We are back in the hospital. If you have been following us on Instagram, you probably have noticed that Evelyn was admitted last Monday. The last month, Evelyn has been doing so well. She has been developing and very important to us, she has been so happy around the house. Smiling, talking, taking solids andContinue reading “Back in the hospital”
Tag Archives: HLHS
Parenting: all the joy, all the patience and all the milestones
It has been almost two months since our last update. We have not written anything in the meantime, as we have been trying to pick up life again. Intan’s still on leave and will start working again in the next weeks and Loey has been working the last two months already. It also feels naturalContinue reading “Parenting: all the joy, all the patience and all the milestones”
HOME
Dear friends, You might have seen it online. We are home! We have been for almost two weeks now. This is what we have been looking forward to for months and months. And roughly three weeks ago the medical team told us she might be able to go home in a week. After a weekContinue reading “HOME”
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”
Post-Glenn update
It has now been one week since Evelyn had the Glenn, the second of the three main surgeries for HLHS children. Intan was able to bring her to the OR and stay with her until she was fully sedated. On the way to the OR, Evelyn was looking around because she has not left theContinue reading “Post-Glenn update”
Next mission: GROW
Evelyn is two months old, has HLHS and has been in the PICU in the LUMC since birth. It’s still a weird idea that she has never been outside and she has never met anyone except us and the staff here. In our previous post we described what happened in March – which felt likeContinue reading “Next mission: GROW”
