Chapter 4: If Knowledge is Power…

…then why do I feel so powerless?

 

We learned a lot at our appointments today. I know more about the brain and about hydrocephalus than I ever thought possible. We met with Dr. Lee again and we met with a pediatric neurosurgeon named Dr. Chirney.  The most important, and hardest to accept, fact that we learned today is that we are in a waiting game.  “We have to wait and see…”, “We  won’t know until…”, “We’ll know more in a few weeks…” I know that the doctor’s weren’t trying to be difficult.  They always explained why we have to wait, but that doesn’t make waiting any easier.

Dr. Lee took ultrasounds and told us that her head is still about 2 1/2 weeks ahead of where it should be.  This means that the hydrocephalus is still a huge, horrible issue, but it also means that it has grown proportionally with the rest of her.  I guess its not getting worse, but its bad enough that that doesn’t mean much.   Dr. Lee also said he will need to monitor us every few weeks to keep an eye on the measurements.  If her head begins to get bigger (proportionally), then they will have to induce labor to spare me from a C-section or a long recovery. So we wait. . .

At Dr. Chirney’s office he looked at the ultrasound pictures while we talked to his nurse.  She explained hydrocephalus again and she also explained how it is treated.  It cannot be cured. We got to look at a shunt and a model of a normal human brain to understand how they worked.  She also explained that there are two situations with congenital hydrocephalus.  The first is that the condition develops very early in the pregnancy preventing the brain from ever growing at all.  The second is that the brain develops but gets smooshed to the side.  In the case of the first, there is no hope as a brain will never develop.  In the case of the second there is much more hope, depending on how far the brain had developed before being squished.  Considering how far advanced our baby’s condition is, it is clear that the doctor’s are leaning toward the first situation, but they won’t say that because “we have to wait and see…”

Dr. Chirney seemed like a fairly nice guy.  He re-explained everything the nurse had explained.  He also talked to us about what to expect after delivery.  They won’t perform surgery immediately after delivery.  He wants to make sure that her body is stable before performing brain surgery so he may wait a day or two.  We talked about quality of life. That was mostly depressing, so I’ll skip that for now.   He can’t tell if he can save her until after she is born. . . hence the waiting . . .

So for now, we wait.  We pray and hope that she doesn’t get worse. We pray and hope that the fluid goes away. We pray and hope that she has a brain once the fluid does go away. Our next appointment is Monday, April 19th.  Until then, we wait. And after that we will wait some more.