Everly's Encouragement
Donation protected
Firstly, my family is very bad at asking for help but my little sister needs me. My sister's name is Chelsea and her family lives in the San Antonio area. My sister is a labor and delivery nurse in San Antonio and her husband is a sergeant in the police department of a neighboring area. They both help people and go out of their way to make the world a better and safer place. They found out she was pregnant with her second child in March of 2018. The pregnancy went smoothly and Chelsea, her husband and their three year old daughter, Emery, were ready to welcome baby #2 in October. The birth went smoothly and baby seemed healthy until the nurses couldn't keep baby Everly's oxygen up to healthy levels.
Everly was born with Pierre Robin Sequence (PRS). It is called a sequence because one of its features (an underdeveloped jaw) starts off a series of other malformations while a baby is developing in utero. The smaller jaw caused her tongue to form farther back than normal, which causes an airway blockage/obstruction. It also affects how the roof of the mouth is formed leading to a cleft palate. Even with great and thorough prenatal care Everly’s PRS went undiagnosed until birth. It was very unexpected and required a long hospital stay in the NICU.
She has been through two surgeries already and has another in November of 2019. Her first surgery was a jaw distraction where the surgeon went in and broke the jaw bone on each side, attached a lengthening device. For 3.5 weeks the lengthening device was cranked slowly twice a day to force her jaw forward. Then 3 months after, she went through another surgery to remove all the hardware. During the surgery to remove the hardware they did a hearing test while she was under general anesthesia. Results showed moderate to severe hearing loss due to fluid accumulation and small ear canals secondary to PRS. The hearing loss took Everly through another journey to get hearing aids and now she requires therapy for speech, eating, and auditory impairment.
Everly also had a sleep study done which showed a mix of both obstructive and central sleep apnea. She now has to see a pulmonologist to discuss a plan of care for her. She sees several specialists outside of her regular pediatrician including a plastic surgeon, ENT, Neurotologist, audiologist, dietician, speech therapist, and pulmonologist.
Even with the best healthcare plan offered by Chelsea’s employer, the medical costs of the NICU stay, appointments, specialists, therapy and surgery have all added up. Everly still has a cleft palate repair surgery to go through in November. Medical bills continue to come through the mail and have added up significantly. Even with both parents working full time, the payment plans required to pay off the bills are 5 years long.
My family and I would be overwhelmingly grateful for any and all help that can be given by those who are able.
Everly was born with Pierre Robin Sequence (PRS). It is called a sequence because one of its features (an underdeveloped jaw) starts off a series of other malformations while a baby is developing in utero. The smaller jaw caused her tongue to form farther back than normal, which causes an airway blockage/obstruction. It also affects how the roof of the mouth is formed leading to a cleft palate. Even with great and thorough prenatal care Everly’s PRS went undiagnosed until birth. It was very unexpected and required a long hospital stay in the NICU.
She has been through two surgeries already and has another in November of 2019. Her first surgery was a jaw distraction where the surgeon went in and broke the jaw bone on each side, attached a lengthening device. For 3.5 weeks the lengthening device was cranked slowly twice a day to force her jaw forward. Then 3 months after, she went through another surgery to remove all the hardware. During the surgery to remove the hardware they did a hearing test while she was under general anesthesia. Results showed moderate to severe hearing loss due to fluid accumulation and small ear canals secondary to PRS. The hearing loss took Everly through another journey to get hearing aids and now she requires therapy for speech, eating, and auditory impairment.
Everly also had a sleep study done which showed a mix of both obstructive and central sleep apnea. She now has to see a pulmonologist to discuss a plan of care for her. She sees several specialists outside of her regular pediatrician including a plastic surgeon, ENT, Neurotologist, audiologist, dietician, speech therapist, and pulmonologist.
Even with the best healthcare plan offered by Chelsea’s employer, the medical costs of the NICU stay, appointments, specialists, therapy and surgery have all added up. Everly still has a cleft palate repair surgery to go through in November. Medical bills continue to come through the mail and have added up significantly. Even with both parents working full time, the payment plans required to pay off the bills are 5 years long.
My family and I would be overwhelmingly grateful for any and all help that can be given by those who are able.
Co-organizers (2)
Marion Marxer
Organizer
San Antonio, TX
Chelsea Krueger
Co-organizer