Hand to Hold's Official Blog: Written by Parents for Parents

Welcome to the NICU Parent Club

You park the car in the area of the lot that you’ve come to think of as “your spot.” Up the elevators and down the hall. You probably pass the nursery full of babies and families about to go home and feel more than a little annoyed that you have to take a few more steps down the hall and around the corner to the NICU doors. This is the part you rarely see on the hospital tour. You pass through the secured doors, head for the sink, and scrub in for the I’ve-forgotten-how-many-th time. Later you retrace your steps through the door and back down the hall. Without your baby. Again.

When your baby is in the NICU you do this countless times. Sometimes you are alone. Other times you’re together. But every time is hard. You might pass other parents who you recognize because you’ve seen them before between the isolettes. You also might see the parents that you know are new to this journey because the mom is still in a wheelchair, having just delivered, or you recognize the look of shock, disbelief, and vulnerability in their eyes.

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It’s an experience we’ve all shared – and yet, it can make us feel so alone. We already feel like we’ve been separated from the other families in Labor & Delivery who got to have a birth experience that resembled the one we expected. Sometimes while we’re in the NICU we continue to draw these lines of distinction. “All that baby needs to do is feed and grow so those parents will probably never know how hard this is… That baby is sicker than mine so I’m afraid to get to know them for fear of what might happen next… That baby’s full-term and they’re probably going home soon… At least they know their micropreemie baby will be here a long time and don’t have to wonder every day when they come in if today will be the day we finally get to use the car seat.”

The truth is that while the NICU family population is a diverse one, we all have more in common than you might think. If you look at the numbers across NICUs – 30% of the babies were born at less than 34 weeks gestation, 30% are late term preemies born between 34 and 37 weeks, and 40% are full-term babies born after 37 weeks. But any parent who has been in the NICU can tell you that gestational age is only one part of the story. Each of our babies has to reach the same goals before they go home. They have to be physiologically stable. They have to learn how to breathe, eat, and grow so that they’re ready for life outside of the NICU.

Here are just a few of the things we have in common:

  • We Were Not Expecting This  This was not in our birth plan. Even if we knew early on that this pregnancy was high-risk, we didn’t think we would end up here.
  • We Shouldn’t Be Here  We did everything we could to have a healthy baby. We did the best we could with the information and the skills that we had. We now know that life isn’t fair. The truth is that you can do everything right and still end up in the NICU and you can do everything wrong and still have a healthy birth.
  • We’re Having Some the Worst Days of Our Life  Seeing your baby struggling in the NICU is unimaginably scary. You know that for every good day there can be a bad day. All you can do is prepare and hope for more of the former and fewer of the latter.
  • We’re Having Some of the Best Days Too  We feel emotions we never imagined and celebrate things we never thought we could. Holding your baby for the first time or changing a diaper are extra special.
  • Nobody Really Understands What We’re Going Through  While our friends and family love us, unless they’ve had a baby in the NICU, they don’t “get it.” And it’s difficult and exhausting to explain. Even though we’re surrounded by people in the NICU who may be going through the same thing, it still feels very lonely.
  • We Just Want to Go Home  We are tired and our hearts are a little bit broken. Every time we leave the hospital without our baby it hurts. We know that homecoming isn’t a date we can mark on the calendar. Instead we have to take it one day at a time without knowing for certain when this will be over.

And because you’re visiting Life after NICU, I don’t have to tell you that even when you go home it’s not over. But it DOES get easier! Sometimes I think being a NICU parent gives us certain advantages. It can certainly make you a better parent. After starting in the NICU almost everything else is a piece of cake. This experience clarifies a few things for you. You’ve already learned what’s really important and you’ve learned how to figure out what your baby needs, advocate for them, and work with your team to get things done.

So, welcome to the NICU Parent Club! No one wanted to be in this club… but it is full of some of the most awesome parents you will ever have the pleasure of getting to know. We are part of an elite community of specially-trained parents. You are not alone. And no matter what happens you will be ok. There are people who have made it to the other side of those NICU doors and they’re waiting to welcome you no matter why you were there!



Erika Goyer
Program Director / Family Support Navigator, Hand to Hold

Erika is the Program Director and a Family Support Navigator for Hand to Hold. If you would like to know more about Hand to Hold or would like to become a peer mentor for another family who has had a NICU journey visit www.handtohold.org or email Erika@handtohold.org





Read more about Hand to Hold as part of our Give Back series here.

Erika Goyer About Erika Goyer

Erika Goyer (TX) is the parent of three sons. Her first son, Carrick Michael, was born in 1990 at 27 weeks gestation and weighing 1 pound, 14 ounces. He died soon after his birth due to complications, including Persistent Pulmonary Hypertension of the Newborn (PPHN). Erika went on to have two more high-risk pregnancies and two healthy sons. Her oldest son experienced developmental delays. He was diagnosed on the Autism Spectrum and has special health and educational needs. Erika is the Education Director for Hand to Hold where she shares her passion for helping parents gather the skills they need to be both nurturing caregivers and powerful advocates for their children.

Comments

  1. This made me cry, for sure. I believe that this experience did make us better parents, everything else parenting-wise is easy street. Thank you for a beautifully written article. Was like you were there with us each day for months. Brings back good and painful memories.

  2. This is wonderful. And after the NICU experience, you’re right, everything else is no big deal. Before my boys’ birth, I was a major worrier. I worried about EVERYTHING. But now, hardly anything phases me because I know what REAL worry is like.

    I cried at the ‘some of the worst days of our lives’ part because that’s so true. And it still makes me sad that the first days of my children’s lives were some of the worst of mine.

  3. Oh how this touched my heart even three years after my NICU experience. It was a life altering time period that ran the gamut of emotions and still effects me to this day. But for me I found something special on those months. Hope. Something on day one of my journey I didn’t have. But while there were blessings your article touched on one thing that was the hardest. It was a very very lonely experience. Since then I have come to realize that in talking with others and embracing those who are experiencing their own path that having the experience is something that you can pass on to others and encourage hope. Thank you for this article and defining the many emotions openenly and honestly that you feel during a NICU stay.

    • It is a very lonely journey. Even today, nearly 3 years after my twins were born 3 months early, when I talk to people about those times, I think to myself that they don’t really get it. My coworkers, for example, see a regular woman who is doing her job and goes home to be the mother of 3 children. They see my twins because I send them to the on-site daycare at my work (lucky me!), they know those 2 adorable kids were preemies, and they tell me how well my kids look. We talk about the early days sometimes. It’s on my resume that I stopped working for nearly a year (between bedrest and caring for them after they came home from the NICU). My coworkers will see that I still miss work to take one of them to yet another dr’s appointment. But still, they don’t get it. They don’t understand what it really means to have gone through this experience. Once in a while it strikes me how very clueless they are… But I’ve learned that it’s ok. There are enough people who do understand. You find those people who belong to the club, and you feel an instant connection. And you know what, sometimes its nice to be treated like a regular working mom, despite the fact that that title is not something to be taken for granted.

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