“You are the expert on your child.”

Those were the words that the kind NICU nurse told me as I slowly approached the covered incubator and cautiously lifted the corner of the quilted blanket. I was feeling many things at that moment, but expertise definitely wasn’t one of them.

I was the person who hadn’t even toured the hospital or taken a birthing class.

My only qualification for even being allowed in the NICU was that I had given birth to these babies. But having an emergency c-section at 28 weeks, only confirmed to me how incompetent I was.

I wanted to be a voice for my children.

I wanted to make the right decisions regarding their care.

I wanted to be the expert that the NICU nurse told me I already was.

But…I did not feel empowered. I felt anxious and scared. It seemed I was failing my babies at every turn.

As a new NICU parent surrounded by nurses, doctors, OTs, RTs, and a variety of other medical professionals, it is natural to feel like an imposter. And as a result, NICU parents are often intimidated and hesitant to speak up. Even though NICU parents may not say it, here are a few things we wish you knew.

We have a lot of questions, but we are afraid to ask

Much of what happens in the NICU can be confusing for parents. We want to be educated and involved in our baby’s care but may feel intimidated by the medical terminology or feel that our questions are an annoyance. We need someone we can go to for help and clarification. 

Tip: Encourage parents to ask questions. Validate our concerns, and patiently provide us with the information we need to make care decisions.

We may look ok, but we are not

Parents employ a variety of different strategies to cope with the anxiety, fear, and grief that are part of a NICU stay. My twins were in a traditional open-bay NICU, so I spent many hours a day close to the NICU staff. And yet, no one ever asked how I was feeling, or what I was doing to process this experience. Since I appeared to be functioning and fulfilling my duties as a NICU mom, I wasn’t on anyone’s radar. But I was not ok. 

Tip: Ask all NICU parents how we are coping and connect us to other NICU parents that can offer support.

We feel helpless

The NICU experience can make parents feel helpless, because the role we expected to take with our baby is different from what we are experiencing. Often our time in the NICU is limited by work schedules, other children at home to care for, and travel to and from the hospital.

As a result, much of the day-to-day care is completed by someone else.

Tip: Encourage parents to be active participants in the care of their babies. Provide us with an explanation and alternative, if it is not possible to hold or touch our baby at that time. Invite us to become a valued member of the care team, as an advocate.

We can’t thank you enough

It can be difficult for NICU parents to express appreciation for the amazing work that you do. 

But…KNOW that NICU parents are eternally grateful. 

So grateful in fact, that “thank you” just doesn’t seem like enough. We will never forget the impact you have made on our lives and the lives of our children.

Just like NICU babies, NICU families often need some critical care as well. NICU parents don’t have to be experts. A family-centered care team can invite NICU parents to serve as advocates. All that is required is a fierce love and unending commitment.

NICU parents have always been the authority on that.