New book, '100 Days' tells story of micro-preemies journey

Just as most pregnant couples do, Rosemarie and Faye Marzinotto did the whole ‘baby thing’ – went shopping for bassinets, baby blankets, announcement cards, postings on Facebook, the works. It was an exciting time – and their ‘expectant’ extended family members were full of joy and anticipation, especially when the pair divulged that Faye was carrying twins. Doctors estimated the babies would make their entrance to the world on July 16, 2015, but one night at the end of March, Faye knew something was very, very wrong. And from there, the family embarked on a rollercoaster ride that would have mammoth consequences.

“Faye hadn’t been feeling well – and I chalked it up to pregnancy,” Rose said. “But later in the middle of the night, Faye began to rupture – putting both her and the babies in an emergency situation.”

It was the beginning of a journey that would rock the couple to the core, as well as their many friends and family members.

Upon their emergency arrival, doctors at Yale-New Haven Hospital worked to curtail the onset of labor that had already begun, due to a condition called Preterm Premature Rupture of Membranes (PPROMS). Faye was only at 23.5 weeks of her pregnancy (38 weeks or more is full term) and both women knew the situation was dire. Doctors determined the only way to increase the odds of the twins’ survival was to keep them in utero as long as possible – so Faye was admitted and administered all kinds of medications to stop labor and to ‘keep her pregnant’ for as long as possible. The more time the babies were able to develop, the better chance they had for survival.

Even with the miracles of modern medicine working on their behalf, the twins had other plans and decided to make their arrival a little more than a week later on April 9. Teddy was first to make his appearance, at 2.0 lbs. total, while his sister, Kiely, immediately followed at 1 lb. 15 oz. – both a whole trimester early.

Rose said one of the things she remembers was the ‘noise’ that accompanied them as they were rushed to the emergency delivery unit. With two teams of doctors, dozens of nurses and lots of stress, she remembers, “It was surreal. Lots of clattering of instruments, instructions being given, just lots of noise. But once the babies were out and then immediately whisked off to the resuscitation room, it was silent. No noise. No movement. It was as if everyone just held their breath – waiting, waiting.”

When one of the doctors returned from the resuscitation room with news that both babies had been successfully intubated, the immediate level of panic decreased – but Faye and Rose both knew a long, hard journey was about to begin. After being whisked away, the first Apgar scores for the babies were scary – at 1 minute after birth, they were recorded at 3 and 4 – not a good sign. But miraculously, as the minutes ticked by, the scores got better and better – and by 5 minutes they were at 8 and 9.

It certainly was not a ticket to go home and be the happy family they had hoped for – but Faye and Rose took it as a sign, the first of many they would come to rely upon as the days passed by. Rose remembers, “When you’re living your days in the NNICU, you live moment to moment.  If you get even a shred of good news, you revel in it.”

The next 100 days would prove to be the hardest the new parents would ever endure.

Both babies suffered consequences of their premature births. Kiely required one surgery during the first few weeks of her life while at Yale, and Teddy has required several operations since then. In the NNICU, stability is not a guarantee. Faye recalls one night she and Rose left the hospital for the evening and both babies were comfortable and resting. By the time the couple reached their home, the hospital had called, urging them to get back to the hospital immediately.  It was that up-and-down, off-kilter, unstable day-to-day life that became their ‘new normal.’

But in every dire situation, a ray of light emerges. And for Rose and Faye, that light came in the form of the NNICU nursing staff taking care of their newborns. At Yale, every critical newborn in the NNICU unit is assigned to one primary nurse who is responsible for one or two infants for the entire shift. The nurses are so accustomed to the requirements of these fragile babies that they seem to have no fear or anxiety dealing with whatever the child’s medical needs are – whether it’s adjusting breathing tubes, feeding, drawing blood or expertise in handling any situation that comes forth.

“There is only one way to describe this group of professionals,” said Rose. “Angels.  Miracle-workers.”

Spending countless hours each day in the unit, Rose and Faye both came to know each member of the specialized nursing unit and they both agreed, without question, the care delivered by this team was outstanding. “I don’t know how they do it,” Rose said. “I always marveled at the love they had for these children. The soothing touches – the positive attitudes – the kindnesses they gave to the exhausted and worried parents – each and every day. It was inspiring to watch and be a part of.”

Throughout the entire time the Marzinotto twins were ‘residents’ in the NNICU, Rose had kept a diary of meticulous notes. While the notebook was filled with detailed information she and Faye received from doctors, nursing records, medications administered and the like, Rose also wrote about her deepest feelings, all on a day-to-day basis. “Your mind is in such a whirlwind of emotions when you’re in a situation like that – I knew I had to write it all down — it was my way of coping with all that was happening.”

And that is where the story begins, so to speak.

Kiely was released 93 days after her birth; Teddy at 100 days. The Marzinotto’s journey of 100 days finally had come to a close.

About a year later, the elementary school principal decided it was time to turn her detailed notes into something more substantial, but not just to create a future keepsake for her babies.

“During our time at Yale, I had this need to connect with other parents of micro-preemies – especially parents who had encountered PPROMS. What I found during our experience was that there was precious little information available about it – and at many times I felt lost or that we were the only ones going through it, all alone. It was then that I decided if I turned our story into a book, it could provide other parents with hope and understanding. At the very least, it could help guide their own discussions with their doctors – not just at Yale — but everywhere.

The book, 100 Days, was released on Amazon in September and the family is enjoying some local ‘celebrity’ for the short term. The twins, today at 2.5 years old, are ‘into everything,’ Faye said. Medically healthy and happy and boisterous – just as 2.5-year-olds should be.