Josie
In September 2015, my husband and I learned we were expecting twins and were thrilled. At We found out we were expecting a boy and a girl. We could not have been more excited!
Each test came back normal and both babies were developing on track. When I was about 24 weeks, I got a headache that wouldn’t go away –
it just didn’t feel right. I called my OB who told me to go immediately to Norwalk Hospital. I went in and told the doctors and nurses I might be overacting. They ran some tests and I was diagnosed with pre-eclampsia, a life threatening condition I was told I would be in the hospital until I delivered and thought, “Ok, no problem.” To my surprise, that meant I wouldn’t get anywhere close to full term – my daughter was growth restricted. I would be lucky to get to 28 weeks. My totally normal and uneventful pregnancy had completely changed. My OB held my hand as and told me a doctor from the NICU would be in. I was certainly shocked and confused as this physician discussed survival rates. That began the fog much of which remains with me to this day. I was transferred to Yale-New Haven, and once at Yale I was focused on staying pregnant for as long as possible.
Unfortunately, I only made it to 26 weeks, 5 days before John Neil and Josephine Mary were born on Leap Day 2016. I had to have an emergency c-section. As fate would have it, when my husband left the OR to put on scrubs, the twins were born and quickly taken to the NICU. Our stay in the NICU was a long and hard journey. Jack was born weighing 1lb. 13oz. and Josie weighed just 1lb. 5oz. at birth. They were both born with severely underdeveloped lungs and required intubation. They were diagnosed with chronic lung disease and while they each had additional
issues, their main issue was always their lungs. Sadly, we weren’t able to bring both of our sweet babies home.
Despite fighting so very hard, our beautiful baby boy Jack had lungs that were too sick and he passed away when he was 8 weeks old. To say it was devastating would be a massive understatement. We will miss and love him every day. He is an incredibly important part of our family and we know he is watching out for his sister, Josie. Josie spent 6 months in the NICU, with many ups and owns. Little Josie had 5 surgeries while in the NICU.
Today she is beyond thriving. She is 17 months old and is catching up on all of her milestones (she’s almost walking!) and is truly the happiest baby in the world. She is always smiling and brings so much joy to everyone around her. She is truly a tiny miracle! We were introduced to Tiny Miracles shortly after the twins were born. Right away, we were sent a care package for the babies and we felt the support immediately. During Josie’s extremely long 6 months in the NICU and additional 3 months in a rehab hospital in NY, I lost my job and Tiny Miracles was able to provide much needed financial support. When Josie came home after 9 months in the hospital, Sela and another mother dropped off supplies, which were a huge help, especially when we were getting used to life at home with a baby on medical equipment. Sela emailed my husband and me regularly with support and kind words that were so comforting to us during such an unstable time in our lives. Having sick children in the NICU is so scary and uncertain and the hardest thing to do is get up every morning and go to the hospital and not know what you are going to be walking into. One spends the day with babies which you may or may not be able to hold that day, and then having to go home at the end of the day without your babies in your arms.
The support we received from Tiny Miracles went so far in helping to ease the pain of our NICU journey and for that we are forever grateful!
Update from Josie’s Mom in 2020:
Today, Josie is a happy, active almost 4 year old who loves preschool (she runs in every morning!) and has lots of friends. She loves Sesame Street, Frozen, swimming in the summer and playing with her dog, Buster!
