2 minute read
Ada’s Adventure
Ada and her twin brother, Weston, were born extremely premature at just 23-weeks gestation. Both babies were little fighters, but tragically, 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.”
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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. She required surgery to repair a congenital heart defect. In addition, she needed 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 of 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. 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, speech and feeding therapies.
The former one-pounder grew to weigh 19 pounds. Developmental specialists used games and socialization to help Ada learn to laugh and smile. Ada experienced many more milestones and impressive “firsts” at Blythedale. 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 roll over. Speech and feeding therapists taught Ada how to drink out of a bottle, celebrate her first birthday with a cupcake treat, and start to vocalize.
Eventually, Ada was successfully weaned off the ventilator to a tracheostomy collar enabling her to receive small amounts of humidified oxygen.
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. The bittersweet moment had finally arrived for Ada – the 14-monthold was heading home for the first time in her life.
“We never thought she could end up going home without a ventilator,” said Ada’s mom tearfully. “It’s lifechanging. 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 expertly trained clinicians ensured Ada’s parents felt competent and confident in caring for their daughter at home.
In April of last year, 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.”
Thank you to the wonderful staff of Blythedale. You make the hospital special!
Hilary and Perry Hoffmeister
