Heading to the neurosurgeon

I had a fetal MRI done last Friday and we got the results on Wednesday. First let me just say that I never want to have an MRI done again. I thought the tube that they put you in was much larger than it really was. I get very claustrophobic...not good. I did very well though with the exception of an itch that I couldn't get to because of the teeny tiny space and just about freaked out but really, no big deal! And now for the results, not that much of this will make sense to anyone reading. She has ventriculomegaly which means the ventricles of her brain are enlarged. They have increased in size substantially over the last month which leads them to believe she has obstructive hydrocephalus near the aqueduct of Sylvius, a condition called Aqueductal Stenosis. All these fancy words basically mean there is an itty bitty blockage where the ventricles meet. At this time the ventriculomegaly is being classified as moderate to severe which is making our case more urgent to be seen and may possibly mean in-utero shunting. We see the neurosurgeon next friday to go over the MRI and ultrasound films and get his diagnosis. So far the information that we have are opinions from my perinatologist, radiologist and OB. I am actually hoping that these are pretty accurate guesses as this seems to be the best form of hydrocephalus. As far as delivering goes, she will be delivered cecarean and be evaluated immediately with a possible transfer to Phoenix Childrens. If they do in-utero shunting now she would then go into surgery to have a more permanant shunt placed. Other than her brain she is perfect. She is small, in the 8th percentile for size but seems to be completely healthy. Hopefully we will get a more solid idea of what we are looking foreward to next week. Our neurosurgeon was classmates with my OB and is the top pediatric neurosurgeon in Arizona with extra research in hydrocephalus and shunting, and for me something I thought was important is he is LDS. That's it until I have more information to give.

Carly news and update

 

I finally got pictures of Carly that I could post on the computer! Its so fun to brag about my pretty girl. I've been waiting until today to post an update and it looks like I still don't have much information, but here's what I've got for now.

We got the rest of our amniocentesis results back last week and they all came out normal. Hurray! Now that we have any chromosomal (is that a word) disorders ruled out we have been waiting to see if the brain swelling has gone down, stayed the same or increased. Today was the dreaded yet long awaited appointment for a repeat scan and fetal echocardiogram. I can already tell that we have a little Thad on our hands...very stubborn. She wasn't in the best place for the scan and refused to move. No amount of pushing, jiggling, turning on my side or laying on my stomach would get her to move from her cozy little spot which happens to be breach with her head right under my ribs. Regardless of her stubborn ways we got a pretty good look at the heart which seems to be perfect. Her brain unfortunately has continued to swell which leads us to having a fetal MRI done on friday...again more waiting. As of now the brain doesn't look like it is malformed which goes in our favor. There isn't much we can do until we have the MRI results except for wait. We will continue seeing the radiologist monthly to monitor the swelling as well. We are waiting for a referral to a pediatric neurologist who will most likely require her own testing, aid in the delivery and then treat Carly after she is born. It is highly unlikely that this will resolve on its own having continued to swell over the last month but we are hopeful that it is nothing more than a small blockage that can be fixed with surgery. She is still my pretty baby and I can't wait for her to be at home with us. Until then, I know that she is in good hands being watched over by her Nana B. After our appointment today we stopped to visit her and I felt comforted knowing that someone so special was there to watch over Carly until we get her here.

That's it for now. We probably wont know much until next wednesday at my regular visit with the Dr. We are continually thankful for all the prayers in our behalf.