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13 Things You Should Know if Your Baby is in the NICU

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Every year, some five hundred thousand babies are treated in the NICU. If your baby is one of them—whether he spends a few days there or has an extended stay—the beginning of your child’s life will be a little bit different from what you expected, and you deserve attention and support for that. Research shows that experiencing a NICU stay increases the risk of anxiety, depression, or PTSD (see here for more about these conditions), and even when parents don’t develop a mood disorder, they can still experience symptoms of these conditions.

I spoke with Kelli Kelley—the founder and executive director of Hand to Hold (handtohold.org), a nonprofit that supports NICU families—whose two children were born preterm, to find out ways to cope with the stress of a NICU stay.

FIND FAMILIES WHO KNOW WHAT YOU ARE GOING THROUGH:

Hand to Hold does something really amazing. They match you with other NICU parents who have shared the same experience. For instance, if you’re a mom of a twenty-nine-weeker, they will connect you with a parent who also had a twenty-nine-weeker and has gone through training in providing peer-to-peer emotional support. “Being able to call or text with a parent who understands what you are going through is critical to processing your emotions,” says Kelley.

To get connected with other parents, visit handtohold.org and click “Get Support” or call 855-424-6428. You will be contacted within twenty-four hours. The website also has tons of information to help you manage both the logistical and emotional aspects of this time, along with support for families who experience the loss of their baby. See here for more resources for NICU parents.

OPEN UP ABOUT WHAT YOU ARE FEELING:

“It is so important for us to not bottle up our feelings and try to ‘move on,’” says Kelley, “that we talk to others and understand and process all the emotions of a NICU stay.” The March of Dimes, which has a program to support NICU parents in the hospital, offers this advice (that really should be given to any new mom):

Give yourself permission to cry and feel overwhelmed. You may be concerned that if you let your feelings flow, you’ll never be able to pull yourself back together. But you will. Allow yourself to feel this release of emotion.

CONNECT WITH YOUR BABY:

Most NICUs now practice kangaroo care, in which parents hold their babies skin to skin, which has been shown to significantly improve the health of premature babies who are learning to regulate their body’s systems. It can also really benefit your mental health to feel connected to your baby, says Kelley.

Of course, “it can be overwhelming and scary to hold a baby for the first time when they are hooked up to machines,” says Kelley. And there may be situations in which you cannot hold your baby yet. In those instances, Kelley recommends starting with asking to change your baby’s diaper. “For a lot of NICU parents, that’s the first hug, the first real interaction and touch with the baby.” And, says Kelley, “the more we interact with our babies, the more confident caregivers we become.”

KNOW THAT A NICU EXPERIENCE CAN BE TRAUMATIC:

The NICU is filled with babies experiencing different levels of health challenges and interventions (especially in hospitals with large NICU units), some life-threatening, others not. Whatever the severity of your family’s situation, you will also be experiencing everything that is going on around you for other families. And that involves some trauma, which is why NICU parents are at a higher risk of experiencing post-traumatic stress disorder (PTSD). See here for more on the condition.

MAKE USE OF HOSPITAL SUPPORT:

In recent years, there has been an increased awareness of the importance of supporting the mental health of parents in the NICU, and in 2016, the National Perinatal Association released guidelines outlining the mental health support staff and family support programs NICU hospitals should have available.

At the very least, there should be a hospital social worker there to help you manage not only the emotions of this time but also the financial and logistical challenges you are facing. Others have staff psychiatrists or psychologists on hand or have partnered with organizations such as Hand to Hold to provide a more formal support system for NICU parents.

It is especially critical that you reach out for mental health support (either at the hospital or outside it) if you are experiencing any symptoms of depression, anxiety, or another mood disorder (see here).

THIS IS NOT YOUR FAULT:

As is the case with many issues related to motherhood, it is common for NICU moms to worry that they are somehow to blame for their child needing medical support. That’s an understandable feeling, but it is not based in fact. “Prematurity

does not discriminate. Every age, every ethnicity, every income level is represented in the NICU,” says Kelley. “You didn’t do anything wrong. Don’t blame yourself,” says Kelley. Talking with a peer mentor, the hospital social worker, or another mental health professional can help you internalize that message.

