This is just a quick update on our U of M visit yesterday. We will get you more details later. It went really well. As promised, the new hospital is really nice and huge. We didn’t get lost on the way to any appointment, which is a good start.
The day had its ups and downs. We started out with a genetic counseling and another level two ultrasound. We were reminded that without doing an amnio we cannot rule out genetic defects. There are not any specific defects that are suspected and everything “is within normal ranges” but there could still be problems since having a heart defect increases changes of genetic defects. As we all know, there are no guarantees. This was a down part of the day.
We met with a social worker to discuss the more practical side of our hospital stays and all things “non-medical” as she put it. Our meeting lasted much longer than I expected and was very helpful. We got a lot of really good information and will continue to work with her going forward.
Next up was our echo, which is ultrasound of just the heart. There was a student observing, which actually gave us a lot of information because they were talking about what we were looking at in a lot of detail for the student’s benefit. We then met with one of the pediatric cardiologists to discuss the outcome. Of course, it was officially confirmed that she has HLHS. She does have a left side of the heart but it is just underdeveloped.
During both the ultrasound and the echo our little girl was so active. We think she is a bit camera shy because she is always moving out of position for whatever we need to look at. She has had some many ultrasounds already and really does not seem to like them. But it was fun to see her move and feel her move at the same time. The OB said she seems very active and happy!
The last appointment of the day was by far the best. It was with Dr. Bove. We have heard such great things about him that I was almost worried I had built him up too much in my head. Well, this was not the case at all. He was amazing. He was easy to talk to and very confident without being cocky. He answered all of our three pages of questions. My husband even had one that no one had ever asked him before. I am not sure if this is a good thing or a bad thing.
We mentioned that we have been in contact with two of his former patients and he knew both of them off the bat. You could tell how much he cares about his patients. He shared a really touching story with us about his oldest living patient. She is 25 now and a few summers ago she came by to visit Dr. Bove. She had just graduated from undergrad and was going to spend a year doing some post grad studying in Australia. As he told us how well she was doing and how she didn’t have any other surgeries after her three, I couldn’t help but feel optimistic for our little girl’s future. This was obviously a high point of the day.
This “quick” update is much longer than I intended but believe it or not, we have many more details about the day to share. So check back later and we will have some more information.
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