In honor of Prematurity Awareness Month, I am attempting to write a post a day (with the exception of power outages). With select posts, I hope to address a different aspect of our prematurity journey.
When I was a kid, a couple of the ladies in the neighborhood went door to door and collected for the March of Dimes. Other than having to do something with babies, I did not know what the March of Dimes did.
I had not thought about the March of Dimes again until after Charlie was born.
After meeting Charlie, I noticed there was a cart in the NICU hallway loaded with books. I looked over the cart and selected a thick book about preemies which became my new parenting guide. The book went everywhere with me during the following week as I made my way through its pages. I remember a label on the book because I picked nervously at the label while I sat in the NICU waiting room. The label read, “March of Dimes NICU Family Support Bedside Reading”.
About a week after Charlie was born, I wandered into my first NICU scrap booking class. I was a mess. I had cried until I no longer could, every breath felt like it took enormous effort, and I was functioning on autopilot in a haze. Scrap booking was the last thing I wanted to do. Despite everything, the NICU secretary insisted that I should go.
Once I arrived at the scrapbooking session, I was warmly greeted by the hospital’s March of Dimes NICU Family Support Specialist. She helped me choose a scrapbook and presented a few examples. There were several other parents who were already busy working on their scrapbooks. Although I could hardly speak, I went to work mindlessly pasting as I listened to the other parents talk.
It was the first of many sessions.
The weekly scrapbooking sessions made what was happening feel normal. It presented the opportunity to meet some of the other NICU parents. Additionally, the sessions not only made taking NICU pictures of our baby acceptable (something I wondered about) but encouraged it. The scrapbooking class was how I learned about milestones that are unique to the NICU. It was a way for me to process what was happening at a time when words failed me.
There is a steep learning curve in the NICU. Medical terminology, equipment, and conditions are suddenly tossed at parents. To understand my baby’s needs and care, I attended classes offered to NICU parents by health professionals. The topics varied such as respiratory care, nutrition, and development. The classes were also part of the March of Dimes NICU Family Support program.
I wanted to expand on the information covered and found a neonatalogy text book in the hospital’s health sciences library. I had plenty of time to read and slowly worked my way through it. I read about the pulmonary surfactant my baby received. The book explained that the March of Dimes had played a role in its research and development.
One morning, around a month into Charlie’s NICU stay, I found it particularly difficult to drag myself into the hospital for yet another day. I couldn’t eat one more bite from the hospital cafeteria, spend one more minute in a very confined space, or withstand one more alarm in the clamor of the NICU. My morale was at a low point. When I finally trudged up to the NICU that morning, a basket with boxes of cookies (provided by the NICU Family Support Program) greeted me in the NICU waiting room. It sounds silly, but the small gesture rejuvenated me. I wolfed down a few cookies, scrubbed up, and resumed my daily bedside ritual.
Charlie came home after three very long months. But, contrary to popular belief, coming home doesn’t mean “it’s over”. It was merely the beginning of another chapter. Fortunately, I am able to connect with other NICU parents for support via the March of Dimes Share Your Story website. Recently, I was able to attend the annual gathering of the website’s users. It was wonderful to meet the other users face to face. I am in awe and inspired by the remarkable people I met.
The story does not end here. I continue to be in contact with the NICU Family Support Specialist (as well as one of the moms I befriended in class). The NICU support specialist was crucial during my NICU parenting journey. Among many things, she was a guide through my NICU experience, my first connection to the preemie community, and introduced me to preemie parenting life. Most importantly, she helped me rediscover my voice and empowered me during a time I felt I had been broken.
I am proud to say that we are a March of Dimes Ambassador Family. I want others to know what the March of Dimes does without having to experience the NICU. Being an ambassador is my way of saying thank you for what we have been given. If anything, I hope to make things better for the NICU families behind us by sharing our journey.
If you’d like to support our 2014 March For Babies team, you can do so at our team page located here.