YOU WILL PROBABLY EXPERIENCE SOME OF THE STAGES OF GRIEF:

Whatever the reason your baby is in the NICU and for however long your child is there, it is likely a big change from how you expected to experience the first days, weeks, or months of your baby’s life. And that is a loss, says Kelley, whose own children were born sixteen weeks and six weeks early. With her first son’s birth, Kelley says, “I lost four months of pregnancy and watching my baby grow. I lost the baby shower, and the birth plan, my husband being there telling me to push, and the celebration of my family coming to meet the baby.”

YOU CAN STILL CELEBRATE THE MILESTONES OF YOUR BABY:

There are things you can do to reclaim some of what you have lost and to maintain a sense of normalcy during your stay. “It’s important to celebrate milestones during your NICU stay—such as the first bottle or bath—to find and treasure moments of joy,” says Kelley. There are also baby books specifically geared toward NICU stays.

RELY ON YOUR COMMUNITY:

“This is a time when you call on friends, your community, your coworkers,” says Kelley. “People delivered meals to us for months, someone walked our dog, someone cleaned our house.” It can be uncomfortable asking for—or receiving—help, but remember, motherhood is not a singular pursuit. It is a group imperative. It is how humans are intended to grow the species. If you need a pep talk about why it is not only okay but absolutely normal and good that you ask for help, read or revisit here.

TAKE BREAKS:

Getting away from the NICU regularly is especially helpful when your baby has an extended stay. “I remember the first time my doctor suggested that I leave and have a meal outside the hospital, I thought he was crazy,” says Kelley. “But you do have to sleep, you need to eat nutritious food, stay hydrated, and maintain close relationships.”

It can feel really hard to leave your baby, but you cannot be there for him if you are depleted and overwhelmed. When longer breaks away aren’t possible, “just walk outside the hospital,” advises Kelley. “Moderate exercise such as a brisk walk and fresh air often help rejuvenate and refresh you after spending hours sitting in the NICU, and then you are going to be better able to care for your baby.”

SET UP A COMMUNICATION SYSTEM:

Everyone is going to want to know how you and your baby are doing, but you have enough to handle taking care of your baby, yourself, and your family. You don’t have time to be a spokesperson, picking up the phone and answering texts all the time. Instead, Kelley suggests designating a friend or family member to post updates to social media or maintain a blog or other place where you can share the news you want to share with the people you care about without saying the same thing thirty-seven times.

TAKE CARE OF YOUR EMOTIONAL HEALTH WHEN YOUR BABY IS HOME:

The adjustment at home can be as hard as, if not harder than, your time in the NICU, especially if your baby requires monitoring and you no longer have the experts at your disposal. Make sure you have a good communication system with your provider and keep asking for support and help from family and friends.

“While the NICU stays of my children were the most difficult times of my life,” says Kelley, “I can now look back and see so many blessings. I encourage parents to journal, take lots of photos, and find ways to celebrate every milestone, and I also encourage them to seek support from friends, family, hospital staff, and peer mentors. You are not alone. There is an expansive NICU community of graduate families here to support you every step of the way.”


Been There, Done That: Moms Talk About the NICU:


No books ever addressed how to deal with the NICU. I really felt lost in how to deal with everything. I could not help with his care initially and felt like I was in the way when I was in the NICU and guilty as all hell when I wasn’t there, like I was a horrible mom abandoning my baby. For nine days, I could only touch his tiny hand andhead, nothing else. Just finally being able to hold him was an experience in bonding. For all the stories about immediate touch and breastfeeding to bond, my son and I did just fine having to wait.

NICOLE, WEST VIRGINIA

Our son was in the NICU for five days. We didn’t really understand what was going on; my partner was so tired but still pumping, and we were afraid he was going to die. The nurses were amazing, and the longer we were there, the longer we got a handle on what was going on with him and what we needed to do to get him out of there. It was still really scary to leave, because I became accustomed to all the machines telling me if everything was okay and having experts close by.

DONNA, DECATUR, GEORGIA

Find at least one person other than your spouse to whom you can go to any time of day or night for anything. I would also highly recommend finding one (or several) nurses to talk about anything, both medically and personally. Seeing them often when you go in to see your child will help the days pass faster as well as put your mind at ease because a friend is staying with your child when you can’t be there. Take time to take care of yourself. Give yourself permission to be away from the hospital for a bit every day to regroup.

—AMELIA, AUSTIN, TEXAS

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