Top 5 Things NICU Mamas Need (But Won’t Ask For)

With both of my babies making their grand appearance so unexpectedly early (one at 30 weeks, one at 26 weeks), my husband and I were lucky to have an outpouring of support. Family members reached out and visited me in the hospital while I was on bed rest for both of my kids. Close friends visited, with their own kids making me ‘Get Well Soon’ cards, and good friends who lived far sent me care packages and flowers. My coworkers reached out often to see how I was doing - and while I was on bed rest with my first, I even had some coworkers visit me in the hospital and bring me a burger (my only craving, and a much needed relief from the hospital food!)

The question I got the most while I was on bed rest, and in the few days and even first week after giving birth, was “What do you need? What can I do?” I was so grateful that people were thinking of me, but also so overwhelmed because I truly did not know what I needed and did not know what anyone could do for me or for my family. Even if I could think of something in that moment, I would not have asked for it because I was too overwhelmed to think of myself. My whole mind, body and soul was with my baby in the NICU; all 58 days of NICU stay for my first son, and all 100 days of the NICU stay for my second boy. Thinking of what I needed or what I wanted in those days did not occur to me then.

But, with time comes perspective. Now that I am months removed for my second baby and years removed for my first baby’s NICU stay, I’ve compiled a list of the top 5 things that were helpful to me (or would have been helpful) while I was navigating life with a preemie in the NICU.

1) Home Cooked Meals & Take-Out Gift Cards - Like any and all new mamas, navigating the first few weeks and even months of having a newborn is tough. Your whole world is rocked and your routine is shot, because it is all on your baby’s time, not yours. And when you have a baby in the NICU, you do not have the luxury of bonding on you and your baby’s time; you bond on the NICU’s care times. Because your new schedule isn’t in the comfort of your home, but rather in the often sterile and shared NICU rooms in the hospital, any comfort foods make all the difference. Comfort to me, meant being able to come home after a long day at the hospital and just being able to heat up an already cooked meal. Or on the weekend, comfort for me meant being able to use a Door Dash or Grubhub gift card to order pizza or some familiar restaurant favorites. I am so grateful for family members, friends, and colleagues who contributed so generously with the gift of comfort and food. Any and all NICU mamas would appreciate not having to think of a human need as basic as ‘What will I eat'? because sometimes even the basics are hard to think about when your baby isn’t with you.

2) (If you have other kids) A Babysitter So Both Parents Can Be at the NICU At the Same Time - There were so many times with our second son, that my husband and I had to divide and conquer with one of us watching our older son while the other went to the NICU to visit our younger son, and then we’d switch. Typically when one of us would visit, the neonatologist or nurse practitioner would want to talk to us and update us on our kiddo. When only one of us was there to hear the message, we would have to relay what we remember to the other person (because we both weren’t there at the same time). It’s not realistic to expect you’d always be there with your spouse - but there were some times that having a babysitter even for just an hour was helpful, because it allowed us some normal moments together with our baby and it allowed us to hear the same message delivered once (from the medical professionals).

3) Reassurance That It is ‘Okay’ To Take Time Off from the NICU and Take Care of Yourself - This one is a little abstract, but it is extremely true. Us NICU moms experience extreme guilt. Guilt when we are at the NICU, that we aren’t doing enough at home. Guilt when we aren’t at the NICU, that our baby will somehow feel we aren’t there and feel neglected. I’ll never forget with my first son, the first day I got discharged from the hospital, I drove home 25 minutes to shower, then was back at the NICU until about 10 PM, and woke up at 4AM the next morning to go back to the NICU. I did this routine for a few days until finally one of the nurses said to me, “Please take care of yourself. It is okay to come a little later or not stay the whole day - you can if you want, but you need to also take care of yourself.” I needed to hear that, truly, because I felt guilty taking any time for myself when my baby was in the hospital. With my second baby, there was another moment when I had a hair appointment scheduled and was going to cancel. One of the nurses encouraged me to keep the appointment and that it was ‘okay’ to take the afternoon off to get my mind off of things. I was reassured, again, that it was okay to do something for myself, and that Max was in good hands and would be here when I got done. The reassurance I got with both kiddos was so needed. I didn’t know it in that moment, but I know now that it was a key factor to my mental health - being told “it’s okay to take care of yourself.”

4) Family / Friend / Work Spokesperson - When you have a baby in the NICU, you realize just how loved you really are. Family, near and far, as well as friends (close and acquaintances) and colleagues, will reach out with an outpouring of support. You may get texted or called multiple times a day, from people within all of these buckets in your life, asking you similar questions: “How is the baby? How are you holding up? What do you need? What is an update on the baby’s health?” I never felt more popular in my life than when I had baby’s in the NICU, and I mean it in the best possible way. People care, people are curious, and people genuinely want to help. The thing is, what is intended as an outpouring of support, can sometimes feel like a downpour on the NICU mama, because it is question overload. I wanted so badly to respond to all of the texts, calls and messages and give each and every person the same level of candor and detail - but that was a full time job in and of itself. Not to mention, things can literally change by the minute in the NICU. What was ‘new news’ five minutes ago, can be old news real quick as your baby’s health fluctuates. So imagine trying to then go back and update all of the people you just told ‘Yup - he is off the ventilator’, with ‘Well actually, they had to put him back on it.’ You will get even more questions at that time - “Why did he have to go back on? Is he okay? What does this mean? How long will he be on it?” Multiple those questions by multiple people - you catch my drift. Having a Spokesperson, or multiple if needed depending on the bucket of people, would have been incredibly helpful for me. I started to do that with family specifically - I would tell my mom and she would relay updates to extended, well-intended relatives, when the time was right, for instance. Bottom line - people just want to help, but it is okay to delegate the updates to someone else in your inner circle so you can focus on your baby and yourself.

5) Hospital Coffee Visits/Breaks - This was a key component to my daily and weekly routine that I believe helped my mental health tremendously. With my first born, it was my dad. He would come have a coffee with me at the hospital cafeteria every day I was there, at the same time in the morning. It would be for about an hour - we would talk about my baby, sports, the weather, family - really anything and everything. This became our little ritual, and was a nice way to break up my day that was spent entirely by my son’s bedside. For my second baby, my parents had retired out of state and were not there physically. That said, I had about one co-worker or friend each week that would meet me at the hospital cafeteria for a coffee and to catch up. I remember looking forward to these visits more than I think they knew - because it allowed me to have a normal, non-medical conversation, have some laughs, and kind of reset my mind and soul a bit before I had to go back to my reality by my son’s bedside. Having a regularly scheduled coffee break (whether it be daily or weekly) was a sense of normalcy amidst all of the medical/NICU chaos and uncertainty. And when there is so much change happening so regularly and unexpectedly in your life, taking a moment to do something as normal and routine has having a coffee somehow made all of the difference.

I hope this list helps you recognize how to support the NICU/preemie mama in your life! And for all NICU mamas reading, remember, you got this!