Journey to B.B., part 3

We went to our follow up high-risk OB appointment, two months after B.B.'s diagnosis. I didn't think that I would mind being at that office. I had accepted her diagnosis and began to think of it as just another appointment. But being there definitely wasn't just another appointment. They have this system (which I understand for the kind of office they are but as a patient is awful). The sonogram tech does the sonogram and takes all the photos and isn't allowed to tell you anything. Leaves the room to discuss things with the doctor (even though that's not what they tell you they're doing) and then the doctor joins you in the room. The whole experience of being there is emotionally exhausting and every time I see that doctor I want to punch him. I think that has less to do with him and more to do with the fact that he only ever has bad news for me but still. 

So B.B. is considered to have hydrocephalus, in accordance with the size of her ventricles. The cranial-spinal fluid in her ventricles went from sizes 8 and 10 to 12 and 20. Below ten is normal, above 15 is hydrocephalus. Interestingly enough (and somewhat unfortunately) her skull is a normal size. So the additional fluid in her skull is putting pressure on her brain matter and forcing more of it into her encephalocele, which has grown from a half inch to an inch in diameter.

I've accepted her diagnosis but I still want the best of everything for my daughter. So it's hard to accept that she will only get worse, losing more brain matter to the encephalocele. I've been very hopeful for her outcome since being educated about what this means for her but the more brain matter she loses, the harder it is to be hopeful. Not that I won't do everything possible to help my daughter be everything she wants to be, it's just hard to find hope some days.

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