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”
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”
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”
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