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”
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”
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”
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”
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”
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”
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”
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”
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”
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”
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