Evelyn is two months old, has HLHS and has been in the PICU in the LUMC since birth. It’s still a weird idea that she has never been outside and she has never met anyone except us and the staff here. In our previous post we described what happened in March – which felt like a rollercoaster. To be honest, it still feels like that sometimes.
Every week we have a meet-up with one of our doctors. We catch up on how Evelyn is doing and what steps she needs to take. It works great for us. It is good to know what they are discussing between doctors and surgeons and to know in advance what they are planning to do and what they want to see.
For now it’s very clear what needs to happen: Evelyn needs to grow. She really needs to gain weight. She has lost some weight again last week and now weights less than her birthweight again. There are obviously two sides to the story: consume more calories and use less calories.
The former is what the hospital has been working on in the last week. They have been adding nutrients to mother milk to increase her calorie intake. The main problem is that adding too much has been giving Evelyn some digestive and reflux problems. Not adding enough has made her lose weight. Until she has gained weight significantly, the doctors do not want to build down on heart medicine Milrinone and breathing support (she’s on OptiFlow). That means she can’t go home yet and we don’t know if she will before her next surgery. It’s safe to say that the perfect balance has not been found yet.
The latter is a bit more tricky. Especially crying a lot (and loud, there seems to be nothing wrong with her vocal cords) costs her a lot of energy. And that energy consumption prevents her from growing. When we are in the hospital, we usually succeed in comforting her. But especially early in the morning, Evelyn tends to cry a lot. The hospital will try several things to prevent her using a lot of energy. Think of things like: drawing blood less regularly (her vitals have been stable for weeks) and only drawing when her temperature increases and thinking of some ways to increase oxygen. The doctors have stated that she might grow faster when on the breathing tube, but we don’t think that’s desirable.
So this week is all about finding the balance that can help her grow. That’s our prayer focus and for those of you praying for her: we would love for you to join us. The next surgery she needs is called the Glenn procedure. This surgery will help her heart a lot, as it doesn’t have to pump blood directly to her lungs as well as her organs anymore. Instead, her blood will go directly from her upper body to her lungs. That will relieve some of the work on her right ventricle. That should also relieve her leaky valve somewhat. But she needs to grow before she can have this procedure. Typically, kids are between 3-6 months when they do this procedure, but also they weigh around 6kg. That seems like so far away from Evelyn.
So that’s the current status. On one hand we understand that she needs to grow and we need to try some things before we can find a balance that works. On the other hand, it’s always difficult to see Evelyn struggle with measures, especially if we already think it will only upset her. Something that we have been struggling with particularly is that Evelyn has never met her family. She is the first grandchild our parents have, and it’s difficult that they have not seen her these two months except for photos and videos. Even though we have a lot of support (thank you!!) it feels sad that we can’t share Evelyn yet.
About the support we have received so far: it really does mean the world. Traveling back and forth and especially being at the PICU for two months has not been easy. It’s not the most joyful environment. It can be quite stressful with alarms going off when meds are close to being out, when they actually run out, when her heart rate is high or low, when her sats are low or high. And the same for her roommate. And the stories we hear from parents are really sad at some times. From rare syndromes and diseases to sudden heart failure. We will get more time to get used to it and more time to speak to other parents, as we will be here for a bit longer.
On the bright side, Evelyn has been a delight. Despite her situation, she has continued to develop neurologically and physically. Her hands can slowly hold things and she started to smile last week. Now, when we tell her a story, she smiles at us from time to time. She still loves looking at us deep in the eyes. She does that with the nurses too; she follows them and watches them as they work.
We feel grace to be who we are where we are. That sounds vague, but it’s so easy to get lost. We really do feel grace to keep on going, to be there for Evelyn and to keep on being kind to each other. We are thankful that we can do this together and that we have a great group of people around us.
Loey & Intan