With time and perspective come wisdom. Knowing what I know now, there are some things I would have done differently during our NICU stay. It’s interesting to think about having “regrets” about a NICU stay. But here you go – here are the three things I would have done differently!
Attended the NICU Parent Group from the start
Our NICU has a weekly time for parents to get together. It is sponsored by social work, child life, and music therapy on a rotating basis. Many NICUs have something similar for their current families. I went to our parent group, but not until we were two months into our stay. I wish I would have started going from day one – or at least week one!
It was great to meet other parents (mainly moms, but some dads) who were walking our same path. Although our family and friend support was amazing, they didn’t really “get it” when it came to our NICU stay. They hadn’t walked in our shoes. While they were very sympathetic, it wasn’t until I met moms from the parent group that I really found that empathy from someone on our same journey.
There is a lot more online support than there was eight years ago, but don’t discount the impact of meeting people IRL! And I would submit that the friendships you form in the NICU will last for years to come.
Made self-care more of a priority
It’s easy to completely immerse yourself in your NICU baby, cares, pumping, tracking stats, etc. And while it seems like stating the obvious, you need to take care of yourself, too. It’s the old, “If you are traveling with a child, secure your own mask first, and then assist the other person.” Basically, take care of yourself so you can better take care of your baby.
I had an eye-opening incident about two weeks into our NICU stay. I had a bad headache that I just couldn’t shake. My husband was encouraging me to drink water, but my head just wasn’t getting better. We went to labor and delivery to talk to a nurse who had taken care of me there. She ended up putting me in a room and getting me hooked up to an IV. I proceeded to get 2 liters of saline! I guess I was “a bit” dehydrated!
My point is: take care of yourself. Stay hydrated (both for your health and your milk supply), try to get enough rest, eat healthy meals, and give yourself permission to take breaks. Whether it’s going for a walk, reading a chapter in a book, knitting, talking with a friend, or going home to sleep in your own bed, do something for yourself. These things will not only help you physically, but they’ll be good for your mental health, too.
Had greater transparency on our Caring Bridge page
First, I would strongly encourage you to document your NICU journey. That may be a Facebook group, a group text or email, or something designed specifically for tracking a medical journey such as Caring Bridge or Post Hope. We opted to use Caring Bridge, and shortly after our son was born, I created a page for him.
To me, journaling and writing updates served a dual purpose: it allowed me to do an “information dump” to provide a large number of people with updates instead of having to repeat everything over and over. It was also therapeutic for me to write about what was going on, our ups and downs, and capture the details which I knew would be right out my head with post-pregnancy-brain and mommy-brain!
But what would I do differently? Well, I would try to be more transparent. There were several times where we almost lost our baby. While I didn’t totally gloss over the bad days, I wasn’t as open as I could have been. I wish, in retrospect, that I had captured more of what was going on, what we were feeling, and the challenges we were facing. At the time, I didn’t want to seem overly dramatic and come across as attention seeking. Now, I wish I had more of my raw emotion captured of those hard days, not for me to dwell on and re-live, but those days are as much a part of our NICU story as the good days and milestones.
While I wouldn’t choose to have another NICU stay, I would do these few things differently, knowing what I know now.