What we know so far...

Everything seemed very normal in the beginning. I got morning, evening and even night sickness my first trimester but that was all to be expected. My first hint that something was wrong came at my 16 week "quad screen" which tests for various birth defects. I had heard that these things are notorious for scaring women with false positives so when I got a call the next week saying that I had an abnormal result I didn't much care. "How abnormal exactly?" I wanted to know. I wasn't prepared though for the numbers I received. My heart did flip-flop a bit when it came back a 1 in 10 chance for a neural tube defect such as spina bifida. But still, I calmed down after thinking a bit. I'm a stats nerd. 1:10 means only a 10% chance that something is wrong. Simple subtraction tells me that makes a 90% chance that everything is fine. I'd bet on those odds. And I did. I was hardly worried at all when they set me up with the maternal and fetal medicine specialist for a lvl 2 ultrasound that same week. My only thought was "Cool! I get to see my baby again and find out the sex sooner!"

My husband and mom came with me. The ultrasound lasted about 45 minutes. They took so many pictures! I watched her kick her feet and wave her hand and wiggle all around, moving so fast the tech had to be quick to keep up with her. She even finally dropped her modesty and showed us that she was a girl. Everybody in the room was grinning. When we were done, the tech called the doctor in, but instead of seeing only what I saw (a pretty little baby girl), he saw what I couldn't: a problem. The doctor showed us a pretty clear shot of the top of her head. "This." he pointed "This is not what we want to see." He pointed again and we stared, straining to follow along. He went on to explain that she had "the lemon sign" and "the bananna sign". I was waiting for him to hit me with some corny punch line, but no fruit salad jokes were ever uttered. Instead he calmly explained something called the Arnold Chiari II malformation and why it was an indicator of spina bifida. Basically the brain and spinal cord are a set of water pipes. If there is a leak in the pipe, the pressure changes and all the water (or in this case cerebro-spinal fluid) seeps down toward the leak. In the developing fetus, this change in pressure and the resulting "drain" down the back are enough to pull the brain backwards. This means the frontal cortex retreats and pulls in at the sides...like a lemon. While the cerebellum (which should be butterfly shaped) gets pulled backwards toward the neck and squishes out to look like a banana. By itsself this malformation changes the shape of the brain but not its function. In other words, parts might be shaped differently, but they still work exactly the same. The problem comes in if part of the hindbrain herniates down the neck INTO the spinal canal and causes a blockage. Then when you only had a leak before...now you have a leak in the bottom and a clog at the top. This results in hydrocephalus (or excess fluid on the brain). It is this fluid that can cause injury to the developing brain and why (as I mentioned before) 80% of kids with spina bifida need a shunt...most shortly after birth.

On that first lvl2 ultrasound at 17 weeks, the doctor thought he saw the spinal opening on her sacral spine...but couldn't be sure b/c she was still so small. So we had to wait three weeks and come back. These three weeks were hard, but not for why you'd think. I was totally believing that when we went back, we wouldn't see the same lemons and bananas and that the whatever-it-was on her lower spine would be gone too. So mostly I was stressing to hear "good news". I was expecting it.

It didn't happen exactly that way, though. The doctor still saw the Chiari II at 20 weeks. Her head was measuring small because of the change in its shape...but there were no signs of hydro. "Not yet" said the doctor. Then he repeated "yet". It is a severe case of chiari for an opening so low on her spine. Speaking of locations...we could now see that the lesion, originally thought to be sacral, is actually lumbo-sacral going up higher than precviously though and extending all the way to the tailbone. At least thats what it looks like right now. That information is nothing I'm holding fast to. These things seem to change. The other good news (besides the continued absense of hydro) was her feet and legs. She can move them like a dancer. We even watched her flex her ankles and tap her feet. The doctor was encouraged by this. "It may change, though". He warned me. "Leg function usually decreases with the growth of the baby and the exposure to the amniotic fluid." This was not a shock, I had read that already on google. The doctor also said that any surgeon would want an amnio done (where they draw out fluid to test for chromosomal abnormalities). Bj and I requested a moment alone to discuss the matter. We both teared up...frightened by the idea that the amnio could cause a miscarriage. But in th end, we decided the risk was small enough and the benefits would be better treatment for Evangeline.

We go back again May 27th to have another lvl 2 ultrasound and we should get the amnio results back next week. Right now we are back in "waiting mode". We are waiting for our third ultrasound. Waiting for her future surgeon to contact us later this week to meet with him for a consult. Waiting for my OBGYN to refer me to another OB who will deliver Evangeline by c-section at Baptist downtown where she will be taken to Wolfson's children's hospital. I hope to meet the new OB soon and get to know him before "the big day". I don't think I'll see him that much. Mostly its Evangeline's doctors I'm getting to know real well. (They really are great!!)

I will keep everybody updated as we find out new details. :) "Good news" here we come!!!!