The NICU: A Parent and NICU Nurse’s Perspective

by Brittany Long

mother and babyThe NICU is many things.

A place of joy. A place of sadness. A place full of fear and anxiety.

The location of someone’s best day of his or her life. The location of someone’s worst day of his or her life.

A place of healing and growth. A place where mini milestones are big steps.

It can be beautiful and wonderful. It can be scary, complex and intimidating.

It’s a place of constant sounds and beeping. It’s a place of multiple machines that’ll keep your sweet tiny humans alive. These machines help to keep little ones breathing, give them nutrition, keep them warm, and more.

Not What You Were Expecting!

I am both a NICU nurse and a mom of two children, including one with special needs. Although my boys never spent any time in the NICU, I have spent my fair share in the hospital as both a mom and a nurse. I feel my understanding of what NICU families go through is pretty clear.

So let me start by saying, I know this wasn’t what you were expecting. You had a plan and this wasn’t it. Of course you weren’t expecting your baby to be taken from you and your postpartum room. Of course you weren’t expecting a NICU stay. Why would you?

It is very overwhelming.

The monitors are beeping. There are cords everywhere.

What is that tube in your baby’s nose? They need labs drawn again.

boy in hospital gownIt is absolutely terrifying.

But rest assured that the NICU team is there for you. We will do our best to make this unexpected event tolerable. We will not only be your biggest advocate, but also your baby’s biggest advocate.

Your fears are real and we know that. If you have questions, ask. We know that most of the information we give you needs repeating.

Your Baby is Unique!

If there is one thing I have learned over my time as a NICU nurse, it’s that each baby is different and unique in his or her own way. Your baby is the boss from birth onward. Although protocols and policies are in place, your baby will decide how he or she wants to respond to such treatment. So we are there for your baby. To guide your baby as smoothly as possible to become strong and ready for the awaited trip home.

Be patient if you feel treatment is all over the place. You are not alone if your days seem like a cha cha of steps forward and backward. Some days will be better than others. There will be moments of progress and moments of regression. But in the end, our main goal is to send a healthy baby home with you.

A tip: try to stay off the internet. The internet will be full of happy and also devastating stories. But they never really give a complete picture and no two pictures are the same. You will come to learn your baby best. You will know your baby’s cues, likes, dislikes. Feel free to share them with new nurses or staff members that may take care of your child.

How Can You Help Make Your Stay Better?

nicu nurse and babyIf you want to be hands on, let the nurse know. Once your kiddo is stable, you should be able to hold, do skin-to-skin, and help with diaper changes and feedings.

If your stay in the NICU is expected to be long, ask if you can decorate the room with a few pictures, a baby blanket, drawings from the siblings, and other such things. Hospital walls can be gloomy and boring, and this will help keep spirits up during your time in the NICU.

Keep a journal. This will be a great tool where you can keep track of daily updates, see the progress your little one is making, and use as a reference in the future. Questions may pop up frequently and randomly for you; the journal would be a good place to write them down until your next meeting with the doctor.

Discharge and the Journey to Home

After quite a long journey, the thought of going home can be frightening. You’ll be going from constant care and continuous monitoring to just yourself and your support system. Your healthcare team knows this transition can be hard and we are here for you to make the transition as easy as possible.

They will help educate you on CPR, medication administration, feedings, signs to look for, bathing, safe sleep habits, and more. If you are uncomfortable in a specific topic or just need more training, reach out. Many different training methods and materials are available. Repetition is helpful! Once you are home, if you get stuck, just remember, your healthcare team is only a phone call away.

Author: Brittany Long • Date: 5/23/2019

About the Author

Brittany Long is a mother to two children, Landon and Liam, who has ATRX. She is also a wife and a NICU nurse who lives with her family in Northwest Indiana, and the founder of the International ATR-X Foundation. You can follow Liam’s journey and find additional ATRX resources on Brittany’s blog:

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