My husband and I were stunned that we were having twins, but nothing could have prepared us for Thomas and Colin’s early birth at 24 weeks, 6 days. My placenta ruptured and the boys arrived unprepared to come into the world. One had a stage 3 brain bleed on his left side. The other had an inguinal hernia. Both were on the ventilator for over a month and needed to have PDA Ligation surgery at 5 days old.
There were PICC lines, blood transfusions, … so much for such small human beings to endure. We were told that they might not make it or if they did, they could have cerebral palsy or severe developmental issues.
My husband and I were both wrecks and felt so isolated. We knew no one who had micro preemies and had no idea what to expect while in the NICU. A friend’s wife heard what we were going through and sent us a care package from Graham’s Foundation – an organization that provides emotional support, mentoring and resources to parents of preemies. The care package contained information about what they do, baby preemie
beanies that read “I am a miracle!”, a bracelet and a few more items designed to help us see we weren’t alone.
That care package affected me greatly. Suddenly I knew that someone has gone through this and understands. The package gave us hope.
Thomas left the NICU after 161 days. Colin was discharged shortly after at 165 days. Leaving the NICU with both boys was wonderful but also daunting. We finally started our life as a family, but it was hard because we were leaving our surrogate NICU family. It took so long to stop hearing beeps and alarms in my head but eventually we settled into life at home. A few months later, the boys started physical therapy and occupational therapy. Speech therapy started around 22 months. They continued with this until they were 3 years old when they graduated out of needing OT and PT.
It was during this time that I decided that no other preemie and micro parents at UCLA Santa Monica would go through the NICU feeling alone. I became a NICU Ambassador for Graham’s Foundation and started attending NICU Parent Support group meetings to talk with preemie parents . I also did the same for my twins group, WLAPOM. I volunteered for 4 years until we moved to Northern California. Now I work for Graham’s Foundation as their NICU Outreach Coordinator, contacting hospitals across the country to make them aware of what Grahams Foundation is and how they can help parents through the NICU journey. I also provide app support for Graham’s My Preemie app. It is a wonderful tool for parents of preemies and micros to chart and journal their babies growth, feedings and accomplishments. It is available for iOS and Android and currently in English and Spanish with requests for it to be translated into more languages!
Our boys are now 6 and doing great. They have overcome the odds and worst case scenarios. They are amazingly normal… running, jumping, getting into everything type kids. Yes, they have had some delays but have hit all their milestones in their own time. Their journey taught me so much about resilience, patience and strength and I’m honored to be able to share what I’ve learned with new parents of preemies.