Life itself gives us the opportunity to learn. It gives us numerous lessons in love, kindness, and compassion. Let’s not forget the lessons in anger, hurt, and jealousy. No one ever said life was easy, and no one said life was going to be fair. I am pretty sure I have PTSD from when I was maybe 7 or 8 years of age. I told my parents it wasn’t fair, and I had to write that very sentence 100 times. Even typing it now feels wrong.
The NICU is an overwhelming place for any person. It is sensory overload in a place where calmness is supposed to bring healing — yet another one of the many lessons I’ve learned through my own life. However, if you ever find yourself in the NICU with your little one (or have a family member on the NICU journey) use this as a guide. Here are the eight things I learned in the NICU.
1. You will never be fully prepared.
In the days leading up to delivering my son, I was on bed rest and in the hospital. I was told I wasn’t allowed to leave until my son was born. During that time, teams of doctors, nurses, and respiratory therapists came into my room to discuss what I should expect and what their role would be in the operating room and with any follow-up care. They sat down and spent about 30 minutes each. They took their time and answered any questions I had. I felt confident that I had all the answers. I had a sense of security. It was just a ventilator. It’s just surgery. It’s just a few weeks. I can do this. I kept telling myself I could do this. But nothing prepared me for what I saw in the NICU.
2. You will be overwhelmed.
The hospital is supposed to be a place of healing and calmness. For anyone who has ever stayed in a hospital overnight knows that sleeping is simply impossible. You cannot find quiet. Alarms are going off, you roll over on the light switch remote, and maybe you have a team of doctors doing rounds on you in the middle of the night. The NICU is no different. You have alarms blaring, and the lights are dimmed most of the time, but the ones that remain on are bright — nearly rivaling the sun’s rays. It is cold, and your child is in a box (or a bassinet) with wires, tubes, and machines next to them. Everything you are feeling becomes multiplied.
3. You will feel alone.
You know when you join a club — maybe a gym or a country club? You get a little “welcome” packet, and it tells you what exactly to expect. It tells you the amenities and the services offered. My favorite piece is when they say, “If you have any questions, please contact us.” For as much as I hate to admit this, the NICU is a club. It is one you never wanted to join. It is one you never expected to join. But you’re in. Our little brochure for the NICU club doesn’t have an, “If you have questions, please call.” You are alone. You feel alone. You feel isolated. You have no guidance. No service that takes the fear and pain away. No policies about “early checkouts.” You probably don’t have many friends or family who has experienced this, so there goes the tour guide so you don’t know how to process your feelings. You may not be able to articulate your fears and process the information you are given by the doctors. You may not know where to turn, and you might just be afraid to unload all of this on someone (hello, anxiety and fear of being a burden).
4. It is a rollercoaster.
There are good days in the NICU, and there are bad days in the NICU. One moment your child goes from taking 5mLs of breastmilk to aspirating on the very milk you just celebrated. One second your child is getting weaned off of high flow and moving to low flow, and when you come back from pumping, they may be back on the jet ventilator. Going back to the first thing I learned, you will never be prepared for what comes in the NICU. You will smile and cheer at one milestone and be crushed by a setback in a matter of minutes. You will be emotionally exhausted after being thrown around on the oldest, creakiest, wooden rollercoaster. It will whip your emotional range right out of its seat. So sit back, endure, and enjoy the ride.
5. The littlest things really do matter the most.
This is the reason behind my nonprofit, Mark’s Mission. The smallest things really do matter. Yes, my son was really small, and of course, he matters, but the smallest celebrations meant the world to me. I remember the first night I tried to pump. My milk hadn’t come in quite yet so when it did, 36 hours later, we celebrated at 2 in the morning, and I was wheeled down to the NICU to deliver the liquid gold. I cried when I walked in and saw Mark in a onesie for the very first time. It was such a huge moment for me. It was something to celebrate. Until that point, Mark had only been in a diaper. Not even a blanket. It wasn’t out of cruelty. It was easier to access his entire body should something go wrong. Still, a onesie made everything feel so real and comforting to me. In a strange way that I don’t think I can explain properly, it made me feel more connected to my son. It felt real. It finally felt real. This tiny human in this small box is wearing a onesie that is entirely too big for him. It was certainly a little thing that meant the world to me. So, you bet I celebrated.
6. You will become a changed person.
You go into the hospital and come out a parent. You embark on this incredible journey that takes you on cloud nine and brings you down to the lowest of lows. Still, you brush the sweat off your brow, wipe the tears from your eyes, and you put on a brave face for your child who is facing a battle of their own. You might also need to save face for your spouse, your family, and your friends. It is hard. You learn to process things a little differently. Time slows down in the NICU. Thirty seconds feel like 30 minutes. You become grateful for what you have, the strength your child has. You become aware of your own new abilities, as a parent and as a person in general.
7. You instantly become a mama/papa bear.
I will never forget when I was picking out my Yeti cup to have it engraved. Before Mark was born, I asked someone close to me at the time if I should have it say “Mama Bear” or “Mama.” She told me I should have it just say “Mama” since I am “absolutely NOT a mama bear.” To this day, I have no idea what she meant by that but I am sure of one thing… I am more than a mama bear. Mama bears can take lessons from me. I am like a mama shark or a mama T-rex. (I got a big head and little arms… Meet the Robinsons, anyone? No, just me? Okay.) In the NICU, you become your child’s greatest advocate. You are your child’s voice, and you are their fiercest protector in every step of the healing process. I cannot begin to tell you how many times I have gone toe to toe with doctors over a plan of care action I didn’t very much care for. Still polite and respectful about it, but there are some things I was NOT going to sit quietly on. I advocate for my son more than I ever thought possible, I am Mama Bear, and that should’ve been on my cup to serve as a warning.
8. You come out stronger than ever before.
In the NICU, there is so much talk about how strong your child is, and that is 1000% true. I didn’t think it was possible to watch this tiny human grow right before my very eyes. He demonstrated strength when strength didn’t seem like an option. It didn’t seem possible. He was small, on machines, and his body was fragile — but he was mighty. The same can be said for you. You will be exhausted. You will be scared, and your emotions will be on a ride of their own. Your mental and emotional state will be frail and fragile, and that is okay. It is considered normal. I am here to tell you that it takes immense strength to not break down at every turn in the NICU. Whether it is a time for celebration, or you are holding your breath and praying for good news. Your strength shines through and we see it. You are not alone.