It has been almost two months since our last update. We have not written anything in the meantime, as we have been trying to pick up life again. Intan’s still on leave and will start working again in the next weeks and Loey has been working the last two months already. It also feels natural for us to write updates less often, as we don’t have medical news all the time. We are thankful for the current stage: it will be a long time before her Fontan will need to be done and there is not a lot of medical news. It’s all about her development now, which probably feels much like what most parents go through, except for all the things heart parents worry about. We’ll share some of those in this post, but we’ll also share some things we are so thankful for!
About tube feeding
We have a love-hate relationship with her ng tube. And we can imagine that other parents can relate! On one hand, we want Evvy to drink from the bottle as much as possible. We wish she wouldn’t need her tube. It’s frustrating when she pulls out her tube. Here in the Netherlands, we can call a nurse that comes to our home to replace it. But we have had weeks where we needed to replace it four times in a week. It can really mess with the schedule, plus Evvy obviously hates the tube being inserted. Plus operationally it really can be a hassle. On the other hand, some days she just doesn’t drink that well. Without the tube, that would be a problem. Her tube does mean she gets enough milk, whether she drinks well or not.
“How much longer will she need her tube?” is probably one of the most frequently asked questions we get. The truth is that we don’t know. Practically, we give her the bottle first. Whatever she doesn’t drink from that bottle, we finish via her tube. We also use her tube to give her medication. She is still on diuretics (furosemide and spironolactone) and on ascal (aspirin). We have learned not to project a time path too much for now.
“How much longer will she need her tube?”Probably one of the most frequently asked questions
About looking back and moving forward
In the last two months, we have been balancing between looking back and moving forward. Looking back is sometimes unpleasant, but also makes us conscious of how far we have come. It reminds us how strong our baby is. But it also reminds us how much we have missed. Looking back makes us thankful most of the time, but also sad sometimes.
Most parents come home with a newborn. We came home with a 4.5 month old. That means a big number of firsts were skipped. For example: Evelyn has never slept in her bassinet, because by the time she came home, she was used to sleeping in her own bed. So the bassinet has remained unused. Intan has not been able to breastfeed, as Evelyn wasn’t able to be breastfed in the hospital. Intan pumped for months, but after months of pumping, two full freezers and declining production after COVID, stopping was the best (and possibly only) option. Evelyn is now slowly emptying the freezers. But there are many things we see other parents do with their newborns that we didn’t get to experience with Evvy and being home and picking up life again we become more aware of that. In some ways, we have to grieve the phases and moments we have had to miss.
But looking back also has made us determined to celebrate every milestone. We celebrated her 1/2 birthday somewhat over-the-top, we absolutely shouted for joy when she first was able to do tummy time without crying, when she lifted her head for the first time and are so excited about her first bites of food. Her first audible baby laughs pretty much got us crying and laughing at the same time. She is a happy baby who loves to baby talk all the time. And we are here for it.
We need to move forward, but looking forward into the future is still a fragile thing for us. HLHS a so tricky and many days we hear and read about HLHS kids who do not make it. It remains a thing that we need to have faith for and so moving forward, we have to move forward in faith.
“Looking back makes us thankful most of the time, but also sad sometimes”
About her physical development
As you would imagine, laying in a hospital bed for four months isn’t the best for you physically. It isn’t for a baby either. Evelyn had mainly laid on her back for four months. She was also laid on her side a couple of times a day to prevent bedsores. But obviously it wasn’t beneficial to her physical development. That made sense. Her first months were about survival, not about making sure we are on track with the whattoexpect.com steps.
But after her Glenn, we were able to pay more attention to her physical development. Already in the hospital, a physical therapist and a speech therapist came by to help regularly. And now we are home, we have a great physical therapist who visits us every other week and a great speech therapist who visits us. Her PT helps us point out what we need to pay attention to in her posture and what exercises we can do. Her ST gives us tips and tricks to help us improve her drinking, swallowing and eating skills. We are thankful that our health care system works this way here.
In the hospital, we were faced by monitors that displayed heart rates, pulse ox, blood saturation all the time. The nurses taught us to not look at the numbers, but to look at our daughter. And that’s exactly what we need to do now. Because not every day is the same. We need to look at her, what she looks like and what she is trying to communicate. We are learning to not be completely stressed out every time she turns a bit blue (cyanosis). As any other parent, we have to learn what is normal for our child and what isn’t. But it’s also a bit different. For obvious reasons.
Thanks for reading this post! Over the last six 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!