In December of 2019, 17 weeks earlier than expected, my husband and I welcomed our twins, Vivienne and Margot. We were told by doctors and nurses that the journey in the neonatal intensive care unit (NICU) for 22 and 23 weekers would be very difficult – for the babies and for us. Thankfully, for the duration of their NICU stays, which were more than 100 and 200 days, my daughters' nurses used Vocera Ease to send secure text messages and photos of them to us day and night. These personal updates eased our worries and helped us (and our family and friends) feel more connected to the girls when we couldn’t be there.
Vivienne was born two days before Margot. For those two days, I was on strict hospital bed rest, and it was through a Vocera Ease update that I first saw Vivienne. After Margot was born, I couldn’t physically bring myself to visit the NICU right away, so for the first two weeks everything I knew about my daughters, I learned through Ease.
The app allowed us to invite people to our care network. I invited my parents, my in-laws, my siblings, and my husband’s siblings – our whole family. Ease really lived up to its name. Once we had our family set up in the app, it was so easy to keep everyone up to date, and it minimized the burden for me and my husband to update everyone.
I loved that I had the ability to edit our care network throughout the girls’ stays. After about three months, Margot became really sick, so we reduced our network to me, my husband, and our parents. Everything happening was just too much at times for some in our circle.
During our very long NICU stay – 135 days for Vivienne and 224 days for Margot — I fell in love with the Ease app. My girls were born weighing 1 pound, 4 ounces and 1 pound, 3.9 ounces, and just as we were warned, the NICU was a rollercoaster.
The girls’ status changed often, and there were many times when they were critical. I was at the hospital more than I wasn’t. There was a two-and-a-half-month period in the beginning when I just didn’t leave. But when I did go home, Ease updates reduced my anxiety and reassured me. I would jump out of bed in the middle of the night when I heard Ease updates from the night shift nurse. Those updates and photos always let me know my girls were still here – that they survived the night.
Like me, my in-laws became obsessed with Ease; they lived far from us and the updates not only kept them informed but made them feel closer. A few months after the girls were born, the pandemic hit, and Ease secure message updates became even more important to our family.
Before COVID-19, my parents were at the hospital every day. My father attended the girls’ rounds every morning, and my mother would sit with me all day, every day in the NICU so I wasn’t alone while my husband was at work. New hospital safety policies only allowed me and my husband to visit the girls. The nurses knew our parents were relying on Ease updates to stay connected, so they were really wonderful about sending at least one update per shift. Some of the nurses took such special care to get to know us and the girls that our relationship with them has extended beyond the four walls of the hospital, and they are now considered part of our family.
One of my favorite care team communications via Ease came when the girls had surgery. They had about 12 surgeries between them. Through Ease, we got real-time messages and photos before, during, and after the procedure at the discretion of the medical team. The number of updates I received depended on the type of surgery and how involved it was, but sometimes I got updates every 15 minutes.
The Ease updates throughout this long journey helped us so much. I think every NICU and pediatric hospital should have this level of care team communication with families. It’s the most peace of mind parents will ever have while their children are hospitalized.