What I wish I knew about the Neonatal ICU

Calvary Mae Layne

Cole Layne

First, I want to say congratulations! Your new addition is practically perfect in every way, and you are the perfect caretaker for your little one or ones! Welcome to your NICU journey. Maybe you had prepared for a stay here or perhaps it was a surprise, either way, you have a wealth of people looking to support you! Being a NICU mom myself I know how scary those first days or weeks can be. I gave birth to twins at 27 weeks of gestational age, and we experienced all the ups and downs a NICU stay has to offer. Here are ten things I wish someone had told me on day one.

1.      Celebrate! Celebrate the birth of your little one. Celebrate them even though this is scary. Celebrate them even though you are worried. Celebrate them even though visitors are limited. Take as many photos as possible, journal, and be encouraged that your family has grown! As time goes on celebrate the small things and write down milestones. Even if you don’t feel like it right now this will be a special gift to yourself to look back on. Also, ask for help from your nurse if needed! They will be happy to help you get a milestone photo or footprints!

2.      Coffee, Food, and Lounging. The NICU has a coffee station, a water refill spot, and a family lounge area. Feel free to make yourself at home. Where your baby lives is your space too! Starbucks opens at 9 AM downstairs by the gift shop. For me, this was a critical part of my self-care. It felt like a special treat on hard days. The chairs inside the NICU can be comfy! One of the chairs opens fully so you can lie down entirely if you are spending the night.

3.      Ask Questions! Don’t know something, ask! Even if it feels silly, ask anyway. Communication with your care team builds trust and opens the opportunity for education. Nurses became like family because I asked questions about anything I didn’t understand. It also helps them because they may not have realized it was something a caretaker didn’t know and can offer the information to the next family. Also, ask for resources. Social workers are in the NICU to help you with the necessary resources. One time they even brought me a Diet Pepsi. If there is something that will make your stay easier, I bet if asked they will try to accommodate you!

4.      Rounds and calling the NICU for updates. It is important to know when the team is rounding on your baby. At times it might suit your schedule to attend rounds. This is a great time to understand the plan of care for your baby and ask any follow-up questions that might arise. The nurses will tell you to call and check in on your baby anytime. So do just that! Be ready to give your baby's name, room number, and band number. If I didn’t attend rounds, I enjoyed calling for an update a little after so the nurse could update me on what was said. I also really liked calling the night nurse right before I went to bed or was up pumping. Hearing the voice of who was taking care of my baby and that my baby was doing well helped the night anxieties pass.

5.      Breastfeeding and the NICU. Let me be the first to validate what I know you might be thinking, this is HARD! Breastfeeding alone is difficult (I breastfed two other children for two years before my NICU journey.) Exclusively pumping is even more difficult. If you can get two weeks passed the day you want to hang up the towel, it will get easier! Promise yourself on the day you want to quit that if in two weeks you still want to quit… you will at that time. Utilize your lactation support system at the hospital as much as possible. However, at the end of the day, nothing is worth your mental health.

6.      Your baby and you will bond. Here you are in the NICU, and your baby is in an Isolette with monitors, and you have no idea what half of them even mean. It’s not what you envisioned your role being in their life. You may feel like a bystander. However, I assure you that you and your baby will bond. They will know that you are their caretaker, and they already love you. Help with their care and be hands-on when you are ready. Soon enough, that hand hug will turn into a hug around the neck!

7.      You are doing the best you can with the circumstances you have been dealt. Do not compare your circumstances to anyone else who has been on a NICU journey. Every single one of us has a different story. Some of us have other kids at home, a single caregiver, multiple babies, or must go back to work right away. There are so many factors that play into what your time spent at the NICU looks like. If you are doing your best with the circumstances you have in front of you, that is all you can do! I asked myself this many times when I felt like a bad parent for not being able to come to the NICU every day. We lived over an hour away and had two other kids at home that I homeschooled. I couldn’t come as often as someone who lived 15 minutes away from the hospital and this was their first baby. Sometimes your best is missing a day to get some sleep or take care of errands. I called once crying. I needed to miss a day because my home life was drowning. That week missing a day was the best I had! When you are speaking down to yourself and feel like you aren’t doing enough… ask yourself, would I speak to my best friend like this?

8.      Let yourself feel emotions. The NICU is an emotional rollercoaster. Let me be frank what you are experiencing is traumatic. Survival mode is not where you want to find a permanent residence. Feel the things. When you are overwhelmed sit there with that feeling for a moment. When you are grieving what you thought newborn life “should” look like, allow yourself to cry and be sad. The only way to heal from traumatic experiences is to allow yourself to process them. If you allow yourself that moment, I truly believe that it will make for an easier future.

9.      This is normal. You will hear “Don’t worry, this is normal!” a lot from your care team. Things that do not seem normal and that seem big and scary can be quite normal for a NICU baby. I am with you; this doesn’t feel normal! However, your baby’s care team is in the NICU all the time and does know what is normal for a NICU stay. When we feel it is abnormal it is because we are comparing our NICU experience to what is thought would be a normal newborn experience. NICU normal is different.

10.  This too shall pass. Sooner than you know you will be home with your loved one and this will be a faint memory. You and your little ones are fighters!  Time moves forward and this is not what your family's circumstance will look like forever. Honor the time your baby is spending fighting. Be proud that your family can overcome hard things! The days are long, but the years are short. Soon enough you will have that baby home and experience all the things newborn life has to offer.

You got this! I am so proud of your tiny fighters and you!

Written with love & experience,

Lori Layne

(Cole’s & Calvary’s Mom, 77 Day NICU Stay)