Back in the hospital

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”

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”

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”

About the Glenn, COVID and meeting family for the first time

We wrote a new post a bit over two weeks ago and it was sitting in the drafts. We were only supposed to add some photos and it was ready to go. However, we never posted. Evelyn was doing alright, but we got COVID. Which meant that we have had to isolate for almost twoContinue reading “About the Glenn, COVID and meeting family for the first time”

Some steps forward, one leap back

This weekend marks 10 weeks in the hospital for us. Evelyn was born on the 31st of January with a severe heart defect called Hypoplastic Left Heart Syndrome. In addition to that, she has something called tricuspid valve regurgitation, a leaky valve on the right side of her heart. It’s not necessarily common for HLHSContinue reading “Some steps forward, one leap back”

Our journey: two months of HLHS

Welcome to our first post on our website. We posted updates during Intan’s pregnancy and one month after Evelyn’s birth on Loey’s website. Our lives have changed quite a bit since knowing about our daughter having Hypoplastic Left Heart Syndrome. We are now almost two months in and Evelyn is still on the Intensive Care.Continue reading “Our journey: two months of HLHS”