As paramedics secured Ada in her car seat atop an ambulance stretcher, her mom, Laurena, stood inside their room at Blythedale Children’s Hospital and reviewed her checklist:
1) Ada’s oxygen levels
2) Ada’s tubing
3) Ada’s seatbelt
4) Ada’s “Discharge Day” outfit
The bittersweet moment had finally arrived for Ada, her mom and their family—the 14-month old was heading home for the first time in her life.
Ada was born extremely premature in February 2020 at just 23-weeks with her twin brother, Weston, at Vassar Brothers Medical Center in Poughkeepsie, New York. Both babies were little fighters, but sadly, Weston passed away 16 hours after their birth.
“It was difficult,” said Laurena.
For a long time, Ada was one of the absolute sickest babies and we had no idea if she would even survive.”
Ada weighed a little over a pound and complications from her extreme prematurity resulted in a brain hemorrhage and bronchopulmonary dysplasia (BPD), or chronic lung disease, requiring mechanical ventilation to breathe.
At seven-weeks old, Ada was transferred to Maria Fareri Children's Hospital at Westchester Medical Center in Valhalla, New York for surgery to repair a patent ductus arteriosus (PDA); a congenital heart defect in which an opening exists between two blood vessels leading from the heart. She would later undergo additional medical procedures to place a tracheostomy and gastrostomy tube to help her breathe and receive daily nutrition.
“The goal at that point was to get Ada to Blythedale Children’s Hospital,” her mom said.
In September 2020, that dream became a reality as Ada was admitted for ventilator weaning, intensive therapies, management of her medical complexity and parent training. Upon arrival, she was too weak to move, hold her head up or even play, while her lungs remained reliant on respiratory supports to breathe.
“This is the only post-acute neonatal rehabilitation center in New York State,” said Dr. Dennis Davidson, Unit Chief of Blythedale’s Infant and Toddler Unit.
We accept babies from the tristate area and beyond who come from NICUs, but are not ready to go home yet and we work to get them there.”
With the help of Blythedale’s ventilator weaning program, highly skilled respiratory therapists and interdisciplinary team, Ada’s dependence on respiratory supports lessened. Her lungs began to strengthen and with that came more energy for physical, occupational and speech and feeding therapies.
“The lung has a great ability to regenerate itself with our help,” said Dr. Davidson. “Ada needed rehabilitative and developmental care, nutritional support and time to grow out of this problem, which is what happened because she’s a survivor.”
The former one-pounder grew to weigh 19 pounds. Developmental specialists were also able to use games and socialization to bring back two things that had been missing in Ada’s life—her laugh and smile.
Over six months at Blythedale, Ada experienced many more milestones and impressive “firsts”.
In occupational therapy, she learned how to hold her head up, turn pages of a book and play with toys. Physical therapy helped Ada strengthen her muscles so she could sit up and start to roll over. Speech and feeding therapists taught Ada how to drink out of a bottle, taste purees, celebrate her first birthday with a cupcake treat and make pre-linguistic sounds using a Passy Muir valve.
Eventually, Ada was successfully weaned off the ventilator to a tracheostomy collar enabling her to receive small amounts of humidified oxygen.
“We never thought she could end up going home without a ventilator,” said Ada’s mom tearfully.
It’s huge. It’s life-changing. For the first time, she's breathing on her own.”
While Ada was thriving in her recovery and rehabilitation, mom and dad had their own homework assignment—completion of parent training education. Blythedale’s state-of-the-art simulation lab and Hospital clinicians provide the knowledge and confidence needed to care for a medically complex child when the time comes for discharge.
“One of our main functions is not only to wean the baby off the ventilator, but to also teach parents how to independently take care of their child at home," said Dr. Davidson.
In April, after Laurena’s checklist was complete, Ada was discharged from Blythedale and went home with her parents after 408 days in three different hospitals.
“The amount of support we’ve been given, the amount of progress that Ada’s made; we are so lucky this place is available,” said Ada’s mom. “It gives such a wonderful chance for a baby to grow, develop and get better. Everything is about getting you home.”