Step down, round-trip ICU and progress

In our last update, we wrote about our upcoming move to medium care; and since we have moved to step down! It’s been a crazy week. A lot has happened and we have definitely moved into new territory, especially compared to our experience with interstage, the time between the first and second surgery.

For those of you visiting this website for the first time: welcome and thanks for reading! Our little girl has a condition called Hypoplastic Left Heart Syndrome (HLHS), is a week shy of four months old and has already had four surgeries, of which two are the main surgeries required for HLHS patients. For those of you who have been with us for longer; yes, you read that correctly. Evelyn has had a fourth surgery last week and we will get to that in a bit!

The step down move to medium care was really smooth in the first couple of days. Our room is a lot more home-like than our room in the ICU. Evelyn really had to get used to the move. We have windows that face outside, so there’s natural light coming in. She wasn’t used to that at all! And her bed in the ICU was all she had ever known, so we had to comfort her a lot as she got used to her new room. We rode her stroller on the ward and started her feeds in portions; it was all continuous until now. Those might not sound like big steps, but to us they are huge. Feeding in portions starts feeling more normal.

And with feeding in portions, we have started to give her the bottle. This also felt huge for us! The fact that she can drink from the bottle after almost four months, has been baffling the staff here. Of course she doesn’t drink her whole bottle, but we give her whatever she can handle and then finish the rest via her ng tube. Also, she has gained quite a lot of weight in the week that she’s been here. The first couple of days were progress for sure!

There was one obstacle though: her sternum. The wound started to look infected last week already and it was being treated. However, it started to become a bigger problem. We could see that every time she has hiccups or had to sneeze, it would really hurt her. We put her in the stroller and walked to Radiology, where photos were taken. The steel wiring holding her sternum together wasn’t working properly anymore and her sternum wasn’t holding together well anymore; that definitely hurt her.

So an emergency surgery was planned the next day to open up her wound again and repair the steel wiring. It was planned at 8AM, but unfortunately, she could only go into the OR around 4PM. Little girl was starving! But we are thankful that the surgery went well. She had to stay in the ICU for a night for observation. But the next morning, she could move back to medium care.

So that’s where we are now. Getting a more strict rhythm for ourselves, so we get more used to her feeding and medication schedule. We take turns in staying with her overnight, as only one of us can stay here. That’s hard, but it’s temporary. We get to know her even better and get to really take care of her at night too. The next steps are staying stable, growing steadily, finishing antibiotics and staying healthy! We will learn more about her meds and her tube so we can do that care at home as well; we’ll have to do it without the support of the nurses.

So keep on praying for us! We are really feeling the longevity of our hospital journey and long to be together as a family at home; so pray we can see that happen in the next weeks. Pray for Evvy to stay healthy and to keep on making steps. We are so thankful for the army of prayer warriors our little heart warrior has. We love each and every one of you and can’t wait to see you again!