Our sweet boy Maverick was born on 12/24/24. Upon birth, he had a cord avulsion. Following that, they noticed decreased movement and alertness. A few hours later, he was taken to Hurley NICU. Lots of tests were ran at Hurley but still no diagnosis. We were then transferred to Detroit Children’s Hospital. We spent 48 days in the NICU there. During that time, we were able to find a diagnosis for Maverick which is a rare muscular disease called Nemaline Myopathy. From our consults with genetics, it appears Maverick has a mild form. His main concerns have been muscle weakness, specifically in his upper body as well as respiratory difficulties related to his apnea. He also had a g-tube (feeding tube) placed because he’s unable to safely consume all milk through bottle feedings. So we are looking at a long road of lots of therapy for him. All of this came as a huge shock since I had no major concerns during my pregnancy with him.

We were able to be discharged on 2/10/25 from Detroit NICU. At that time, we were on .25 liter oxygen (which he’d been on for weeks at the hospital with no desaturations) with a 2 week wait for our high flow (airvo) to be delivered at home to be used while he is sleeping. Our oldest son, Logan was able to meet his brother for the very first time! We were enjoying our time finally together as a family. 6 days later, Maverick’s heart rate was reaching the 200’s and we had to bump him up to 3 liters of oxygen on the way to Hurley ER. From there, we asked for a transfer to Mott Children’s because we heard good things about the pulmonology team there. We’ve been admitted to the NICU at Mott Children’s. A bronchoscopy was completed showing lung weakness and X-rays showing lung collapse within the right lung. As well as a swab completed showing he has rhinovirus (sort of like a cold). We knew any sicknesses he caught would be a set back. But we didn’t realize it would take us this far. He’s been on cpap at high levels in order to help his lungs expand and frequent breathing treatments from respiratory since. Right lung has since improved. But now it’s a waiting process to figure out if we can wean him off ventilation support enough to return home safely with our equipment. Or if we will be looking at a tracheotomy. This could take several weeks for a decision to be made.

We are trying to keep Logan’s life as normal as possible. Since Detroit, Joey and I have been rotating who stays at the hospital everyday. Then the other parent is at home with Logan until we rotate again. And now we’re doing the same with our stay at Mott Children’s NICU. We’re an hour away from the hospital. Traveling everyday to/from. Joey’s work has thankfully been flexible with him. But eventually, he will need to return in office 1-2 days a week. He’s working from the hospital or while trying to care for Logan when working from home which both have been challenging. We’ve been so lucky and thankful to have family support to help with Logan when they can. But if we’re looking at a few months worth of splitting our time at the hospital, we may need to hire some more help for watching Logan during Joey’s work hours.

I never thought we would make a gofundme, but we have had some friends and family ask us to make one so they can donate. If you are able to donate, anything helps! If you are not able to donate, please pray for our family. I cannot wait for the day we’re all home together again.

Thank you to everyone for all the thoughts, prayers and support for our family.