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 our last post, so much has happened. We feel mostly blessed by what the last year has been like. We have been on some family trips, our church location is going well, Intan has a new job closer to home and Evelyn is becoming a happy toddler. There isn’t much better than seeing her develop, discover new things and enjoy the process. Lately she has been singing, which is the cutest thing ever.
In July, Evvy flew for the first time for our holiday in the UK. We went for some hikes in Wales and in the Peak District and caught up with some friends. For us, this was something we had to overcome as well, because we just weren’t sure how she would react to flying. But it was a good experience, we are happy about it! Later in the year we will fly to Spain for a church conference, so we are happy that Evvy is able to come with us.
Evelyn is still in PT. She can’t crawl, still finds all the transitions between lying down, sitting and standing hard, so we are still working on that. She can walk when she is holding onto something, but finds it too scary and she is still too wobbly to walk by herself. It’s something that we are putting a lot of effort into, but also find difficult. Finding a balance in pushing her to her limits, but not beyond is hard, especially because she is such a bubbly and happy kid. She just enjoys her comfortable spots most, reading, making music and playing.
Almost two months ago, the team at LUMC let us know that they are planning a heart catheterization to try and do something about the coarctation of her aortic arch. Around this time last year, Evelyn was also admitted (we posted about it: 1 and 2). The trigger back then is that we saw she was struggling to breathe. They did a heart cath and tried to balloon her coarctation. They also found a lot of collaterals which they closed, but the balloon did not have the desired result. So this year, they are giving it another go. Evelyn will be admitted after the weekend.
For us, a lot of this year has been about reflecting on everything that happened last year as well. As she turned one in January, there were so many moments our phones reminded us of what last year was like. It was the right time to talk about it, get some therapy, and also discuss how our experiences have shaped us. So now, being admitted around the same time as last year, obviously memories come back up. We wouldn’t even be surprised if we got back into one of our old rooms.
Anyway, we have learnt a lot during the last year. It takes some effort to find the right boundaries for your family, for your child and also for ourselves. Listening to our own bodies and paying close attention to Evvy’s body remains super important. But during the year, taking the time to really enjoy each other’s company has also been paramount. I don’t think any of us need to make any effort to worry; that comes automatically. Rather, for us, we need to try to lay down our worries, address them at the proper time, and be thankful for all we have. Because as every heart parent knows, it is not something we can take for granted.
Loey & Intan
Thanks for reading this post! Since Evvy’s birth and throughout her surgeries and admissions, we noticed how connected the heart community is and how often parents or new parents have asked us questions via social media. We have had to learn so much about HLHS and every heart family has their own journey. So we decided to start this website and keep whoever is interested up-to-date and to help out new heart parents where we can. Follow us on Instagram if you are interested in more regular snaps into our life and Evvy’s heart journey. If you have any questions, always feel free to send us a message!