My boy/girl twins were born at 30 weeks 2 days gestation, after 20 weeks of strict home bed rest and Antepartum bed rest (hospital). My twins were in the NICU for 5.5 weeks and we had a serious scare when we were told that my daughter, in NICU, had 18 hours to live due to the development of Atrial Flutter as a result of a PICC line insertion. Thankfully she survived and we eventually discharged home with both kids. They did well for a while until we started having severe feeding issues as a result of a missed diagnosis of severe Silent GERD (reflux). We’ve had many years of PT, OT, and SLP services as well as years of neuropsychological testing done.
My twins have had issues that persisted beyond the NICU and I was eventually diagnosed with Post Traumatic Stress Disorder (PTSD). Until then, I hadn’t even known that non-veterans could get PTSD. Having preemies was very difficult; I felt very alone in my experiences and hopeless for the future. Today, my twins are 11 years old and in 6th grade! We’ve overcome a lot and while the road hasn’t been easy, we can look back and see how far we’ve come. We’re grateful for every milestone, their good health, and every minute we’ve had with our twins. Plus - I’m doing great and I don’t live anymore with the effects of PTSD interfering with my daily life.
Many parents live with the trauma of the NICU/prematurity and many have kiddos with ongoing medical issues. When my twins were born in NICU back in 2006, little was understood about the emotional impact of having a preemie or NICU baby. I desperately needed peer support and couldn’t find it for myself. In 2013, I started a regional support group for parents in the Seattle area. I decided that I could do something tangible to combat the devastating emotional trauma that parents face – by creating a space for parents! We work to promote connection and support for families while giving parents information pertinent to prematurity and its effects. WE NEED EACH OTHER! We have a lot of fun too! I mean, who else really understands our obsessions with hand sanitizer and can joke with us about it (without offending our sensitivities)? Seattle Parents of Preemies services are free to all families - we just want parents to know that they won’t be alone!
My encouragement to you, NICU/preemie parent: find the support you need! There are lots of great support groups available all over the US – join one! And if one doesn’t exist….start one! Why not turn your nightmare into something good for yourself and others? I’ve attached a picture of my 30w2d gestation twins today! Thank you TODAY Parents for shining a light on prematurity and giving parents a voice!