Yesterday, I took Hana to see the physical therapist. This was to check if she had some kind of over-extension problem that prevented her from getting into a good position for drinking a bottle and eating. I had my doubts, but I guess its good to rule things out. They guy was pretty amazing. He had a really nice way of working with a baby. His assessment was that she was fine and even advanced in several things. The only thing he noticed unusual was Hana’s tendency to want to stand up on the balls of her feet, which is probably from all the time she spends in the walker. Oh well, we aren’t going to be able to get rid of the walker any time soon.
After that it was a pretty normal day. Hana did vomit twice, although it wasn’t too much volume. My heart sinks every time she vomits. Today she has vomited once. It was a fairly good amount and it was while she was sitting in the stroller. I have been trying to run as many of her feeds while we are walking Poppy so that Hana is upright. We are fortunate in having a very smooth riding stroller. Before Hana vomited, I paused her feed when there was about 20 mL left and gave her the dose of Iron, so she wouldn’t get it on an empty stomach. Then I gave her the rest of the feed. About ten or fifteen minutes later she vomited. Now, I’m wondering if it is the iron. Tomorrow I’ll try giving it in between feeds and see how she does. Poor thing was covered in vomit the rest of our walk home.
Last night I was reading about Lizzie Craze. She had the first successful pediatric heart transplant thirty years ago at Stanford. She was two years old at the time. They think she may hold the record for number of years with the same transplanted heart. She runs, she got married, she has a job at Facebook. Her parents moved to Palo Alto from Ohio to be near Stanford. That’s another thing. I could say I’d like to meet Lizzie Craze but really, I’d like to meet her mom, Susan Craze. She and her husband had four kids before Lizzie was born and all but one of them died from dilated cardiomyopathy, the same diagnosis as Hana. One of the first four kids, a son, was also diagnosed with a less severe form of the disease. He lived to be fifteen before his heart started to fail him and he needed a transplant. Lizzie was born before this happened and was diagnosed at four months with dilated cardiomyopathy, she desperately needed a transplant. Therefore, Susan Craze had two kids within a year that needed a heart transplant. This was before pediatric heart transplants were really known and done. They didn’t even really know how to get organs donated, they weren’t even sure if using a donor organ was even legal.
Susan Craze was facing the possibility of losing all of her children, of being childless. She had already lost three children. People have told me that they can’t imagine going through what Paul and I are going through. Well, I can’t imagine going
through what Susan Craze went through. I would love to hear how she did it, what pulled her through, what gave her hope, especially with a procedure so unknown and seemingly risky. I would like to know how mothers facing this fate do it, how they did it. Maybe “do” is the wrong word. They “did” what they had to, but how did they find peace? Or not.
Meet Hana’s friend: