Going back and going forward

It’s been a long time since we wrote anything. To be honest, for a while we have been wanting to write something. But the longer we waited, the more difficult it becomes to decide what we wanted to write, causing some sort of a spiral. But now we finally got something in writing. Since ourContinue reading “Going back and going forward”

You wouldn’t come up with this

Hi all! It has not been that long since we last wrote an update but we really wanted to share some good news. I think it is part of this journey that because there are so many difficult and stressful moments, we experience the milestones and highlights more intense as well. No milestone is takenContinue reading “You wouldn’t come up with this”

A Wild Couple of Weeks

Hi all! It has been a couple of weeks since we wrote an update and a lot has happened. Honestly, 2021 seems like the year that keeps on giving and not in the best way. More on that in this post. In the midst of it all we feel covered by grace and there isContinue reading “A Wild Couple of Weeks”

Progress in baby steps

Our heart warrior Evelyn is turning four months! That means we have been in the hospital for four months, of which three weeks in medium care. Evelyn has already had the Norwood and the Glenn procedures – the last one a lot earlier than other HLHS babies. The Glenn has made so much difference. SheContinue reading “Progress in baby steps”

Step down, round-trip ICU and progress

In our last update, we wrote about our upcoming move to medium care; and since we have moved to step down! It’s been a crazy week. A lot has happened and we have definitely moved into new territory, especially compared to our experience with interstage, the time between the first and second surgery. For thoseContinue reading “Step down, round-trip ICU and progress”