baby boy will need open heart surgery ๐Ÿ’”

Rachel ๐ŸŒบ ๐Ÿ’™๐Ÿ’— โ€ข Mama to 4 year old twins ๐Ÿ’™ ๐Ÿ’–
Had our scan at children's and baby boy has complex congenital heart disease and will require open heart surgery right after birth. We are both devastated/terrified for him, and also relieved to finally have some information and a "plan" in place. If things progress as they are the next 17 weeks, his odds are really good and can live a totally normal life (with constant monitoring by cardiologist and another surgery before kindergarten).ย 
Question is: has anyone dealt with a healing child after birth? Just curious how your schedules were different, co-sleeping arrangements, etc. I know we'll be listening to him for the most part, and make it up as we go along, but any advice is appreciated. Baby girl looks great so fingers crossed I carry them to 37+ and she needs no NICU time so we can be with him. I know he's a little fighter!!!