Recounting the heart wrenching and traumatic details of my high-risk twin pregnancy, delivery, and NICU stay makes most people uncomfortable. There’s the awkward silent pause before scrambling to find the right comforting words. “Wow.” “That must have sucked.” “Geez, I don’t know how you did it, I would not have been able to do that.” The varying versions of the latter are my personal favorite. Well, I think to myself, “I didn’t have a choice, I had to get through it.” To quote myself in Together Again, “I had to be strong and carry on.” And that’s how the dialogue went with different friends or acquaintances with whom I shared my story. But I didn’t let it deter or quiet me. I didn’t silence my voice. I knew even four years ago that I had to share my story. No matter how difficult it was to relive those details. I knew I had to keep sharing my story to help other women and families.


Almost two years after Katie and Lauren were discharged from the hospital I was asked to join the Children’s Memorial Hermann Hospital newly-formed Parent Advisory Council. I was honored to have been asked to be a part of this group. It was there that I had finally found other moms and dads that had also experienced their own pregnancy tragedies. This group, our Council, became our safe space where we could openly share all of those details from that painful and emotional time in our lives. My passion for the Parent Advisory Council grew, and a year after the council was founded, I was offered the role of Co-chair. I began to seek opportunities from different organizations and non-profits that had similar goals as ours to see if there was a way we could collaborate and work together. It was through my friend and Executive Director of Hand to Hold, Kelli Kelley, that I discovered the Preemie Parent Alliance Organization. This is an international network of organizations that offer support to families with infants in the NICU. I had a feeling when I was signing up as a member that I had just joined a very special group with like-minded individuals, and I was excited to learn more.


A couple of weeks ago I attended the annual PPA Summit in Washington, DC. It was an incredible weekend. I felt like I had finally found my larger tribe. It was as if the PAC was my immediate family and this was the extended family reunion. I received such a warm and friendly welcome from the members. I had several members reach out to me personally and send me messages telling me how excited they were to meet me and excited to buy my book. I had never before felt such a connection with a group of people I had just met. It was like they knew me and my story, even before hearing all the details. It’s because there is something about the NICU experience that bonds strangers as if they were family.


Throughout the weekend I was able to learn from everyone else including their organizations and the work they were doing. Many of the members have non-profits that help NICU families through peer-to-peer support, education, gift baskets. It was so humbling to see this large group of former NICU parents now serving as NICU leaders and advocates.


Once again, I feel I have been blessed to find this amazing group of people who share a story similar to mine and who have the passion to become strong NICU leaders and make a difference in families’ lives.


Our group talking with our two fabulous presenters: Lisa Stewart from PCORI and Sarah Vittone, a professor at Georgetown University