November 17 is just another Sunday in November. But for the parents of a child who was born prematurely, it is so much more than that. November 17 is World Prematurity Day. It is a day to celebrate, honor, and remember our children who were born too soon.
Crunching the Numbers
According to the March of Dimes, an infant is considered premature if they are born before 37 weeks of pregnancy. In 2018, the state of Michigan had a preterm birth rate of 10.2% and scored a “C” on the March of Dimes’ Premature Birth Report Card. This equates to roughly one in 10 babies being born prematurely. Think about your circle of friends and their children. You may find yourself in the midst of a preemie.
My oldest daughter is one in 10. She was born at 34 weeks, a little over 24 hours after I was diagnosed with pre-eclampsia. She is a sweet and spunky 2.5-year-old who has come a LONG way from a little four pound baby. This Sunday will be a day for us to celebrate how far she’s come and remember where she started.
Feeling Alone
When I gave birth at 34 weeks, I had no idea what to expect. The thoughts that ran through my mind were scary. Conversations with doctors sounded more like Charlie Brown’s teacher than anything I could make sense of. My husband and I were first-time parents of a baby who we had to scrub in from fingertip to elbow just to stand next to.
Advice came in from people we didn’t realize were familiar with prematurity (can we promise to talk about prematurity more?). Helpful advice included that we should try to be there for rounds and make sure we were getting enough rest.
I think about our experience with prematurity quite a bit. The helpful bits of advice we were given were greatly appreciated. However, there are a few things I would have done differently. With World Prematurity Day approaching, I would like to share some things I wish I would have done when I had a premature baby.
Listen to those people who have been there before.
I was confident that nobody else could possibly know what I was going through. I remember crying in the NICU when we had to complete yet another feeding via NG tube (a small tube that runs through the nose straight into the stomach). Our daughter had fallen asleep while drinking from a bottle (suck-swallow-breathe is VERY tiring for a preemie). My mom told me of a friend whose daughter was born prematurely and how one day feeding just “clicked.” I shrugged it off and thought there was no way that would happen with us.
A few days later we were taking our preemie home because she no longer needed her NG tube (among other “goals” she had achieved). Rather than really listening to what my mom’s friend had to say, I shrugged it off and thought I was alone. Oh, how I wasn’t. Take in what those who have been there before you have to say, and take it to heart.
It can be helpful to seek out local groups. Detroit Moms has a wonderful NICU/Preemie support group that is full of local moms who have been there before and want to help you feel less alone.
Quit Googling things late at night.
I would sit up in my hospital room pumping in the middle of the night and googling the same preemie-related things: respiratory distress, pneumothorax, length of NICU stay for a 34-weeker, etc. I would read the same few articles each night, thinking that perhaps this time, it would make me feel better. It didn’t. No matter how many times I read the same article, it was always scary.
Talking to the medical team during rounds and asking questions made me feel better (which, we were told to do. It was the “don’t google” advice that we were never given!). The medical team is there for you. Go to them with the questions you were debating googling. Then rest assured when they provide you with information that is tailored exactly to your little fighter.
Reach out to that person who tells you they’re there if you need anything.
Someone reached out and told me that they had recently had a premature baby. She said if I needed to talk, I could send her a message. I definitely needed to talk, but I never sent the message. I wondered how she could know what I was experiencing. Every preemie baby and experience is different. However, moms need to support one another and take up offers of support, too. So if someone reaches out to you, don’t dismiss their offer.
Take a few days or a few weeks, and when you’re feeling ready, type out your message and hit send. Prematurity is LONELY. I felt alone. Someone reached out to me, but I didn’t feel like I could reach back. If I had, I would have found someone in a similar situation. It would have been close enough to make me feel less alone during a very scary time.
Write it all down.
The NICU gifted us a journal to keep track of our days while we were there. It was part of our “welcome bag,” which I stubbornly didn’t even look inside until the week our daughter was discharged. I only wrote two entries in her journal. I really wish I would have started with how I was feeling on day one. Having a preemie is full of ups and downs and good days and bad days. By the end of her NICU stay, we were feeling pretty confident and proud. In the beginning, though, it was totally different.
Pictures are wonderful, but your concrete thoughts and feelings can also last forever. So write it out. Maybe it’s once a day or once every few days. Writing about how you’re feeling can be helpful in remembering how far you and your child have come.
Prematurity is scary. It can feel lonely, but it doesn’t have to be. This World Prematurity Day, celebrate your little fighter. Remember where they started, and marvel at how far they’ve come since then. But don’t forget about yourself: you’ve come a long way, too, and you’ve learned so much along the way.
