Sunday, November 8, 2015

Numb -Ventriculomegaly Post 1

Numb.
Or, I wish I were.
Baby M has looked good at every ultrasound. Every. One.
At 20 weeks, we went over everything. Every piece of family history. The tech kept moving back to his head. I've asked at every appointment "is his head too big?". The answer is always no. Always. But this time, she stayed there. She kept looking.
When she was done, she told us to come back at 26 weeks just to be sure. He had a little bit more fluid in his ventricle then they like to see, but only a little. And, it might go away. So, they just wanted to double check.
We met with our Dr. after. He wasn't concerned. He looked again. If it were a huge deal, the tech would have called us in. In fact, he even told us to wait til 28 weeks so that the ultrasound corresponded with our already scheduled visit. So, we did. I analyzed the way people phrased things, exactly what they said. And, Casey. Casey doesn't panic. Ever.
At 24 weeks, our Dr. Very casually asked if we still had a follow up target ultrasound scheduled. He didn't sound concerned, but you don't ask that because you are making conversation. Casey shrugged because he must have just looked at our chart and was following up.
At our 28 week appointment, we had the same tech. (And, I love her too. She's so friendly and way smart) She made conversation. Maybe I wasn't supposed to notice how quickly his heart, legs, kidneys could all be checked and how often she went back to his head. It seemed like she spent less time then at 20 weeks on his head. Obviously, Myers cooperates with no one and wouldn't move for a better look or measurement of anything. His head still looked a little big, so she recommended a perinatalogist. Then at the end, she said that Dr. Davis needed to look and maybe he would be less concerned. Dr. Davis was at the hospital doing a delivery so we had already scheduled to see him the next day. Then, we went and did our glucose test. Yum.
The next morning, I got a call from the Dr's office. It was early. Dr. Davis had already looked at the ultrasound. They had already scheduled a follow up with the perinatalogist for 9 am the next day.
When I saw Dr. Davis later, he assured me they always get people in super quick so they don't panic. Which, obviously, I was already doing. It's just a precaution because of family history.
Friday morning, we spent plenty of time with another ultrasound tech in the new Dr's office at the hospital. Again, double check everything. Kidneys were good. Heart was good. She was amazing. She told us what measurements should be, and where we were at. Everything looked good. Except that one thing.
You have 4 ventricles in your brain. 2 lateral that can be seen, and 2 below that where the cerebral spinal fluid drains and continues on. Normal fluid is below 10, high is 10-12, above 15 would be a diagnosis of hydrocephalus. On one side the fluid measured 9.5. The other side measured 14. I'm so thankful she told us every measurement as she went. Of course, again, as always, Myers would not move his head for a better view and measurement. We went back to his head at the end and remeasured. I hoped maybe it was just a bad measurement. It was still 14. Then we went into a separate room to wait. We met our new Dr. (Now I guess we just have 2) and a genetic counselor.
They went over causes:
1. Infection
2. The tube draining from the ventricle wasn't anatomically big enough and would possibly require surgery.
3. It might just need to be monitored as he's growing. I can't exactly remember this one because it was obviously too positive and we didn't talk about it much. This is usually mild cases, 10-12, not 14. 
4. Genetic --but hydrocephaly is X linked so think that through. (Hint- are you sure it's X linked? Hypothesis much? )

Our options at this point were:
1. Monitor
2. Amniocentesis which may tell us the cause, but they still wouldn't do anything until after he's born
3. Blood work which may eliminate 1-2 causes but still wouldn't give a definite answer.
4. Fetal MRI
The outcomes will be unknown until after he is born. The positive includes some developmental delay, maybe surgery and continue on with raising our buddy. There are less ideal outcomes, but I think you can come to your own conclusions without me writing them. I'm not ready to acknowledge the existence of other outcomes yet. 

We were to report to the genetic counselor the next day what we chose to do and scheduled a return appointment for 2 weeks. Depending on measurements at the follow up, there was potential that we would deliver at the U so that we could be next door to Primary Children's, but we wouldn't decide on that until our next appointment and measurements.


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