Clearing big hurdles and learning about life in the pediatric intensive care unit
A lot happened in Autumn’s first week with us: She underwent her repair surgery and came off life support. This week she is getting acclimated to her new bodily constitution and doctors are trying to optimize the settings on her breathing machine and pinpoint the right cocktail of medicines for her pulmonary hypertension.
The trajectory as we understand it today: Wean off the breathing machine, start feeding (a lot more complex for babies with CDH), and then … one day … go home.
Autumn has a long road ahead before she can come home with us, but she is showing lots of early progress. We’re meeting today with the team to talk about strategies for thinking about her care and how we, as her parents, can participate in what is likely to be a drawn out and complex treatment plan. We are likely looking at marking progress in months rather than weeks.
Adrienne and I are doing what we can to prepare mentally and physically for the road ahead: Showing up early, getting rest at night, trying to eat at normal times. We’re in it all the way with Autumn. Most of her progress is going to be incremental now. But bit by bit we will get her where she needs to be.
We are staying at Ronald McDonald House in Baltimore for the near term and then will make a decision about going back to our house in the D.C. suburbs once we get a little further down the road.
Taking it day by day.
