So we move on toward what looks like a tracheostomy. This feels like a lonely road. In all the heart families we have meet along this journey we haven't met any with babies who have needed a trach. I have found one family, through the blog world, that seems to have a been on a very similar journey. They are family all the way out in California with a precious baby named Rudy. I've been asking here in the unit if there are any families that they could put me in contact with that have needed a tracheostomy. It would be really nice to be able to speak with a family that has lived through this experience as it seems entirely overwhelming. This is a huge adjustment to our "new normal."
It is late. More to come.
-A heart that holds ons