March of Dimes Gretchen Carlson Advocacy Fellowship Meetup

It's hard to put into words how incredible the past few days have been. I met and began working with the strongest, most accomplished women, whose passion for women's health and premature babies almost always stemmed from their own amazing personal stories and experiences. I shook hands and told my Senator and a staffer from my congressman about Nicholas, my hospital, and the doctors who saved his life, and advocated for the PREEMIE Reauthorization Act, which will fund research into the causes of prematurity and maternal mortality rates. Here is a quick summary of each day: Sunday After landing in DC, I checked into my hotel early and took advantage of being child free by walking around the shops at Union Station, drinking a latte in peace while it was still warm, and getting a manicure. The only scheduled activity of the night was a meet-and-greet/cocktail hour so that the fellows could meet and get to know one another. Prior to Nick being born, I knew nothing about the NICU, and only distantly knew of families who had a NICU baby. This was the first time I talked to a mom who had been in some version of my shoes, and talking about our shared experiences was powerful and healing. Stacy Stewart, the president of the March of Dimes, told us the following morning that we become advocates the moment we tell our story, and I think something as simple as telling another mom about what it was like to hear healthy babies crying through the walls of the postpartum wing of the hospital and knowing they are being comforted by their mothers, while your child is alone, on a different floor, on the first night of their life, and knowing that they really know and understand what you felt, and what I will never be able to fully articulate, was a very powerful and moving experience. I felt such a bond with the other ladies immediately. Monday After breakfast Monday morning, we heard from Gretchen Carlson, who started our fellowship, and Stacy Stewart. They discussed how often topics labeled as "women's issues" have a negative connotation, as if they only concern women and aren't a man's problem. The most powerful take away from this session is when Stacy began discussing how so many women are hesitant to talk about their premature baby, because they feel such guilt and shame because they perceive their child's prematurity to be their fault. She articulated what I struggled with in the days after Nick's birth so well that it made me cry (she actually stopped the talk to ask if I was okay), and still makes me tear up as I write this. After Stacy and Gretchen spoke, we heard from a social media expert about how to best get our message out and connect with likeminded men and women on Twitter,Instagram, etc. During this session, I brought up how I struggle with lumping myself in on social media in the same category as mothers of micro preemies, or women who have lost a child to prematurity. Another fellow responded that, though our stories are different, the NICU is a trauma that affects every mother, no matter how long or short her child's stay in the NICU was. Your NICU story is your story, and no one should discredit it. It was definitely the perfect response to my question, and gave me so much more confidence to continue to shout from the rooftops about what happened to Nick and I. Next, we heard from Mary Bono, a former representative, who shared advice about how to advocate and connect with members of Congress and their staffers. After lunch, a panel of lobbyists taught us more of what to expect on Tuesday when we go to the Hill, and taught us more about what makes politicians and staffers tick and how to best get our message across. Our day concluded with a presentation on the PREEMIE Reauthorization Act and the Maternal Health Accountability Act, the two bills we would be advocating for (see my pictures for more info on these bills!) After a short break, we headed to a casual dinner to end the day. I think dinner was actually the most powerful part of the week, because I was able to really talk and get to know more about the other fellow's backstories and reasons for wanting to be involved with the March of Dimes. Several of the fellows have lost a child, or had a baby in the NICU. Hearing about how they live with their grief and honor the memory of their child, or how they endured the ups and downs of the NICU and live with the consequences of prematurity and cope with the anxiety and guilt that lingers after bringing their baby home, was without a doubt one of the most profound and moving experiences of my life. On a more pragmatic level, it was really interesting the hear how different NICU's operate, and gave me so many ideas of programs I can start and ways I can improve my own hospital. I went to bed that night feeling emotionally and physically exhausted, but so full of passion for the advocacy work I would do the following morning. Tuesday Today, I was off to take on Capitol Hill. My first meeting was with Senator Todd Young,and, though we weren't able to schedule a face-to-face meeting with him or a staffer, we went to the Hoosier Huddle, which is a chance for constituents to have coffee with the Senator and share their concerns. It was another amazing experience, because I was able to shake the Senator's hand and thank him on behalf of my son for his leadership and work to improve maternal and child health in Indiana. Senator Young seemed genuine and thanked me for sharing my story with him. Next, I met with one of the staffers of my congressional representative, Andre Carson. This was particularly neat because I was able to talk about my hospital, which is also in his district, and share exactly how excellent they were for us, but also how there is such a potential for growth and improvement when it comes to improving the care for mothers on bed rest, in the NICU, and after they bring their babies home. I was nervous to meet with my representatives and definitely should have brought along deodorant in my purse, but it was powerful to not only share the statistics of prematurity and maternal mortality in the US, but to let these politicians and staffers know what it feels like to be a mother of a prematurity statistic, and the lasting toll it takes on your mental health to see your child lying in an isolette. I tried my best to stress how important it is the fund research into the causes of things like placental abruptions, and not just for the sake of science, but because it kills babies every day and so easily could have killed my son. I like to think my story resonated with them, and it really was a privilege to speak on behalf of women like me who don't have the resources or ability to go to Capitol Hill themselves. It really was a life changing weekend. I truly believe working with NICU moms is my calling in life, and to look back on everything that has happened over the past few months and believe that it was all leading me to this work gives me chills. I am so full of ideas that I want to take back to my state about ways to improve, and am so excited to get started.