisis, victory to victory. You watch the clock and count the days until you can take your baby home. Because when you walk out those doors, your life will pick up where you left it. The truth is though, that for most, life will never be the same again.

The NICU is an experience that changed me for life. I walked out those doors with my daughter as a different person. I’ve only skimmed the waters edge with some of what I personally experienced and what many other parents experience in their time there. Every babies journey is different, but the fear their parents feel when they know their child will be spending an indefinite amount of time there is universally understood by anyone who has worked or spent time there.

On our way home for the first time, after 91 days in the NICU.

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