The For the Littlest Story

For the Littlest began a long time ago, on September 23, 2011, when a baby girl was born in a furious rush – five weeks early. She was over five pounds, her heart was beating – but when they pulled her out, she didn’t cry. The silence in the room must have been deafening, but of course, I wouldn’t know. I was down the hall.

She was my baby sister, my mom’s miracle pregnancy, but that day something went wrong. She always LOVED when my mom would drink her daily allowance of one sweet tea or Diet Coke. She would typically jump all around and proceed to crush my mom’s bladder, but that day, she wouldn’t move. In a huge credit to mothers’ intuition everywhere, my mom managed to get herself an emergency C-Section that night.

Much to my confusion, after the birth my sister was down the hall in the Special Care Nursery. I knew something was up, so the nurses let me come in see and touch her before she and I had to part ways. Little did I know, that small gesture was the closest I’d come to her for over a month.

Caidyn, as she was now named, was transferred to the Level IV NICU at the Children’s Hospital of Georgia where we’d spend the next 80 or so days. I was too young to visit her and therefore I made my home in the waiting room, watching Top Chef reruns, coloring, and eating chicken nuggets from the McDonalds downstairs. The only bit I knew about her was what was wrong: she had an obstructed bowel they had excised over 30 cm from, she had something called a colostomy bag, a feeding tube, and at one point was in a medically induced coma so she could heal. For a 10 year old, I became pretty fluent in whispers of diagnoses. We were there every single day during visiting hours, and when we were home at night, I watched my mom and stepdad struggle with the fact that something was missing, but they always acknowledged how blessed we were.

I’ll never forget my mom telling me that there are sick babies that only get held by the nurses, because their families never come; there are babies that get the private room in the back because they’re so sick; there are parents that can only see their babies once a week because the whole region gets transferred here and they can’t pick up and live upwards of two hours away while their baby’s life hangs in the balance.

I held tight to the fact that we were so much better off, but at the same time, Caidyn seemed so close to death that it seemed unfathomable that another child would be closer.

They moved us to the general pediatric floor when she was on the up and up. We gave her baths in the sink every inevitable time her colostomy bag separated from its adhesive, we made friends with the sweet assistants that came in to take vitals, we got used to the sound of white noise, and most importantly, I got to hold her.

She was tiny and fragile and I never wanted to let her go.

We spent a few fun weeks on that floor, then we went back to the NICU, then home, then in an ambulance ride back to the NICU. By the end of the rollercoaster ride that it became (details of which would require a whole book to fully explain), the wonder and beauty of the NICU faded into anger and fear. I swore I’d never work in healthcare, I’d never step foot in a NICU, I’d never walk into that hospital again. But she made it out alive despite my bitterness, and she thrived – ostomy reversed, little scars faded, and athletic as all get out!!

In an ironic twist after my screaming at the heavens, when my brother was born months later, he was the first nine pound baby to be in the CHOG NICU and my dad thought I could handle going up to the fifth floor again, but I cried in the elevator. I backed into the right corner of the elevator and I sobbed. I was about to just turn around and leave, I knew I was still too young to visit, but the nurse at the desk decided to break tradition and let me in. I scrubbed up with my dad and I walked in to see Caleb. The whole environment beyond those forbidden doors was terrifying and fragile and fascinating, and however scared and angry I still was after seeing Caidyn like I did, at least I walked into the belly of the beast.

In the years that passed, I was a trainer for the football team, honor roll student, and aspiring ER nurse, but one day I decided to partake in an extraordinarily hard prayer and ask God what he wanted from me. His answer was entirely surprising: the NICU. I wrestled with him for a few months but one day, all of a sudden I was content. I remembered everything my mom said about the less fortunate babies. I wanted to be the one to hold them, the one to advocate for them, the one to be there and fight with them. After all, what else better prepares me to walk a family through all of the pain and wonder better than going through it myself?

I started telling everyone I knew that I was going to be a NICU nurse and I was so excited! but most people had no idea what I was talking about. I became an accidental advocate for NICU awareness, I plunged into researching the distribution of care, I learned the perinatal classification for most U.S. hospitals (a fun tidbit to share with your buddies on road trips – not), and I decided that it all needs a place to go and be shared. Hence, For the Littlest!

For the Littlest is here because there were great things and there were horrible things about my experience, but everything was very formative. There are things that have changed in the way things are done since then, but there are a lot that haven’t. There are still disparities in distribution of qualified NICUs; disparities that force parents and babies to separate and impede healing (it’s the science of love, we’ll talk about that). There are still some institutions with visitation policies that alienate siblings and family members. But luckily there are still good nurses, good doctors, and generally good people working in these NICUs, so there is still hope too.

The good, the bad, the complicated, I’ve been there – and if I haven’t actually, I’ve tried my best to do my research and put myself there so that we can all work together to make the world a better and more caring place for babies.

Thanks for reading and as always, be #nicustrong.

The first time I held her!!

And now she’s too big for me to hold her, but old enough to be cool!!

Published by carleyguill

Carley Guill - NICU Nerd, FTL Founder - B.S. Nursing, 2022

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