Vivian Eve

When I had my 20 week ultrasound with Vivian, we were given the news that her heart only had two chambers (HLHS). It was devastating news at the time. We went ahead and had an amnio, which showed that she also has Turner Syndrome. Turner Syndrome is primarily associated with short stature and infertility, but also heart defects. I'm glad we found these things out early in the pregnancy, because we had time to research and find out more about them as well as to choose the hospital and course of action we wanted.

We opted to have Vivian's first surgery, the Norwood, at Texas Children's Hospital in Houston, TX. Vivian had this when she was five days old. I think I got to hold her for maybe ten seconds in that whole five days, and that just briefly before such a big surgery. We ended up being in the hospital for about 3 months for that stay, due to many things, including an episode of respiratory distress, and feeding issues. She had a gastronomy tube placed at about 3 months old (her second surgery) and we got to take her home.

That time between the first two surgeries was so difficult. She was very sweaty all the time and just seemed so fragile. We fed her with a pump and took her to many doctor appointments. Her second surgery (the Glenn) was at 6 months old and made a huge difference for all of us. We were in the hospital for only a few weeks, but ended up returning for pulmonary effusions (fluid around her lungs) that had to be drained.

Now Vivian is 20 months old. We removed her g-tube at around 15 months old. She primarily still only takes bottles and a few select foods. I think eating will be an issue for a while. She is still mostly crawling, though she does pull up to "cruise". Since the Glenn, she has been so much stronger and happier. Because of her Turner Syndrome, she is very small—only 18 lbs at 20 months old, but she is feisty.

I just wanted to post this to say we do not regret anything we have gone through with her. The first year was so hard, but she is very worth every minute of it.