10 Things Your NICU Nurse Wants You to Know

I have worked in Level IV NICUs for the past decade and have seen hundreds of families go through the experience of having a baby in the NICU. Most people do not spend time during their pregnancies thinking about or planning for a NICU stay, but the reality is that nearly one in every ten babies born in the US this year will require a NICU stay. Although the diagnosis or reason for their stay might vary greatly, nearly all families share similar feelings of fear, overwhelm, stress and even guilt and shame.

As NICU nurses, we are standing at your baby’s bedside right alongside you. We are there to serve as witness to your brightest joys and your deepest sorrows. To all of the NICU families – whether you are currently there, recently discharged or had a baby in the NICU years ago, here are 10 things your NICU nurse wants you to know.

(1.) It’s okay to be happy and sad at the same time

When your baby is born it's arguably one of the best days of your life. Your family is growing and you are welcoming a new little life into the world. But a NICU admission can take this day and taint it. Separation, lab draws, tubes and wires were likely not a part of your vision of your birth and immediate postpartum period. You might feel joy and gratitude that your baby is here and getting the care they need, while at the same time experiencing feelings of deep grief and loss. In the NICU, pain and joy exist together. We want you to know that you don’t have to be brave in front of us – we welcome and expect all of your feelings.

(2.) The NICU roller coaster is very real

The NICU roller coaster can be a painful and overused cliche. However, the reality of the experience is very valid. When working with a family of a newly admitted NICU baby, I always try to gently prepare them for this possibility. Many newly born babies, especially preemies, often experience a “honeymoon phase” where their vitals are all stable and they haven't quite realized they have been born yet. Often this honeymoon phase ends with something coming up in their journey – maybe they have a need for more respiratory support or there's something going on with their belly and they're having a hard time feeding or they have signs of an infection. These bumps in the road can be very scary and stressful, but they are an expected part of many NICU baby’s journeys. One of the phrases I teach new NICU nurses is to “never trust a NICU baby”. They are on their own timeline and as much as we want to control the path or outcome, we are there to create an environment in which they can grow and thrive. And we are there to support you and your baby through every twist and turn.

(3.) You are still the mama

Even in the NICU, you are still your baby’s primary caregiver and you still know best. Oftentimes in the NICU, autonomy and the ability to truly parent their baby is taken away from families. It can look like the NICU team is the primary caregiver. There is some truth to this, as NICU nurses and other care providers are specially trained to provide hands-on medical care to critically ill infants. But you still know your baby best. You are at your baby’s bedside for hours and days at time and we are just there for a snapshot of your baby’s day. If you think something feels funny or you have a question, please speak up. We trust and respect you as a crucial part of your baby’s care team. So keep being that little baby’s voice.

(4.) You can't be there for your baby if you aren't taking care of yourself first

So often I see families that feel the need to be in the NICU 24/7 and if they step away something horrible is going to happen. As a mama myself, I completely understand this fear. The idea of walking away and trusting another person to take care of your brand new baby is terrifying.

But you can’t be the best advocate and parent for your baby unless you are eating, drinking water, sleeping, showering and taking care of yourself. And often this is impossible to do in the NICU.

So it is important to plan times in your day (or even a day or two at a time) where you step away and reconnect to yourself. This might mean a walk outside, a long shower, having a meal that is meaningful to you or calling a friend. Whatever feels right to you as a way to recharge and reset, so when you come back to the NICU you can be there fully on and ready to support your baby. Without these breaks, I see families that are falling asleep, not processing discussions with the care team or even getting so sick they end up in the Emergency Room themselves.

Your baby needs the best version of you in order to truly thrive and grow. We are there during these breaks to be your eyes and arms – to watch over their vitals and give them love and comfort until you return again.

(5.) We are all on Team Baby

As NICU professionals, we chose to work in the NICU for a reason. We want to be a voice for the voiceless and take care of the most vulnerable but most incredible and strong patients in the world. Even in moments of conflict or uncertainty, at the core of our actions and care is always a true passion for serving NICU babies and their families. We are all on Team Baby together.

(6.) Learn as much as you can

The goal of every NICU stay is to discharge the baby home with their family. We want you to be able to parent your baby as much as possible while in the unit and are there to support you as you learn the unique NICU environment. Even if your baby is a pound, but has a diaper that needs to be changed – we can teach you how to do it. As the baby grows, many NICUs teach parents how to take blood pressures, reposition their baby and even administer tube feedings. Learning these skills early can help to empower you to take over your role as primary caregivers and can decrease any reality shock if your baby needs to go home with additional medical equipment at discharge.

(7.) Make the NICU your second home

Many babies can be in the NICU for weeks or even months. Most NICUs are fairly cozy, but you can personalize your space as much as your particular NICU’s policies allow. Many units can have families bring in personal blankets, hats or clothes for baby to wear (although most units have a whole wardrobe of baby gear, so do not feel like you need to bring your own). The space can be decorated with sibling’s artwork, milestone signs or family photos. You might be able to bring your own nursing pillow, snacks to eat or books to read to your baby. Take some time to nest and create a space that feels like a safe and cozy space that you and your baby can relax in. Many NICU nurses are also crafting experts and would love to bring some supplies to your bedside for you to create your own NICU masterpiece.

(8.) Days are long but time goes by quickly

When you are in the middle of living your NICU journey it can feel like the longest time of your life. Time might seem to stand completely still and it may seem impossible that the outside world is continuing. This can be particularly true as you get closer to discharge, but without an official discharge date in sight. Days can feel never ending, repetitive and frustrating.

As NICU nurses, we can hold space for these feelings. But we also know that the NICU is just the beginning. Take a moment to pause and look back to see truly how far you and your baby have come. The NICU will always be a part of your baby’s story, but it is just the first chapter.

(9.) NICU Babies have to learn how to do everything

Being born is hard work. Babies have to go from living in a warm, liquid bubble where everything was done for them to navigating eating and breathing on their own in a matter of minutes. In the NICU, we try to create a positive environment in which they can continue to grow and thrive. But we still need to navigate each baby’s journey with patience and understanding for their unique path and needs.

This can be especially frustrating for parents nearing the end of their NICU stay when the biggest barrier to going home is for the baby to learn how to eat. If there was a secret course or magical trick to teaching babies how to eat, believe me, we would be using it. But we have learned that it is best to let the baby lead the way. We all try to celebrate each small win while still understanding that each baby is on their own time. And it is so beautiful to watch it unfold.

And last, but not least…

(10.) You've got this

The NICU is hard and scary and overwhelming and wild, but you’ve got this. You were made to do hard things (and this is probably one of the hardest things you are going to have to do). But you’ve got this and we’ve got you. We are honored and humbled to walk this journey alongside you and your baby.

No one understands the NICU experience like other NICU families and NICU professionals. Join us in the Life After NICU community to find your people and get your questions answered by people who get it. Learn more here.