September is NICU awareness month and as a preemie NICU mom, I felt like I couldn’t let this month pass without offering support to the NICU parents out there. Now, my experience was just that, my experience. Mine happened to be right at the beginning of COVID with all the restrictions for visitation, length of visit, etc. I am happy to hear those things have been more relaxed now. I also have a 30 weeker who didn’t have an underlying medical diagnosis. I am a parent and an advocate, so this is also not medical advice!
If I could give NICU parents some tips, they would be:
Focus on the long-term goal. There are so many ups and downs. Sometimes you live minute to minute, hour to hour and day to day. Take the wins and the loses as they come but don’t lose sight of the end goal: going home. It’s a rollercoaster.
Related to the first one, don’t give specifics to people who aren’t in your inner circle. You are stressed running back and forth to the NICU, taking care of your family at home, taking care of yourself. You don’t want to be responsible for updating everyone on the minute details. The handful of people who are there daily for you, maybe, but not Aunt Sally who lives 4 states away via facebook. Give the general “they are continuing to grow and progress” to keep your sanity of having to relay each individual update.
Have 1-2 people that get it. Maybe it was a former NICU parent, maybe it’s just a really good friend. Pick 1-2 people who you can call and cry to or celebrate with who won’t ask more questions than you are able/willing to answer. The ones that offer their energy when yours is out.
Take care of yourself. I know from experience that this is easier said than done. If you are the birthing parent, chances are you are still healing, you may be trying to breastfeed/pump, mourning the loss of the experience you expected to have and experiencing postpartum hormones along the way. If you are the supporting parent, you watched all of this, are taking care of the birthing parent and trying to juggle all of it. Take care of you. This might look like grabbing a cup of coffee or tea and spending 5 minutes alone. This might be going to do something you want to do or vegging out in front of the tv. Whatever it is, don’t feel guilty. If you aren’t taken care of, you can’t be the best parent you want to be for your child.
Take pictures, videos, and notes. My preemie is now 3.5 years old. Her favorite thing to do is look at her pictures from when she was in the NICU. I have no idea why but I’m glad I took the pictures. The videos remind me just how small she was and all the funny noises she made. The notes remind me how hard we fought and how far she came. Someone gave me a NICU journal and I filled out all of 2 pages. I’m not a journal person. But I took notes in the notes app every time we met with the team and I did social media posts around the big things like first bottle, first bath with me, etc.
Tell the doctors and nurses what you want. I wanted my husband to be the first person to try a bottle with our daughter (since I was attempting breastfeeding). I wanted to put her in her first outfit. You miss out on so many firsts and so many things you expected to have so be bold about the things you want to be there for. That also means, you have to make sure you can accommodate the timing if they are time specific!
Thank the people who make everything a little easier. People will offer to do a million things, but a smaller number follow through with those offers. You will find your favorite nurses/doctors/attendings. Just saying thank you goes a long way. Need something bigger? For friends, send a card, even if it’s months later. For medical professionals, brag about their care to their supervisors in writing (some hospitals have a way to do this or just ask around to find out who to reach out to). Of course cards and treats can be good too!
When you are on the other side of the NICU journey, support other parents going through the same thing. This is the greatest club you never wanted to join. Some of the most amazing people I’ve met have been other NICU parents.
Have anything else to add to the list? Would love to hear from other NICU parents! And as always, if you need support I would be honored to work with you and your family.