When we found out we were pregnant my husband and I couldn’t be happier, when we found out that we were having twins we were shocked but none the less ecstatic. We were having identical twin boys, and what followed was anything but normal. Not only were we having rare identical twins but they were mono-di twins meaning they shared a placenta but had separate amniotic sacs and to add to this unusual situation they developed twin-to-twin transfusion syndrome. At 23 weeks we were headed down to the Children’s Hospital of Philadelphia to meet with specialists who would go on to perform an in-utero procedure (radiofrequency ablation or RFA) to reduce our pregnancy to a singleton. It was the hardest decision of our lives but we had to give at least one of our boys a fighting chance. I was put on bed rest and after 10 days in a hotel in Philadelphia we were headed back home where I was to continue bed rest indefinitely. Well that only lasted another three days before I began to have contractions (a complication from RFA procedure), when I arrived at Stamford hospital I was already dilated. The doctors worked to keep my contractions under control with the hope of transferring me to Yale New Haven that night, we never made it to that point. I was rushed to have an emergency c-section and our son Braden Nicholas was born at 25 weeks weighing 1lb 7oz, 12.5 inches. He was transferred within hours to Yale. I was able to see him for a brief moment before he was put into the ambulance, I had the smallest face I’d ever seen staring back at me. I was unable to see him for the next 5 days until I was discharged and had to rely on my husband’s updates and cell phone pictures, it was the longest hardest 5 days I’d ever had to deal with. We went on to spend the next 187 days in the NICU.
Not only were we dealing with Braden’s early arrival but also dealing with the loss of his identical twin Nicholas. There were so many emotions we had to deal with and never would have imagined we would end up here, our world was turned upside down. After reaching out to TTMF for post NICU care recommendations, even though this was still months away, I was connected with other mothers who had recently shared the same journey. Knowing that I was not alone in dealing with this situation was comforting and reassuring. It allowed me to put things in perspective and gave me the strength I needed to get me through what would be a long road ahead of us.
25 weeks weighing 1lb 7oz, 12.5 inches
Braden struggled weaning off the ventilator; his lungs were severely underdeveloped as a result of his gestational age combined with the effects of the twin-to-twin syndrome. His kidneys were also unable to handle any dosage of Lasix needed to help him get off of the vent. It took him 2 months, a short set back to the oscillating ventilator and a round of steroids before he was extubated. From there he took his time on CPAP before we moved on to the nasal cannula (which he still uses to sleep). It was like Christmas morning when we walked in to see the ventilator gone, we were on our way! There were times when we thought we would never get out of there, seeing other families come and go, but the day finally came when we got to walk out of those doors with him in tow. He fought hard for those 187 days and we still see the fight in him as he works with his physical therapist and speech therapist to meet his milestones. We are still working on feeding (Braden never really developed his suck, swallow, breath skills do to the prolonged time on the ventilator) but he continues to make improvements every day. He is the happiest little boy despite all he has been through. We recently celebrated year 1 surrounded by friends and family.
To all of our fellow NICU families hang in there, know you are never alone and there are people to help you though each day giving you the strength you need to care for your amazing little miracles.