In continued recognition of NICU AWARENESS MONTH, I’m focusing this week on how to take care of your emotional wellbeing during a NICU stay. In addition to drawing from my clinical experience, I am especially grateful to have had some NICU moms weigh in on this piece. Meagan Owensby Garibay is a former NICU nurse and mom of two children who both spent time in the NICU stays. Seema Aghera is a mother of three girls and experienced a NICU stay with her youngest daughter. I am also speaking from my personal experience as a NICU mom. My NICU baby celebrated a birthday this month so it is also in honor of her that I write this.
But before I get in to tips and wellness strategies, I want to acknowledge just how hard it is to take care of yourself when your baby is in the NICU. When your baby is sick and vulnerable it can feel so hard to prioritize your own wellbeing. In my experience, it felt so unnatural to stop and consider my health that I didn’t recognize my own physical and emotional pain until well after we left the hospital.
However, despite how hard it may feel, it is exceedingly important to take good care of yourself. Surviving the NICU is like running a marathon with an uncharted course, full of hills and obstacles, and without proper training. To get to the end requires nourishment, flexibility, self-care, and at times breaks. See below for some thoughts on how to do it.
10 Tips for Surviving the NICU
- Get back to basics: Eat regularly, drink water, sleep, take showers. These are very simple tasks but they are often the first to go when your baby is in the NICU. Remember this is a marathon, not a sprint. Taking care of yourself along the way is the only way through it.
- Anticipate a broad range of feelings: It is entirely normal and expected to experience a full range of emotions. You may experience anxiety about your baby’s health or fear about touching and connecting with your child. You may feel sadness or loss about your birth experience. You may notice anger or resentment cropping up towards those with healthy babies. It is important to acknowledge and accept these feelings. Try practicing self-compassion around whatever emotions arise.
- Watch the self-blame: Many NICU parents blame themselves for their child’s medical status. Often this is an attempt to understand or gain some mastery over what feels like an experience that is out of your control. However, as Meagan notes, “you most likely were not the cause of whatever the reason your baby must be in the NICU, and you most likely could not have prevented whatever the reason is, either. I spent a lot of time wondering what happened and what I could have done differently. This is wasted energy – in many cases, there is no known explanation. Things just happen sometimes.”
- Connect with other NICU families: The NICU experience can feel incredibly isolating. Connecting with those that can relate to your experience is very helpful in navigating the ups and downs. This may mean connecting with other parents whose children are currently in the NICU, or seeking support and guidance from those who have been there before.
- Get to know the nurses: NICU nurses are intimately involved in your baby’s care and will often spend long stretches (8-12 hours shifts) in the NICU. In my experience, the NICU nurses were the best sources of information, support, and guidance. It can feel incredibly comforting to have a point person in the NICU who you feel connected to and can trust.
- Take breaks: As I alluded to earlier, leaving your baby in the NICU and taking a break can feel incredibly hard but it is important to take some time away. As Meagan put it “NICUs are dark, warm places that can be completely maddening. And you never realize how stressed you are when you’re in one until you leave one. Make it a habit to NOT spend every moment of every day in there. Even the nurses leave, at minimum, every 12 hours.” If you just gave birth, taking a break may mean taking a rest on the maternity floor or taking a shower. If you are feeling up for it, maybe grab a meal in the cafeteria or take a short walk in the lobby. If you can muster it, leave the hospital, even for a short amount of time. As Meagan notes, “sunshine and fresh air will do you so many favors.” In her experience, spending some time in the familiar environment of her home was emotional but restorative. For Seema, making time to connect with her husband outside of the NICU was important. She notes that taking meal breaks, taking short walks, and spending time connecting outside of the hospital was a necessary “emotional break.”
- Ask for help: Seeking help from friends, family, or other resources is incredibly useful. This could mean enlisting family to bring food, clothing, or other supplies to the hospital. Or perhaps, asking a friend help take care of your older children or pets. For Seema, this meant reaching out to an old colleague who lived close to the hospital so she could take a hot shower and not have to trek all the way back to her home. As Seema notes “It was hard to ask for help but after all I realized she [her colleague] was more than happy to help me.” There are many wonderful organizations that can assist NICU families who require longer term support such as temporary housing, financial support, and support for siblings. There is a great list of resources here Many hospitals also have child life experts, psychologists, and other specialists on site so talk to your nurses about the resources available in house.
- Run your own race: As I said earlier, surviving the NICU is marathon full of obstacles and turns. For Meagan, this meant letting go of expectations, being flexible, and breathing through difficult moments. In her experience “The world of NICU is [a] give and take. My second born would be off the oxygen one day and back on it the next and off it again the next. Don’t let your hopes get too high and don’t let your hopes get too low. Resolve yourself to take it ONE DAY AT A TIME… sometimes, even one hour at a time. Things can change so radically and so illogically in a short amount of time, and the pendulum swings both ways. Just like in labor, don’t hold your breath – learn how to breathe through the difficulties. Don’t compare yourself or your journey to anybody else’s. Don’t apply somebody else’s benchmarks to your race.”
- Get involved: When your baby is in the NICU it can feel especially heartbreaking not to have a clear role in his or her care. This is especially hard when you cannot hold or feed your baby. In those situation, some mothers find that expressing breast milk to reserve for future feedings helps them to feel connected and involved. Some parents find that making things for their baby (blankets, clothing items), decorating the isolette, or keeping a journal of milestones is a way to assist in your baby’s care. If you can hold your baby, skin to skin contact is a wonderful way to connect. As Meagan notes “The science of motherhood is so crazy. Having your baby skin to skin with you will not only help your baby balance out with their vital signs, it’ll help your hormones balance out. Skin to skin also helps tremendously if you are planning to breastfeed.” Skin to skin contact is also a great way for a partner or spouse to get involved in care.
- Celebrate all victories: An ounce gained, an intubation tube removed, a first bath. No matter how small the milestone, take the time to mark it. It may be fleeting as a baby’s medical status can change quickly, but it’s worth celebrating. Marking these moments of success, finding a spot of joy or hope, taking a second to connect with something that feels positive can be tremendously nourishing and helpful in supporting you through this journey.
And 1 Tip for After Discharge
- Some families leave the NICU with a healthy, thriving baby while for some, the NICU is the first step in a long journey of medical concerns and health crises. Regardless of status at discharge, NICU parents are at increased risk for depression and anxiety after discharge. A recent study out of Children’s Hospital in Washington, DC found that 45% of parents experienced depression and anxiety following discharge from the NICU, and that regardless of medical status of the infant, all parents were at increased risk.
Have a plan in place for your emotional health when you leave the NICU. Find a therapist or a support group, enlist family or friends to help with the baby, take the time to check in with yourself. Yes, you made it to the end of the NICU stay but it may be that you are only just beginning to process the emotional gravity of what happened. Take good care of yourself and prioritize your emotional wellbeing. Remember, that oxygen mask metaphor? It applies here too!