I remember the neonatologist coming into my room, but the rest is a little fuzzy. He gave percentages, talked about feeding tubes, and the NICU. He was very matter of fact and even somber with his tone. He emphasized that the longer I could keep my babies inside, the better the chances they had on the outside. I didn’t understand much of what he said, but I did understand that last part.
At this point, I had been in the hospital for almost a week. My Maternal Fetal Medicine doctor had admitted me as soon as I hit 24 weeks. My entire pregnancy had been complicated, so it wasn’t too surprising that this is where I ended up. Even though it wasn’t a shock, hospital life was hard for me. I had a two-year-old toddler that I missed fiercely. I had a husband that was single-handedly moving us into a new house that I had only seen once. It was lonely, stressful, and scary being monitored all the time, yet no one knowing what was going to happen to my babies. There wasn’t a single doctor that could guarantee me that I would go home with two healthy boys.
My journey started at 8 weeks when I found out I was pregnant with identical twins. I was lucky that I had an OB who recognized the twins were sharing a placenta, and she sent me to a specialist at 12 weeks. From there, everything turned upside down. What the doctor thought might be a genetic defect (it wasn’t) at first, we then went to a diagnosis of either Twin to Twin Transfusion Syndrome (TTTS) or Selective Intrauterine Growth Restriction (SIUGR). Basically, the twins were not sharing the placenta evenly, so one twin was not getting enough nutrients.
I was monitored by ultrasound at least once a week, but the twins never showed a severe enough case of TTTS to consider surgery. My only options were to wait and watch and hope. Hope was a hard thing to hold on to during a time of such uncertainty. My blood pressure would shoot up at the beginning of each appointment, and I would cry all the time. I felt solely responsible for those two babies growing inside me, and it was a huge weight I put upon my shoulders.
Luckily, I did find some hope in the form of two women. Through my own research, I found the Twin to Twin Transfusion Syndrome Foundation. The founder, Mary, made herself available to me any time I need to talk, cry, or share things about my pregnancy. We had decided not to tell many people that I was pregnant, since it was such a stressful situation. She also connected me to women who had been in a similar situation the year before. I’m not sure how I would have survived without those two amazing people in my life. Their voices and stories helped me through those days in the hospital, which each seemed like an eternity.
Unfortunately, those long days didn’t last as long as we all hoped. I was only able to keep those babies inside for a few more days after that neonatologist talked to me and my husband. On the morning of May 4, 2012, I heard a very slow beating on the monitor next to me. When I
buzzed the nurse, I was surrounded by a swarm of people. Asking me if I wanted to do everything to save my boys, the doctor on-call whisked me into emergency surgery.
There was no time to call anyone. I remember crying, and praying that both my boys would be alive when I woke up, which is the first thing I asked when I woke up from the anesthesia. They were. Baby A was 2 lbs. 2 oz and Baby B was 1 lb. 7.5 oz born at 25 weeks, 5 days. I was so relieved and happy that they had made it. We had made it. I had no idea the journey we would go on for the next three months and beyond, but for the moment, I finally celebrated both of my boys.
Their NICU journey was not an easy one, but we made it through brain bleeds, surgeries, ventilators, feeding tubes, blood transfusions, and more. It was at this time, I started writing. I needed an outlet for all my emotions. I again felt alone, and that no one could really understand what our family was going through. The NICU is a lonely, scary, stressful place. Yet, it is also a place where miracles happen and every step, no matter how small, is celebrated.
So, I started writing, and I haven’t stopped. My boys are now 6-years-old, but I still remember all the emotions from each step of our journey. I don’t think I will ever forget, and I don’t want to. I want to use my writing and experience to reach other families who need support and hope throughout their own NICU journey.
Hope is something everyone needs.
Shann is a writer, dancer, teacher, and most importantly, mom to three amazing boys. After a full-term pregnancy and birth with her first son, Shann gave birth to identical twins at 25 weeks, 5 days. Her pregnancy and their NICU stay sparked her love of writing and advocating on behalf of premature babies. She raises money for various organizations, and spreads awareness about the NICU journey. You can read more from Shann on her blog, Shann Eva’s Blog at https://www.shanneva.com