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 taken for granted, that is for sure.
Loey is still injured and recovering from his ruptured Achilles, but this week he got rid of the cast. Intan really cannot wait until he becomes a little bit more mobile and can help around in the house again. We cannot imagine what it would be like to go through this alone and salute all the single parents; especially the single heart parents.
But obviously, most of you are here to read about Evelyn. In our last post, we described how moving Evelyn back to Pepti MCT helped in her drinking more by herself. We decided to measure a lot more carefully how much she drinks by herself every day, how much she eats and for what volume we use her ng tube. We remembered a milestone mentioned months ago by her dietician, that 500 mL would be a goal to work towards. So we did.
November 1st marked the first time she drank a whole 150 mL bottle by herself. Not in one go, but we celebrated the win for sure. Note; it took another five days for it to happen again, but we are used to progress not being linear by now.
Our first ambulance ride
Unfortunately, that is not the craziest thing that happened in the last weeks. Evelyn gets a monthly vaccine to protect her from RS virus. A pharmacy delivers the vaccine to our house, we have the needles and a nurse comes to our house. She weights Evvy to determine the correct dosage and then administers it. Then she waits a short while to see if there are any side effects before she leaves.
This time, we had a new nurse – but not inexperienced. She has almost 30 years of experience. Still, something went wrong; for some reason, she administered adrenaline instead of the vaccine. If you were writing a script, you really wouldn’t come up with this. We didn’t know straight away, but we were called that something went wrong and we had to call 112 (Dutch 911). Evelyn was connected to a heart monitor and we drove off in an ambulance to a hospital nearby.
After being monitored for a while, we were sent home without any complications. Thank God. To be honest, during the whole process, it seemed like it had no effect on Evvy. But it sure did spook us. We looked at each other in the hospital – three different ERs in a month – in slight disbelief and couldn’t help but laugh a bit as well. This journey is crazy. We are happy and relieved it ended well.
Whilst the ambulance was waiting, her ng tube was being replaced. We have had a love-hate relationship with it. Some days, we have loved it because it ensured Evelyn could get enough food in her system. Other days, we have hated it because it makes days and nights more complicated and cumbersome. And obviously, if at all possible, we would like her to go without.
In the days after our ambulance adventure, we noticed Evelyn started finishing (or close) her bottle more regularly. We noticed that for a number of days, she drank more than 500 mL and additionally ate some solids and mashed fruits and veggies. So after consulting our cardiologist and our dietician, we took out the tube for a ten day trial! We are halfway now and Evelyn is doing great. She is drinking and eating enough! So we hope the tube can stay out.
The two main things we would love to get your prayer on are 1) her weight and 2) her health. She hasn’t gained weight in a while. She is still 6.5kgs so we hope she will start to gain soon. And also, she has been a bit snotty and coughing a lot in the last couple of days. We hope she recovers soon. Also, pray for us; it’s a crazy time to be having a heart child, being injured and pastoring a church location with COVID restrictions and everything. Thanks so much for reading, being a part of our journey and for praying for us. We have seen covering in the last year for certain and feel really blessed.
Thanks for reading this post! Since the start of 2021, 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 HLHS heart journey. If you have any questions, always feel free to send us a message!