Over 200 Days in the NICU, A Pandemic, and the App that Helped My Family Get Through It

Mar 02, 2021 at 10:28 am by pj




In December 2019, my husband and I were busy getting ready for the holidays. Yet, this year was a little different from years past because I was expecting twins who were due in early spring 2020.


The twins; however, had other plans. On December 14, 2019, I went into early labor, and our daughters Vivienne (22 weeks 5 days, 1 lb. 4 oz.) and Margot (23 weeks 0 days, 1 lb., 3.9 oz) were born. They were rushed to the neonatal intensive care unit (NICU) where they would begin a long, challenging journey before they could join us at home.


The doctors and nurses warned us that the road ahead would be difficult for both the twins and us. Great strides have been made in helping 22-weekers survive, they told us, but it would still be a day-to-day struggle.


Vivienne’s stay in the NICU was 135 days, and Margot’s stretched to 224 days – their stays were filled with emergencies, surgeries, medications, and roadblock after roadblock. I wanted to be with them every single moment, sharing my “mom energy” in hopes of speeding their improvement. But naturally I could not.


Fortunately, the hospital had a solution that could keep me connected to my babies when I couldn’t be by their side – a secure messaging app called Vocera Ease that enabled the doctors and nurses in the NICU to send real-time updates about the twins in the form of secure text messages, photos and videos. My husband and I, our parents, a few other family members we included in the network, received the secure updates on their mobile devices.


Communication from the care team via the Ease app started immediately after Vivienne was born. She came two days earlier than Margot, and until Margot was born, I was on strict hospital bed rest. So, the first time I saw Vivienne was through a photo on my phone.


When Margot finally arrived, she was also immediately rushed to the NICU. I couldn’t physically bring myself to be in the NICU all day those first few weeks. I would go for an hour or two, so a lot of what I learned about my girls during that time I learned through the app updates.


After those early days I spent almost all my time at their bedside, but there were times when I did have to go home. Fortunately, the app was able to keep me updated about my girls’ struggles and triumphs when I wasn’t there. And there were plenty.


I felt so fortunate to be able to see that information immediately instead of having to call, be on hold, and take my daughters’ nurses away from taking care of them. At times that meant I would jump out of bed in the middle of the night when I heard the app’s chime, knowing there was an update from the night nurses. But I would feel so much better once I saw that my girls were still with us.


The same was true for the 12 surgeries our girls had between them. We were able to receive real-time updates and photos before, during, and after each procedure at the discretion of the medical team. In some cases the updates came every 15 minutes. Those were probably the most nerve-wracking times. Being able to stay updated instead of having to wait hours for the surgery to be finished to hear how it went was a blessing beyond words.


The app was also helpful for keeping our families informed. Ordinarily in a touch-and-go situation like this there are a lot of phone calls, texts and emails asking how the girls are doing. It can be exhausting, especially when you already feel like you are running on fumes. With the app we were able to set up a care network so everyone who wanted could receive the latest messages directly instead of having to ask my husband or me.


When Margot became really sick, about three months after she was born, it felt too vulnerable to have so many people receiving updates. So, we reduced our circle to just ourselves and our parents.


Luckily, my parents live nearby so they would come to the hospital every day before the pandemic started. My father attended the girls’ rounds every morning, and my mother would sit with me in the NICU all day, every day while my husband was at work. Then COVID-19 hit, and suddenly only my husband and I could visit the girls. Fortunately, the nurses knew how much both sets of grandparents cared and were wonderful about sending at least one update per shift.


I simply cannot say enough good about this app and how effectively the team at the hospital used it. These were some of the most trying times my husband and I faced or can conceive of ever facing. Being able to stay updated throughout this long, difficult journey is how we made it through. I can’t imagine what our lives would have been like without it.


I sincerely believe every hospital should have this type of communication technology available for the families of their patients, but especially NICUs and pediatric hospitals. It makes a world of difference. You can bet if anyone asks where they should have their babies, I will recommend my hospital – Orlando Health Winnie Palmer Hospital for Women and Babies.

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