2021 has been wild so far. So wild. We always felt a bit skeptical at everyone saying how 2021 was going to be so much better than 2020, knowing what was coming at us. For those of you who don’t know, in September last year, when Intan was 20 weeks pregnant, we heard how our baby has HLHS. We wrote about how we dealt with it back then. Now, after our daughter has spent her first month alive in the intensive care at LUMC, we wanted to write an update. This is more of a personal update, containing less reflection and lessons learned.
Fast forward, the first two months of 2021 have passed, we moved house, Evelyn Thea Rose Wittink was born and already survived two open heart surgeries and a number of setbacks. And countless beautiful moments too. Holding her for the first time, hearing her for the first time, changing a diaper for the first time (to clarify, Loey – Intan has changed countless diapers). And seeing how strong both Intan and Evelyn are, recovering from some major physical challenges has really encouraged me. We have already met so many heart parents, both in person as well as online. My appreciation for you has grown so much in the last month.
Both Intan and I have gotten so many questions about how we are doing that we decided that we wanted to write more frequent updates. This will probably be the last update I wrote on this website before I start writing my usual content again; our future updates will be published on our new website. We found reading about parent’s experiences – and also children’s experiences with heart disease so helpful in understanding what was coming our way, that we want to return the favour for future parents. Already in the last weeks, we have had contact with a number of parents, here in the Netherlands via HLHS Facebook groups and our personal Instagram accounts, and have been able to help by sharing our experiences. We also opened a separate Instagram account and even a TikTok account. Yes, we are one of those Millennial couples on TikTok who are terribly late to the game, but we have actually found TikTok a lot of fun.
Anyway, January 31st already feels like such a long time ago. It was Evelyn’s due date and Intan’s contractions began just briefly after midnight. Intan’s delivery was pretty rough: from 2.5 hours of non-stop contractions (literally) at some point, to some contractions not fading after an epidural and finally, an emergency c-section. But I feel all of that is more Intan’s story to tell than mine. At 23:13 Evelyn was born in the OR and obviously for us it was love at first sight. After Intan was recovered enough to hold her, we were able to spend some time as a family in the PICU, as Evelyn has completely skipped the NICU. Those moments were precious. We remember them vividly, as it was the last time we held her so far. It’s one of the photos in the slideshow below.
Intan would have to recover and be admitted from January 31st until February 4th. Usually they admit women who have had such a c-section a day shorter, but the hospital (LUMC) extended her stay by one day due to Evelyn being admitted as well. I went from the birth centre to the PICU and back, to spend time with both of my girls. Evelyn apparently decreased quite quickly: her heart was pumping too much oxygen-rich blood to her lungs and not enough to her body, even though you really couldn’t see that by looking at her. They tried to improve it by putting her on CPAP, a mask that would help her breathe a higher degree of oxygen, but it didn’t help enough. That meant she needed surgical intervention on her first day alive.
Her surgeon put shunts on her pulmonary arteries and gave her a balloon treatment to improve the blood flow between her ventricles. The surgery was a success, and Evelyn could recover for now. It also meant that this intervention did buy her some time until the Norwood operation, which wasn’t planned back then, but she would get a week later, on February 8th. In between, after Intan was discharged, we went to stay at the Ronald McDonald home in Leiden. It’s amazing that these facilities exist. We didn’t stay long as we really longed for home, but we appreciate the facility so much. They also have a special floor in the hospital where children can play and parents can meet each other; we go there regularly.
Between the first operation and the Norwood, Evelyn did quite good. She improved enough to be ready for the Norwood and the Norwood operation went well. The Norwood is the first of three large open heart surgeries that Evelyn will need. I find this description of the surgery relatively easy to understand. After the Norwood, initially she recovered well, but we have had some setbacks in the last two weeks. Getting her off of her breathing tube didn’t work, so she has been on that basically the whole month, barring the day that we tried getting her off it. She also suffered from two infections, caused by a bacteria in her central line and her arterial line, which is a risk that materialises more often sadly. She is on antibiotics and that has really helped her.
A couple of days ago she seemed ready to extubate again, but during some last tests she had some fatty milky fluid near her lungs. Apparently it’s called chylus. It means that she couldn’t process some of the fats in mother milk. It doesn’t appear to be something that will bother her long term, she just needs a special diet for the next six weeks. Today we thought they might extubate, but she has been throwing up a lot, which is a bad combination for extubating a baby. That means doctors need to have a look at her diet again; it is yet a question to us what needs adjusting.
This month has not been like anything we have faced so far. We have found a new rhythm and know that this is a season that looks different from before. We have to take life day by day and just see whatever she needs. Some days are good and we can enjoy spending time with her; we take and cherish those moments. Other days are a bit harder because Evelyn might be struggling and both the doctors and us might not know why; we also have to take those. Every day we are thankful for the incredible staff here, for our friends and family who are thinking of us and supporting us however they can, for our colleagues for allowing us to take time as a family and for Jesus for being with us every step of the way.
Believing for the best, knowing Evelyn has a beautiful future and knowing who holds it. Thankful for the now. Thanks for everyone who has reached out, prayed for us, made us meals or ordered us food or gave us Takeaway online coupons. For those who helped us move and for those who sent flowers and cake. If this time has shown us anything, it’s the value of community and not doing life alone.