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At the time of the birth of their adopted son Zyon, now 5, they had already been foster/adoptive parents for seven years; their family included several children with medical and special needs. Born extremely

premature, Zyon would come into this world at 22 weeks, defying the odds of survival, but needing extensive life support, including a breathing tube and ventilator care.

After 267 days in the hospital, and a stretch with an interim foster host, the Stantons welcomed Zyon into his forever home with open arms.

Staying Alive Against All Odds

Zyon’s early arrival, with him weighing just one pound, four ounces, and experiencing respiratory failure— due in part to limited prenatal care and substance abuse by his birth mother— necessitated multiple surgeries (tracheostomy and g-tube) and ventilator support to provide proper breathing. The growth and development of his respiratory system that should have occurred in utero was now happening in the NICU at Golisano Children’s Hospital (GCH).

Extremely pre-term babies born between 22 and 26 weeks of pregnancy are at high risk for long-term health and developmental problems. Zyon had proven his will to live, but staying alive was just the beginning.

Throughout the first year of his life, Zyon showed signs of neurodevelopmental impairment and was diagnosed with global development delay as well as cerebral palsy. He was born with vision loss in both eyes, and he still depends on a wheelchair, walker, and ankle-foot orthoses (AFOS) braces to move around.

Zyon’s care teams at GCH— including doctors, nurses, and others in the NICU— worked together to make challenging decisions on his behalf.

Laine Dinoto, NP, a pediatric nurse practitioner specializing in otolaryngology at GCH, joined Zyon’s care team in 2020. She said survival rates for those born at or around 22 weeks have increased tremendously in the past five years, but at the time of Zyon’s birth, these rates were still pretty low. Zyon’s birth weight of almost two pounds likely aided his survival.

“It’s miraculous that he was born that early and is thriving today, because at 22 weeks, the body is just not developed yet,” she said. “There’s such incredible risk with viability and making it out of the NICU. If you get to the point of going home, it’s common to leave with a lot of equipment. Kids like Zyon need a lot more support for their bodies to grow.”

For babies with breathing difficulties, care teams don’t typically rush into tracheostomies, opting instead to intubate with an endotracheal tube.

“We try to wait with kids because it can
go either way,” Dinoto said. “It’s such a huge decision that changes that kid’s trajectory in terms of getting home and what home life is going to look like.”

Going Home Meant a Crash Course in Medical Training

 Getting Zyon home with a ventilator and tracheostomy required his caregivers to learn the ropes and prepare for having a scaled-down hospital room, Dinoto explained.

“You’re recreating what we’re doing in the NICU, where you have all of these nurses and doctors caring for you one on one, and you have to be prepared to do all of that at home,” she said.

After nine long months in the hospital, Zyon first went home with a different foster host. Because the Stantons had experience fostering and raising adopted fragile children, when they heard of Zyon’s availability, they were able to bring him into their family.

“He didn’t come home to us until he was almost two,” said Avery. “Though we knew of him and about him through the foster care agency. We knew he would eventually need a foster home, and we just kept tabs on him throughout his early journey.”

They knew his care would be constant, but the Stantons were up for the challenge.

“Bringing him into our home was never a problem we weren’t willing to tackle, but it does come with a lot of patience and practice.”

Signing and Throwing Kisses from His Forever Home

 Zyon uses some sign language, and use of an augmentative and alternative communication device has really helped him find his voice.

“When he came to us he had no signing abilities and could barely sit up, and he didn’t have a lot of skills, because the first two years of his life were mostly just spent keeping him alive and stable,” said Avery. “He’s become a pretty outspoken little guy. He makes his opinions known!”

Early on, Zyon had some sicknesses and had to constantly use the ventilator, and now he can come off of it for short times. Kristy said Zyon can better move with a walker and by holding hands now, and also eats some food by mouth.

In many ways Zyon, now 35 pounds, is a typical kid within his family, which includes brothers Jaycek (10), Daycen (9), Bensyn (8), Kyden (8), and Oryon (5).

“He loves to be affectionate,” said Avery. “But he plays and fights with them and they all annoy each other like siblings do.”

The boys love to set up obstacle courses around the house for Zyon to play on and they join in with him. They will watch YouTube videos together and play cars with him. He connects with his family by giving some of the best hugs ever, by throwing kisses, and by coming to them when he wants or needs something.

By progressively gaining stability and spending less time on his ventilator (which they hope someday he will not need at all) Zyon has no surgeries on the horizon and only needs routine check-ups every six months.

“In clinic, he’s such a ham!” said Dinoto. “He has a lot of expression and personality. In many ways, he’s a typical five-year-old. When we hear about kids that are differently abled, it’s easy to put a label on them and assume that they cannot do normal things. He’s thriving in an environment where he is able to laugh and play and grow and develop and that’s really awesome.”

The continuation of care at GCH has been excellent, according to the family, with lots of support when Zyon’s parents have questions or needs that arise. Zyon’s primary care doctor is also at GCH which aids in building a more unified team, and the family has a nursing care coordinator to help address any medical equipment needs.

“We keep in contact and everyone helps keep visits very open and honest,” said Avery. “Really, we have that with all of his providers. We have a long-standing, great relationship with Colleen Hill-Sober in Gastroenterology and same with those in Pulmonology. We’ve been with all of them for years now, so it’s wonderful. I feel like the providers really trust us and trust that we know and are doing what is best for him.”

Even when a concern arises, the Stantons can run things by Zyon’s providers and brainstorm solutions.

“When you have confidence in yourself as a caregiver, it makes the everyday stuff a little less scary and a little less stressful. We have the tools to be successful at home.”

This kind of progress keeps the Stantons hopeful as Zyon continues to grow and learn. Already he’s developed a love for rollercoasters. While his earliest days may have started on an uphill climb, the thrill is found in coasting at speed through the loops and curves, thriving, and being surrounded by love and support.

“He loves to be active by swimming and playing and spending time at the YMCA,” said Kristy, who was herself adopted. She said the family hopes to continue to foster and adopt as long as they can.

“We saw the need (for adoption) in our own neighborhood,” said Avery. “We hoped that we could support children and families. Our adoptions happened when reunification wasn’t possible and we couldn’t be happier with this journey.”