Some steps forward, one leap back

This weekend marks 10 weeks in the hospital for us. Evelyn was born on the 31st of January with a severe heart defect called Hypoplastic Left Heart Syndrome. In addition to that, she has something called tricuspid valve regurgitation, a leaky valve on the right side of her heart. It’s not necessarily common for HLHS kids to stay in ICU during interstage (time between the Norwood and the Glenn), but the combination of HLHS and a leaky valve and the infections she has had to face, means she still really needs the Milrinone and the support the PICU can offer.

Last weekend was Easter weekend, and it might have been the best time we have had so far. Evelyn was lively and developing. She was playing with her toys. Because her hands were temporarily free from IV’s, she could use them to discover our faces and some of her favourite toys. She was put on a new diet and it had some effect; she grew a little bit.

How everything changed on Tuesday. During the night, she already had to spit a little, but one expected Tuesday morning. Evelyn was hit with a fever of 39.5C and her heart rate had gone up a lot. She was crying too. When we arrived, mom took her in her arms to comfort her. Her heart rate shot up to the 200-210 area and we heard her cry like we had never heard her cry before. She went from blue to pale white and the doctors decided to take action and intubate her again, and to give her some additional support medically. We are so glad they took action on time – it might have prevented the need for reanimation. Evelyn was in really bad shape.

It turned out the she was infected by two bacteria that came from her intestines. The infection hit her really hard. She is a lot more stable now, but the fact that she is intubated again and that her medication is back to where it was over a month ago, means we have had to take a number of steps back. They say that this heart journey means a couple of steps forward, and then a couple of steps back before you can move forward again. This week has felt like a leap back.

Now it is weekend and Evelyn is still recovering a bit, although she is a lot more stable and is doing a lot better. In this weird week, she has even gained a little bit of weight. Which is unexpected, but good news. Because she is intubated, she is sleeping a lot more and when she is awake, she is a bit half-awake. At this time, she is not her aware self and doesn’t follow us with whatever we do. It’s a bit harder for us, but obviously we want the best for her. We hope she continues to grow and can get off the tube soon. We will hear more about next steps on Monday.

Thanks everyone for your continued support! We got a lot of sweet messages, encouragement and prayer after our last post. Some friends got some food delivered to our house. It means the world to us. Thank you so much!