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 and playing. Her whole team was happy about how she was doing. We were happy about it too, because we saw a happy and rapidly developing kid. My goodness, it goes so fast. Every day we hear new sounds or see her do something she didn’t do before. If you blink or get distracted, you miss it. It’s such a joy to see.

Last weekend though, we noticed she didn’t feel that great. She was less smiley, less talkative and started spitting more. And there was a lot of mucus in her spitting up. We thought it was mostly due to teething and that it would be over soon. However, on Monday we added shortness of breath to the list. And when Intan came home from work, Evvy didn’t even smile. Maybe she couldn’t. But she was looking less like herself so we called to consult one of her doctors and took her to the ER.

When we arrived at the ER, we were told only one of us could come to the examination and the other parent had to wait in the waiting room: COVID-19 rules. Intan went with her. Loey waited. Evvy was tested for the most common viral infections, bloodwork was done, an ultrasound was done and a photo of her thorax was taken. She was admitted due to her heavy breathing and more exams would be done.

Around midnight we were finally settled. Loey went back home to get some more of our stuff so we can stay here for longer. We are taking turns: every night one of us sleeps with Evelyn and the other stays in the Ronald McDonald home here in Leiden, just a short walk away.

The next morning it was clear that Evelyn would need surgery. Maybe even the same day, so she was kept sober. Turns out that she would need a heart catherization to get a good view of her heart, to check for collaterals that might need to be closed and to repair her aortic arch. Tuesday turned out to be a waiting game and our patience was tested. Evelyn was very hungry but couldn’t eat, all to find out at the end of the day that it wouldn’t happen that day. So we could finally feed her and hope that there would be space the next day.

So Wednesday pretty much started the same as Tuesday. Biggest difference was that they started Dobutamine to help her heart and it made a big difference. That, in combination with the OptiFlow to aid her breathing, really helped Evelyn a lot. She had energy to play, could breathe more easily and was alert. But still it felt like relief when Wednesday afternoon we heard she needed to get ready for the procedure.

The procedure took longer than we expected, even though we knew it always takes a while with these little kids. It might have been around 4-5 hours in total. We heard the procedure went well and she would wake up soon. That however, went a lot less smoothly than planned.

It happens that kids have trouble snapping out of general anesthesia. Evvy had a lot of trouble properly waking up from it. So she would be drowsy one second and screaming out loud the next. Her heart rate also varied from normal to very much elevated. It was last most of the night until some sedatives really kicked in.

It is now Thursday night and today has been a lot better. She seems to be getting back to her old self, little by little. Her left leg is still a bit colder than her right leg, caused by less than ideal blood flow in her arteries. This is being treated by jabs on a daily basis.

As of now, we have no idea how long we need to stay, though we long to go home. Being in the hospital has triggered some of our less favorite memories. It has been an exhausting couple of days to be honest. Also, we found it scary not knowing what was wrong with her and even though we have heard many stories about heart caths going smoothly, leaving your kid for an OR is never an easy feeling. We felt covered in prayer and are really believing for a good recovery. Now we just hope we can go home soon.

Thanks for reading, thanks for praying and sending sweet sweet messages. Much love from us.

Intan, Loey and Evelyn

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Thanks for reading this post! Over the last eight months, we noticed how connected the heart community is and how often parents or new parents have asked us questions via social media. 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 or TikTok 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!