Advocating for your Preemie in the NICU

How to be an effective champion for your baby

Preemie mother kissing premature baby in NICU
Kristina Greke/Getty Images

When your baby is born prematurely, you very likely don't know what to expect. It's not something that gets covered in the new-baby books and classes. It’s something nobody ever wants to know.

But when babies are whisked off to the Neonatal Intensive Care Unit to spend the first few days, weeks or months of their lives, parents are left worried, confused, overwhelmed. And often, feeling as though they're not important caregivers for their babies.

If you’re finding yourself feeling this way, you’re not alone. Unfortunately it’s a very common experience. 

The way parents learn to navigate this new world is from their NICU staff - the doctors, nurses, therapists, social workers who are the team of caregivers for NICU babies. However, even with wonderful NICU staff, you may still feel lost and confused about where you fit in your baby's life.

it's unfortunate that any parents are in a position of feeling unimportant or unnecessary in the life of their very own newborn baby. Because, of course, you’re vitally important to your baby. You gave her life, you nurtured her and carried her for as long as your body would allow, you ate for her and rested for her. Your baby knows your voice, recognizes your smell, and responds to your touch. Your baby knows you, and needs you in her life. 

But in the NICU, your baby also needs many more things to keep her alive and healthy.

She needs monitors to track her vital signs, medicines and tubes and wires, and the staff who are trained to safely use all of this equipment.

But just because your baby needs monitors, medicines, tubes, wires, nurses & doctors, that does NOT mean she doesn’t need you. She does.

While nurses and doctors will have days off, and many other patients to tend to, your focus is 100% on your baby 24 hours a day, 7 days a week, and that constancy means you have a perspective that is incredibly valuable.

Being an Advocate for your baby

Merriam-Webster defines an advocate as “one that supports or promotes the interests of another.” Your baby depends on you to support and promote her interests. Your doctors and nurses will be supporting and promoting your baby’s interests as well, and in ways that you can’t, but not one of them loves your baby more than you do. Not one of them.

Your constant presence in your baby’s life is a critically important piece of the puzzle. 

As an advocate, your job will be to learn about your baby and pay attention, and then speak up on her behalf. It means speaking your mind, asking questions you feel need asking, and demanding the best for your baby.

First things first

I'd like to suggest that you start with giving yourself permission to love your baby. You probably feel worried, possibly afraid of the outcome. But your baby is here now, and regardless of the outcome it’s good to make the most of every single day. Allow yourself to attach to your baby & love your baby completely.



Next, it’s time to learn what you can about the NICU in general and about your baby specifically. The more you understand and show a willingness to learn, the better.

There are two important reasons that learning is helpful. First, with more knowledge, you’ll be better able to understand what's happening and contribute your observations to the team. Secondly, by asking questions and being willing to learn, you’re showing the NICU team that you respect them, you want to learn, and they can count on you to be informed and participate. It helps build a strong connection based on trust and knowledge. 

Advocating effectively for your baby means joining the team of caregivers. It requires teamwork


Next, share your hopes and dreams with your NICU team. There are a million different styles of parenting, and your NICU team can not know what you want if you don’t let them know.

By sharing your personal wishes, you further improve your connection with the staff. And you improve your confidence that your baby is being cared for in the way you desire.


Once you’ve started to feel comfortable learning from the team and sharing your ideas with them as well, it’s critical that you keep communication regular. Every NICU does things differently, so this may be easy or difficult depending on your specific experience.

Without regular communication, you can't be an effective team member. And you can't recognize those small changes that you, as a parent, are likely to notice as they trend over days and weeks.

Call when you can’t be there. When you do visit, find some time to talk with your baby’s nurse to get a clear update on what’s going on. Try to come up with a regular plan to get updates. 

Take Action

Finally, in order to advocate for your baby, you need to do as much hands-on care for your baby as possible.

For some extremely fragile babies, it may mean simply providing a comforting touch during care times. For more stable babies, it means learning to do diaper changes and taking temperatures, and holding skin-to-skin. As babies progress, it means being willing to learn bottle feedings and giving baths. 

Of course, this depends on your ability to actually be at the NICU. And that’s a complicated issue, no doubt.

You may not have the luxury of spending as much time in the NICU as you would like. Whether it’s because you have other little ones at home, or a job you can’t miss, or you’re physically and emotionally spent and you need time away, it’s perfectly okay to do what you have to do to make it through the experience.

But the more you can be at the NICU and have your hands on in the care of your baby, the better you’ll know her and the stronger your role as a team member. 

Putting it all together

With effective communication and hands-on experience, you'll have the tools to be a wonderful advocate for your baby.

When you see things that concern you, you'll know how to bring up those concerns. When you find your baby in the care of a nurse you can't work with, you'll know who to speak with to make other arrangements. When your baby is nearing the day she goes home, you'll have learned as much as you can so that you're prepared to parent her as effectively as possible. 

Best wishes on this journey.

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