It was “a miracle” when Jaxon and Kevin Buchholz were born. Because of a mono-mono pregnancy — sharing the same placenta and amniotic sac — there was a 50% chance they would make it to birth.
After nearly a month in the hospital, Kevin was sent home. But Jaxon has been there since his birth on Aug. 9. He has spent his entire life at Yale-New Haven Hospital and has undergone many surgeries.
As of now, no one is sure when Jaxon could come home.
“We fell in love with Jaxon and Kevin the moment we heard the heartbeat — and then the surprise second heartbeat,” said Katie Buchholz, the twins’ mom, referring to her and her husband, Jeremy.
Jaxon was born with a very rare and serious condition called OEIS complex. He was born with his intestines, kidneys, liver, and bladder on the outside of his body.
Jaxon now has to have a breathing tube and is constantly getting sick. He will continue to have surgeries throughout his life because of his condition, Katie said.
Katie said she visits Jaxon every day for as long as she can, but this recently was made very difficult when she lost her job along with her company car.
The family are doing everything they can to keep in good spirits and stay strong and positive, but some days they find it really hard, said Katie.
“He’s developed new problems, including pulmonary hypertension, and needed a tracheotomy to give him a more stable airway,” said Katie. “We are feeling so many different emotions.
“We’re heartbroken he has to go through all this pain,” she said. “I don’t think there is anything worse than seeing an innocent baby suffer, yet through it all Jaxon still has a smile to share with us each day.”
Katie said she and Jeremy are under a lot of pressure to be sure they’re making the right decisions for their family.
“We’re terrified by the ups and downs his condition comes along with,” Katie said. “We are grateful for each and every moment we are able to have him in our lives, as his prognosis seems to change daily, sometimes hourly. We are amazed by his strength, and as long as he continues to fight, we will fight for him.
She said he has been an inspiration to others, even in the short time he’s been alive.
“He’s earned the nickname ‘Super Jax,’ and he wears his Superman cape proudly. … We celebrate the progress, smiles and laughs we get from our special little boy. He is truly an angel in this world,” Katie said.
“Jaxon is fighting every day to get stronger and healthier, and we send him all our love and support,” said Shelton resident Hannah Perry.
Her business partner Lisa Chiaramonte brought attention to helping this young family. Perry said the Buchholz family needs help, including diapers in size three, formula, and clothes for the twins and in size 4T for their daughter, 4-year-old Jordyn.
The Giggling Pig, owned by Perry, has donated free classes to Jordyn, as she is not able to visit Jaxon at the hospital.
They are also starting a fund-raiser to help the family. Any monetary donations may be made directly at the shop, and clothing, gift vouchers or food are also accepted.
“We hope to be visiting them every couple of days with donations to keep their spirits up,” said Perry. “We can only imagine how difficult it may be for them to not have both babies in their cribs.
“When I visited their home I could see they were in some major need of a plumber, as there was a bad leak in their kitchen. They said they just don’t have the money to spend on it right now and that it would have to wait,” said Perry.
“When Katie showed me the twins’ bedroom, I could see her eyes fill with tears. Only one of the cribs was being used and was filled,” she said.
“My hope is that, by bringing awareness about what this family is going through, other families may reach out and share what they can to help support a family in need. Shelton families are always there for each other and it’s made me proud to live here,” Perry said.
“As a business in Shelton, we all feel extremely fortunate to be a part of Shelton and of a community that stands together and supports one another when they need help,” she said.
For more information or to make a donation, call 203-919-1153. The Giggling Pig is at 478 River Road.