1. Allow space while letting them know you are there
I am a very communicative person but in the NICU I just couldn’t communicate with people. It was a combination of the stress I was under and the long days in the hospital where I would see a text or a call and forget about it. My favorite messages to get were those that showed me the person cared but didn’t expect a response (ex. thinking of you).
It’s important to not take it personally if people in the NICU don’t respond to you or react the way you think they would to communication or offers of help. It is such a mentally draining time that I feel like others should have zero expectations from those going through a NICU stay.
This is also the one time I think it’s ok to talk behind a friends back. A parent in the NICU may communicate mainly to one or two friends or family members. If you’re that friend, ask then if they are comfortable with you sharing the information they give you so that you can update others who may be sending texts or calling the parent which can cause additional stress.
2. Offer a specific way to help
The key word here is specific. I was nothing short of brain dead in the NICU. I couldn’t remember large pieces of my life so I sure didn’t remember the small details. Help with those small details make a big difference during a NICU stay.
My friends set up a Meal Train for us and some people brought us meals and others sent GrubHub, Uber Eats, etc. This was a tremendous help but there were some nights I would forget to eat or heat food even with these gifts and deciding what to eat was tedious most days.
Here’s a great idea: One friend of ours texted me one day and asked what I was craving and said ok I’ll have that type of food delivered at 8 pm. That was honestly amazing. I didn’t have to think I just showed up and had food.
Another way to help is if there is another sibling offering to help with child care. This was a double edged sword for me because we did have friends graciously offer to watch our son and we did do that but I was always scared of germs. Especially now in the time of COVID, this may be more difficult to help. If you do, I would reassure the family that you are being safe and not sick so that this is not an additional worry for them. If you can, arrange so that you can babysit at their house or pick the child up because coordinating drop offs/pick ups is also difficult when you don’t know when you’ll be at the NICU or not.
Many parents want to be in the NICU as much as possible but also need to take care of themselves and their relationship with their partner and other children. I always wanted myself, my husband or my mom in the NICU room. We created a rotation almost where my mom would sometimes go to the NICU early on the weekends so I could have a couple hours with my son and husband. I felt at ease knowing my mom was there. If you cannot personally go as a NICU surrogate, arrange it so that you can help with child care during the parent’s “rotations” so they can quickly come home shower, maybe spend an hour together, than rotate the next person back to the hospital.
3. Schedule some self-care for parents
Self care in the NICU looks a little bit like maybe changing clothes every day. I guess its not that different than newborn stage but it feels much different when your entire day is spent in a hospital. I suggest buying parents things they can use in the room or at home after a long day at the hospital. I had a friend drop off nice bath bombs on my porch one night and it made me want to take a nice bath even after 16 hours at the hospital.
I also got lots of hand lotions, essential oils (these should be cleared with NICU staff), and sleep masks that could be used in the room. I loved reading magazines during any down time which was rare and I didn’t have the band width for books. I did hear a story about another NICU mom being taken for a pedicure near the hospital which I thought was great.
You could also schedule to bring meals to eat with them. Most hospitals have cafeterias that allow visitors and some NICUs have "family rooms" for the purpose of allowing visitors to bring a meal or coffee and spend some time with the parents.
If not (and this may be the case with COVID), map the area to find a park or even meet them in the parking structure to have a bite to eat. It gets them out of the hospital but not far from it in case they are needed or waiting for doctors to make rounds.
Again, don't be offended or take it personal if they decline. The NICU "schedule" is uncertain. Doctors visit the baby at all hours around the clock so some parents may not be comfortable leaving the bedside but keep trying so they know you're there. Don’t just show up for a surprise visit for this reason. Always check in with the parent first.
4. Acknowledge their fears
Please do not tell them it is going to be ok. I think it’s just instinctual for someone to tell someone in crisis that it will be ok. The truth is having a baby in the NICU will never be ok. You are likely not privy to the details of what is happening in the NICU so it can feel a bit dismissive of how scary the situation is.
Instead say something along the lines of “I am so sorry you are going through this. It must be so scary with all the uncertainty and stress. I know you are strong and will get through it but I am sure it is scary for you right now.” Just the acknowledgment of that fear and stress can help someone in the NICU feel like people are trying to empathize with their situation even if they themselves have never been in a situation like it.
5. Send snack care packages for transit time
Most NICUs do not allow food inside which makes eating even more difficult. However, I did find myself able to eat on the commute to and from the hospital if I had something quick to grab. If I didn’t have that, I usually didn’t eat. Make a care package with granola bars, candy, breakfast bars, trail mix, etc. that parents can snack on during their commuting times.
6. Learn about their new life by doing your own research
If the baby has a known condition or disease, this is the one time I will say google is useful in that sense. Take the time to do some basic research to understand the condition/disease so that when the parents are ready to talk you have a baseline knowledge.
It is really difficult for parents of a baby with a new diagnosis to constantly repeat it and related details. For many, they are still grieving and in shock processing the information. Showing you are taking your time to learn about their baby will mean the world to them.
7. Make sure to include them, especially during the holiday season
The worst part about being in the NICU during any time but especially the holidays is the world goes on while you are living a nightmare. This was honestly one of the most difficult parts of the NICU for me as we spent Thanksgiving, Christmas, New Years and my birthday in the NICU.
Do your best to include families in the NICU but not make them hyper aware that the world is still living and celebrating as if nothing is happening.
My friends got us a Christmas tree and some gifts for our son during our stay. They even came over and set it up complete with ornaments and everything. It was amazing! On that note, some people decorate their NICU rooms to feel more like home (decorations that are unscented are typically allowed but check first). I personally did not decorate because I did not want to make our room more “homey” so don’t be offended if they decline decorations.
Also, be sensitive about inviting people to parties or holiday gatherings. I personally didn’t want to be invited to things but also wanted to be included ( those NICU emotions!).
I err on the side of inviting people but with the imperative addition of letting them know you would love for them to be there and that you know they likely wont be able to make it and it wont be the same without them. This lets them know while you still are celebrating they are not forgotten.
8. Listen
I saved the most basic thing for last and that’s just to listen.You don’t need to feel the pressure to give advice or make everything better.I know its an instinct but many times parents in the NICU just need to talk or vent.It is one of the most harrowing periods in most of their lives likely.Letting them know you are there for when they want to share and are listening to them in a meaningful way is the best thing you can do.
To this day, I look at NICU pictures and cringe but I also remember the love and support and ways people helped us during that time and I am eternally grateful for that. Although I hope no one else has to experience the NICU ever again, it will happen. You can be that help and light for a family in the NICU!