So we finally had an appointment with the actual endocrinologist today. The last time I saw him was the day after I gave birth. Which means I was finally able to get some straight answers from someone who knows what he's talking about.
My baby's pituitary gland is not exactly missing entirely. I mean it's not where it should be, but there is still a small part of it somewhere in his head. The posterior pituitary is still present, it just isn't where it's supposed to be. So he is missing the other two parts of his pituitary, but one of them is in there which is better than we thought. He called it ecto something I think. Anyways this is good it means his body is making a few of the hormones he needs. We still will probably have to replace his growth hormone. We won't know for sure until he is about two years old. Do you have any idea how much growth hormones cost? About somewhere in the range of $30,000 a year for an adult. Fortunately pharmacare should cover it or we'd be screwed.
I'm feeling rather satisfied after talking to the endocrinologist. He confirmed what I thought, that it is a very rare condition, but they have had a few patients with disorders like this one, and that the hormone replacement should take care of everything. The doses won't be high enough to cause any side effects because they are not treatment doses, they are just replacing what he is missing and so everything should be fine as long as we keep up with his meds. He should by all means develop quite normally.
I also asked if they knew that caused it and he said that they do not know for sure because it is so rare, but reassured me that it was nothing I did during pregnancy. I asked about the possibility of having a second child with the condition. He said that there might be a slight possibility that it is genetic but with all the cases that he's encountered or heard of none of the children with this problem have any siblings with the same issue. So maybe the next one won't necessarily have the exact same problem. Of course I am sure I will worry about it all the same, as with everything else. We women have so many things to worry about with any pregnancy, like the list needs be longer.
Tonight I am making a sling for C. The one I have for me is just a little too small to be comfortable for him, but baby loves the sling and it does make things so much easier, so I don't see why daddy should be deprived of the experience.
Next post will have pictures I promise.