Can you briefly tell us about your NICU experience?

I had several bleeds during my pregnancy with placenta previa, which landed me on bedrest in the hospital before our son was born. The NICU stay was expected at that point, but we were hoping to delay his birth as long as possible. He came at 25 weeks and 3 days and I remember feeling oddly calm during the C-section. I was discharged from the hospital on day 4 and was absolutely miserable, we stopped to get dinner (it’s an hour drive home) and I remember looking at all those people going about their lives like nothing was wrong, even though the world felt upside down to me. It felt like I was leading a false life when I was anywhere but the NICU. I loved sitting next to my son’s isolette because it was the only place that seemed to feel “right” even if he wasn’t stable enough to be held. He spent 4 months in the NICU with many ups and downs and a few very scary moments.

What was the hardest part about your NICU stay? How did you cope?

Watching my son struggle and feeling helpless. I made it my mission to pump as much milk as I possibly could because it felt like that was the main thing I could do for him. I would be there for as many of his “care times” that I could be, just to have the opportunity to feel useful. I gave him “hand hugs” and held him as often as I could. When he wasn’t stable enough for a cuddle, I could keep my hands busy by doing cross stitching, which is something I just started doing while he was in the NICU to keep myself occupied but still present. My husband and I also talked constantly about how we felt, supported each other as much as we could and found joy in any small positive thing that happened. My husband has always been the person to find humor in any situation, which helped to balance out some of the really difficult times. I also talked with the other NICU families; even if we didn’t have the same experiences, we had a lot of similar emotions and it felt good to have people that we could relate to.

Did this experience teach you anything about yourself? Your family?

I learned about setting and holding my boundaries with family (and others). Both our families are very involved, which is nice that everyone wants to be so supportive, but it ended up being a burden to update everyone in detail, then listen to all the different opinions and emotions that everyone else had, especially when we were still trying our best to process our own. My husband and I learned that we needed to have each other’s backs and step in when we were feeling overwhelmed.

Do you think that your NICU experience had an effect on the way that you are raising your son?

Definitely. Shortly after he was born, my husband and I talked about our expectations for his future, no one knew what types of support he might need and what “success” would look like for him. We’ve revisited that conversation many times and I think our parenting style comes from wanting to support him through any of the difficulties he has and giving him opportunities to learn and tackle problems in his own way.

What advice would you give to parents who currently have a child in the NICU?

Listen to the nurses and doctors, and educate yourself on what your child is going through to help you make tough decisions. Also- find a community of parents that you can relate with. I joined several online communities and talked with the other families in the NICU, and I really appreciated the support they offered.

What’s the one thing that you wished you had known at the start of your NICU journey?

I wish I knew that I wasn’t the cause of my child’s suffering. I felt like I had failed the first step of being a mother that everyone takes for granted, that he was safer in an isolette in the NICU with strangers caring for him than he was staying in my belly. I wish that I could’ve felt and known that it wasn’t my fault.

Is there anything else that you want to share?

I feel so indebted to the NICU staff for everything they did to help us be successful. There are a few simple things some of them did that helped me immensely. The simple comment that his heart lowered when I gave him a hand hug, that he looked so comfortable during skin-to-skin, or that he tolerated the heal stick so much better because I was around made me feel connected to him. I’m so thankful for the nurse that engaged me in his care as soon as I was able to stand at his bedside to take his temperature or change his diaper. Some of the staff were so empathetic and just amazing at what they do.

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