Nora Mae

On February 11, 2020, our family was blessed with a beautiful baby girl. Kevin and Kaylee’s daughter, Nora Mae, was born at 11:57 am weighing 7lbs 7oz and absolutely beautiful! After a mere 5 minutes of holding her first born, Kaylee had to hand over her daughter to the medical team so they could assess some breathing concerns. After a very quick assessment, the team realized she was in need of intensive care and Nora was transferred to the NICU at Providence via ambulance. Her Daddy followed, and when Mommy was released 6 hours later, she drove to Anchorage to be with her baby. The medical team at Providence very quickly realized that what they thought was heart and lung issues, was much more severe and was potentially being caused by her brain. They did not have the equipment, nor the specialists needed to handle her care. Nora and Kaylee were immediately flown to Seattle Children’s Hospital via LifeMed. Kevin bought a ticket to Seattle and met them there shortly after they arrived. After Nora was admitted to Seattle Children’s, the team felt it best to monitor her and wait as long as possible, because she was only 3 days old. When her heart began to fail and her lungs were not operating properly, they realized they had no more time to wait. She was put under anesthesia so they could do a brain MRI. The MRI revealed Nora has a rare condition called Vein of Galen Malformation. The condition in the brain causes the heart and lungs to malfunction which, if left untreated, results in heart failure. Luckily, the surgeon who developed the procedure to treat this condition was present in Seattle and was able to be the operating physician. Our 4-day old baby girl underwent her first successful brain surgery. They were able to place coils in 5 of the 20-30 veins that are affected by this malformation. After the procedure, the medical team found a clot in her brain that could potentially be harmful and they may need to go in and remove it. At this point, the next step depends on the last. In about 15 days, Nora will have her second procedure to treat her condition. In the meantime, she will be sedated to keep her still and allow her little body to adjust to all that is taking place. There is a long road ahead of Nora Mae and her family; emotionally, physically and financially. There are still so many unknowns. As of now, Kaylee and Kevin are on the waitlist for the Ronald McDonald House as they are currently sleeping in a small room of the hospital, and there is no telling how long those accommodations will be available. As first time parents, this is not what anyone expects or plans for. They are in need of our prayers and support as they navigate their way through this challenging time. Any financial support we can offer them is greatly appreciated and all prayers are welcomed. Thank you.