It's been a memorable and challenging three weeks, but we are so happy to be finally getting settled in at home.
Abby's done great at home so far. She seems pretty relaxed and is adjusting well to her new environment. She has tolerated the dogs, put up with some parental difficulties with the feeding pump, and really been a great baby through everything. We're enjoying working with her on tummy time and attempting bottle-feeding during her 2 three-hour breaks from the feeding pump. She has some nice alert periods during the day - we love watching her big blue eyes taking in the world around her.
While it's wonderful to have our whole family at home together, caring for Abby is quite a learning process. I think our release from the hospital has confused some people, so I want to clarify Abby's health status: nothing has really changed. She still has hypertrophic cardiomyopathy and has to take medication three times a day to relax her heart enough to keep fluid from backing up into her lungs. Things that might be no cause for concern in other babies (i.e. sounding congested or spitting up a lot), for Abby could mean a serious problem. We were also warned to keep Abby away from people/places she could contract even a cold from as it could land us back in the CICU. She still has three holes in her heart, some of which will need to be addressed surgically once she's big enough to tolerate such procedures. We will be traveling down to Cincinatti Children's on a weekly basis to reassess her status with the entire heart failure team (which includes cardiologists, dieticians, pharmacists, OT, PT, and speech). We will also start discussing skull surgery when we follow-up with neurosurgery toward the end of September. In addition, she is hooked up to the feeding tube for 18 hours a day, which makes us largely immobile until we figure things out a little better. Being home does not mean everything's been fixed, it simply means that they can't currently do anything for her at the hospital that can't be done at home.
Because of all of this, the idea of visitors is a little overwhelming right now - please be patient with us.
We're focusing on taking things one day at a time, trying to enjoy the little things, and being thankful for our baby girl.