family photo after the NICU

Advice from one NICU mom to another

By Amy Rogeness, mom to Cora and Ellie, graduates of CHOC’s Small Baby Unit

Having your child in the neonatal intensive care unit (NICU) or Small Baby Unit (SBU) is something that no one will ever truly understand until they experience it for themselves. It is hard to truly convey the emotional rollercoaster that exists when you have a child in the NICU. Whether your time in the NICU is expected or unexpected, a NICU stay is nothing that a parent wants to go through when welcoming their child (or children) into the world.

My twin daughters, Cora and Ellie, were born at 24 weeks and 3 days and immediately admitted to CHOC’s SBU, a special part of CHOC’s NICU designed for the smallest and sickest babies. Cora and Ellie stayed in the NICU for 136 days until they were finally ready to go home. You can read more about our family’s journey here.

Twins graduate small baby unit
Cora and Ellie

Before my twins were in CHOC’s SBU, if someone had asked me how I would cope with having a child in the NICU, I would have told them I wouldn’t be able to do it. Although my father is a neonatologist and I knew of the NICU and potential challenges parents can face, I honestly never imagined that I would have to go through something like that. I’m not sure that any parent really expects to be in that type of situation. I couldn’t have imagined a two-week stay in the NICU with one child, let alone a four-month stay with two.

Even looking back, it doesn’t feel real. Did we really do that? Did we really get through it? How did we find the strength to get through it? The answer is that we did it because we needed to – we had to – for our girls. Sometimes you discover a strength you never thought you had when the unthinkable happens.

My first piece of advice to other NICU parents is this: Be patient with yourself. Let yourself grieve for what you thought your child’s birth would be; this most likely isn’t how you imagined the beginning of their life to be.

Participate in your child’s care

Being at the hospital and being involved in your child’s care is not easy. While your involvement in their care is a key part of their treatment and helps establish connection between parent and child, it can be extremely anxiety-producing. Doing skin to skin when the babies aren’t stable can be terrifying. But, know that you are doing exactly what you need to do for them. This is something you have control over and something that will dramatically help their outcomes. It can feel overwhelming and scary, but this is your chance to care for them when you might otherwise feel powerless.

NICU parent holding twins
Amy holds Cora and Ellie in CHOC’s Small Baby Unit.

Remember that your baby — or babies — know you; they recognize your voice and they know your touch. Even though they are receiving extremely good care, no touch means more than yours. You are an essential piece of their care team.

One of the most amazing things my husband and I did was to start participating in the girls’ baths. When they were unstable, the girls would get a “bath” that included a small wipe down of their body. As they became more stable, they were able to get a bath in their bed. This included water and soap but did not happen in an actual tub yet. When the girls had their baths in bed, the nurses and respiratory therapists would work together to take off the girls’ breathing equipment to give their little faces a small break. The respiratory therapists would use an oxygen mask to ensure they had the proper breathing support during their bath. Thanks to this, we could actually see their faces and get closer to them for a longer period of time. Giving your child a bath is one of those things that feels so normal and something that all parents do.  As we bathed each girl, it almost felt like we were finally able to really see them for the first time as our children – see their features, their eyes, their expressions. It also felt like they could really see us for the first time, too. The connection we felt with Cora and Ellie during that first bath was amazing. I remember leaving the NICU the night of their first bath feeling lighter than air. I think it’s something that all parents in the NICU, especially the SBU, should experience.

A physical battle for the child, an emotional battle for the parents

A friend told me that during the NICU stay, your children have a physical battle and parents have an emotional battle. That was one of the most accurate things one NICU mom could say to another. As parents, you are in an emotional battle and it’s a hard one. Even when your baby becomes stronger and moves out of the critical stage, you enter another emotional phase of wanting and waiting to take them home.

In order to be there for them as much as you can, you need to take care of yourself. During our NICU journey, my husband and I made sure to prioritize going to therapy to work through the rollercoaster of emotions and the trauma of having extremely premature babies. Ensuring consistent therapy was extremely important and helpful in allowing us to be strong for the girls. As you go through the NICU, you will take care of yourself physically, but make sure to care for your mental health too; your mental health is just as important as your physical health. If you are struggling mentally, it will be hard to physically show up for your child. Your child is getting the best care possible at CHOC, and you need to take care of yourself, too.

Cora and Ellie after the NICU
A family photo on Thanksgiving, after the girls were discharged from CHOCs SBU

The NICU journey is unbelievably hard, but you are much stronger than you think. You will get through it, day by day, hour by hour, or sometimes even minute by minute. You might not think you can get through it, but you can, and you will. You will find a strength you didn’t know you had because you know that your child needs you. It might not feel like it when you are in your darkest moments, but I promise that you will look back and be astounded at what you did and what you endured for your child.

Our daughters’ NICU stay was the hardest thing we have ever had to do, and one of the hardest things we will ever have to do – but we did it, and you can too.

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