Nolan was prenatally diagnosed with a congenital heart defect at our 20 week sonogram after the loss of his twin. After birth they confirmed he has a complete unbalanced AV canal, hypoplastic left ventricle, Coarctation of the aorta, and trisomy 21. On 12/7/2021 he received his first open heart surgery for aorta repair and PA banding. On 08/8/24 he received his 6th open heart surgery to place a pacemaker. Today, 9/30/24 Nolan had an echo that showed severely depressed heart function, meaning he’s in heart failure again. His pacemaker is also under increased strain, and we've lost several more years of life on it. The coming days will involve some very difficult conversations, as we've been referred to the heart failure and transplant team to explore our options. One thing is for sure though… many more hospital stays. Chelsea or Daniel stays by Nolan’s side the entire time. There is always one person there. They do not leave, not even to eat dinner. They get all their meals delivered from DoorDash or other food delivery services. I am trying to make it easier on them and take one less stress off their backs. I’m aware their church has started a meal chain for their babies at home, but we need to take care of the parent who sits in the same four walls day in and day out.