Hi! My name is Brianna and I’m creating this GoFundMe for my sister Aubrey and brother in law Ryan as they face many medical obstacles with their newest baby girl Haven.

Haven was born on October 15th as what we thought was a perfectly healthy beautiful baby. After having some troubles with feeding and latching, they asked the nurses to check for lip ties or tongue ties to hopefully figure out the feeding situation. About 12 hours after Haven was born, nurse had suspected that she had a cleft palate- which was leading to the difficulty feeding/latching. They were told that she would need to use special bottles that were given to them. For the rest of the night they tried pumping and the special bottle. The next day, the pediatrician came in to send them home so they could go start adjusting to life with 3 kiddos. They expressed a concern with some noises that Haven was making and asked if that was a concern. Thats when the pediatrician said that there was something he wanted to rule out called Pierre Robin Sequence. He said he was going to make a call to Buffalo just to be safe and maybe do a video chat. Next thing you know the doctor came back in to tell them the Oshei transport team was coming to get her. She was transported to the NICU and Ryan and Aubrey hurried up there shortly behind her, Aubrey being shy of 24 hours postpartum. The following day they met with a whole slew of specialists including the craniofacial team, the Ear Nose and Throat team, the geneticist, speech pathologists, etc. After chatting with these doctors and professionals we learned that Haven has a bilateral cleft palate that affects her hard and soft palate. Because of this, she is unable to feed from breast or from a typical bottle as she cannot form suction. Ryan and Aubrey have been educated on how to feed her with a special bottle from the Speech pathologists on Haven’s team. After 4 days, they were able to go home from the NICU and follow up with the specialists over the next year or so, as they planned to repair the cleft palate at about age 1. There were expected to be many appointments until then as her first year of feeding looks different than a typical baby. Also follows ups with the ENT and craniofacial would be in the future as well.

Fast forward to November 6th and 8th, Haven had an ENT follow-up from her NICU stay on the 6th. They learned that she would need tubes at 3 months, which is typical for babies with clefts. They also had another scope (tiny camera up her nose and down her throat to look at her airway) done following some concerns Aubrey had about noises maybe related to breathing. The scope showed a little smaller of an airway than in the NICU, but wasn’t something concerning and we just need to watch it. On the 8th they had a craniofacial appointment where they discussed the same concerns and the ENT appointment. From there they recommended a sleep study test on Haven at Oshei. The following Monday they called and aid the sleep study unit had a cancellation and they could go in on Wednesday. Aubrey and Haven stayed overnight at Oshei and completed the sleep study. The same day they got home, they received a call that her sleep study results were severe and alarming, showing many obstructions of breathing overnight. That said they needed to come to the hospital as soon as they can and she will need surgery. They will be staying in the Pediatric Intensive Care Unit while we wait for surgery. The first surgery she will get very soon is called a mandibular distraction. The surgeons will break both sides of her jaw and add hardware to allow them to slowly extend her jaw forward over about a 16 day time period- which she will need to stay in the hospital for. This will open her airway and improve her breathing. 3-4 months after that they will need to go back in to remove hardware from her jaw. She will also need ear tubes around that time. Around 1 year she will need cleft palate surgery.

Aubrey has been in the hospital with Haven and has been staying out there with Ryan going out there periodically. It’s been challenging to navigate the kiddos at home and there have already been a lot of hospital stays. Currently Ryan isn’t working and Aubrey is on maternity leave from her job. If you would like to help out in any way, first and foremost pray for smooth surgeries, quick recovery, sound minds, and successful surgery outcomes. But also contributing financially towards trips to Buffalo to cover gas/fuel is something that would be very helpful for them as well. Neither of them are great at asking for help, but I know there are people who are trying to figure out ways to help!

We are so appreciative of your support!