When the twins entered the NICU, and the words ‘apneic spells’, ‘bradycardia’, ‘PDA’ and ‘intraventricular hemorrhage’ were starting to become part of our daily conversations, I began scouring the Internet looking for stories from other preemie moms. I wanted to hear from people who had made it, and I desperately wanted to know what their lives looked like “on the other side”. Of particular interest to me were the few blogs I found whose children were also micro preemies, or who also had twins, or (most helpful of all) who also had brain bleeds and shunts. I would stay up reading them late into the night huddled in my bed over my laptop screen, taking in as much as I could. When we knew that Madeleine had a bleed in her brain, I needed to read about what could come next, the subgaleal shunt and the head ultrasounds, and the second shunt surgery later on. I needed to read about babies coming home, I needed to read about them growing up, I needed to read about what life was like when your child was developmentally delayed, or needing a shunt revision, or living with cerebral palsy. I just needed to read as much as I could about what my future may or may not realistically look like. I really needed preemie blogs.
Once the babies came home and life became “normal”, I started writing less for day-to-day updating purposes, and more to share my story – both for myself and for other moms. I wanted to give something back to the small community of blogging preemie moms who didn’t even know how much they had helped me, how much it made a difference in those early hours of the morning when I felt like I was the only mother in the world whose babies were struggling. Because of this, I was so happy when Trish at the wonderful NICU Central asked to share some of my posts on her blog for other NICU families. The further away we get from our time in the NICU, the more I realize how incredibly important it is for preemie moms and dads to share their stories, to hear the stories of others, and to be part of some kind of community – big or small, online or in real life – where they can connect with people who understand what they’re going through. And if you happen to be a mom or dad visiting from NICU Central, my sincere hope is that one of my posts might do that for you.