Support During The NICU Journey: Best Resources for Preemie Parents
As I mentioned in my other blog about products for preemies, I am a mom to two kids who both had stays in the NICU. My first born was born 13 weeks early, so that meant we had a very long NICU journey ahead of us. Of course, during my 21 day hospital stay waiting for my daughter to be born early, I had been doing a lot of research on preemies to learn what to expect.
There's a lot of medical information you learn, and you learn it fast. It's sometimes very hard to process all of these terms, along with healing from pregnancy, and also caring for a new baby. It's extremely emotional and unless you have people who also went through it to talk to, it can be difficult. Your family and friends are supportive, but can't understand what it's really like to live through unless they experienced it too. I found some resources that helped me during our 123 day NICU stay that I wanted to share. Some of these groups and online resources I found after we were discharged, but wanted to help be support for other families that were going through the process.
The Grahams Foundation was the first resource I stumbled upon during my search. It was created by two parents whose son was born 15 weeks prematurely and unfortunately lost him after 45 days. They started this to help support other parents after they had two hospital stays for their children. They offer lots of support articles for every topic you can think of relating to the NICU life and after. You can also request a care package for yourself or a family or friend who currently has a child in the NICU.
Another great resource they provide is their mentor program. They will match you up with another parent who already went through this experience and you can be in contact with them to ask questions and get advice.
Finally, Graham's Foundation has their own app, My Preemie App, you can download on your phone. This app is wonderful and lets you track everything during your babies NICU stay including length, weight, head size, any medical changes and much more. You can upload pictures, add "firsts" and keep a journal about how you're feeling each day.
I surprisingly didn't discover the preemie Facebook groups until after we were discharged, but I still follow this group and post now as a "graduated NICU parent," to help other parents. The Micro Preemie Support Network group has almost 12,000 parents in it that share stories of their babies who are currently in the hospital, and many from parents who provide updates on their graduated preemies. These updates give parents, who are looking for support, some hope and positivity of what life looks like after a NICU stay.
March of Dimes
You may have heard of March of Dimes before. They are a nonprofit group that works to improve the life of mothers and babies. March of Dimes has a lot of resources they provide, including many blog articles. They also host a lot of charities and walks to raise money to research better ways to support the health of all mothers and babies. Once we were out of the NICU, I looked up the next March for Babies walk in my area and immediately signed up to raise money. We raised over $1000 and had friends and family with us on the walk showing support. I also chose the March of Dimes as my charity to donate to with Amazon Smile (they donate 0.5% of eligible orders to charity).
I learned about Project Sweetpeas while we were actively in the NICU. They had donated a bunch of care packages for all of the parents. I have also seen them make tiny, NICU-friendly costumes out of felt during Halloween that can be requested. Project Sweet Peas aims to provide support for all families during this challenging time and has an application for food and fuel assistance for parents.
Depending on how your hospital room is setup, you may be able to connect with other parents who are in the same room as you. At first it might feel weird, so you should feel out how the other parents are feeling, but they can be great support. We connected with another family that was in the same room as us while we were there. We were sad (but happy for them) when they were discharged way before us, but we kept in touch on Facebook.
Nurses and Doctors
The nurses and doctors taking care of your baby are a great source for support. Try getting close and connecting with your babies primary (and all) nurses. They're the ones spending the most time with your baby while you're not there and it will make you feel a lot more comfortable when it's time for you to go home for the day. We got really close with our daughters nurses and they felt like our friends by the time we were being discharged. We stayed in touch with them on Facebook as well and even saw many of them at the March for Babies walk. Once I had my son and he ended up in the NICU too, I already felt very comfortable because we already knew all of the nurses and doctors from our previous stay 2 years earlier. They love staying in contact too, to see the babies they spent so many hours with every day.