By Thomas Doty-
On June 21st, 2012 we headed off for our routine ultrasound. My wife was 21 weeks pregnant with identical twin baby girls. We were extremely excited about our new journey and she had a relatively easy first trimester. That day we were diagnosed with Twin to Twin Transfusion Syndrome. This is where the twins share a placenta and there is an uneven blood flow between them. We went home crushed as we had done some research and the how serious this condition was. With TTTS the mortality rate is 60-100% untreated and it can progress quickly.
On July 2nd we met with Dr. Lynn Simpson at MSCHONY to discuss our options. She was amazing. We left that day with some ease and cancelled our appointment with CHOP. The ease was short lived. Only four days later my wife’s water had broken. She was 23 weeks and 3 days pregnant and the girls were not viable. We rushed to the nearest hospital in fear that we had lost our girls. Her water broke we had to deliver…or so we thought. On ultrasound there were two heart beats and they were strong. So we were transferred to MSCHONY. My wife would be on bed rest, go through heparin shots, steroid injections and courses of antibiotics. The medical staff assured us they would do everything they could. So we wait! The longer they stayed in, the better the outcome. Each day we waited, watching the hours clicked by hoping for another day. The longest of them all was 23 weeks 6 days. Week 24 is the start of viability and the statistics become favorable for survival. This was the D-day (decision day) if they had to be delivered what do we want to do? Do we comfort care or to take all necessary means for survival? The statistics weigh on you. You want to do everything to save your children but what is the right thing to do. We never made a decision we just clock watched and waited for week 24.
Eighteen days after her water broke at 7:30 a.m. The medical team rushed in to let us know it was time. The heart tracing were taking a turn for the worse and it was go time. I got handed the white bunny suit and gave my wife a kiss. I whispered in her ear “It is grandma’s birthday.” May of 2011 my maternal grandmother passed away just before mother’s day. Now on her birthday our new journey would begin. Ava was born first at 1.7 pounds at 8:04 a.m. and a minute later Sophia joined us at 1.3 pounds. I remember Josie asking if the babies were still in but they were long gone to the transitional NICU. They were rushed off to start treatments. This was not the typical delivery where you hear your baby cry and kiss your baby hello.There was no presentation of the girls to us and we didn’t get to hear them cry. This is not what we thought it would be. It was the start of our new normal.
It's amazing at 25 weeks and 6 days, being tiny micropreemies, the girls did not need to be intubated. They were placed on CPAP with minimal extra oxygen support. Things seemed to be going as well as they could. Day of life three Josie was discharged home and we had settled in to take a nap before heading back to the NICU. The phone rang, it was our NICU Fellow, and Ava had free air and needed surgery. We quickly changed and rushed back to the hospital. They decided to place a drain in her abdomen to remove the air and she was intubated. The site of her intubated broke our hearts. We cried. Ava fought on. Sophia gave us the next scare with possible NEC. Once again here is our new normal. My wife stayed by their sides fighting for our children. I would go to work in the morning and then off to the hospital even if for a few minutes. We did not miss a day. The struggles of feeding, breathing, and the dreaded apnea and desat alarms, all became normal to us.
November 7, 2012, a 107 days after our journey began we had graduated the NICU. We have been through hurricanes, minor surgery, multiple blood transfusions, feeding challenges, a lot of doubt and major scares. The journey was not and is not over. We left the NICU with two beautiful girls, friends and a new appreciation of life. The joy of getting 1 ounce of formula or breast milk down became like winning the World Series. It meant our road to home was starting. So on the November day it was our time to take the walk out of the NICU into the snow and finally home. Our girls are here today because of our faith in God, the amazing medical staff at MSCHONY combined with two little beauties that know how to fight to survive. We are blessed to have Sophia and Ava and to be a part of their journey.