Thursday, September 4, 2008

Neurosurgeon update

So like I stated we received Jude's brain sonogram results, but the new news is they told us today that "there is a large CSF communicating defect within the cranial fossa." When I asked the pediatrician what that meant he had "no idea". That was rather comforting (did I pack my angry eyes?). The report also made reference to having another MRI to rule out "Holoproencephaly". Anyway, he said the best bet would be to contact Cooks Children's, and they wanted us to contact them prior to leaving the hospital today. So I put a call into Dr Roberts who has to be one of the nicest doctors ever! He did call me back, and spent a long time talking to me on the phone which is somewhat comforting. I (of course) had done some research on Holoproencephaly ........ don't look it up! It is very scary, and I don't think that is what Jude has. Basically it's where the brain's hemispheres do not separate and therefore are midline or one. When we had the in utero MRI I know they said they saw the hemispheres. I also asked DR Roberts that since Jude is sucking, swallowing, doesn't have facial anomalies, etc then isn't that unlikely and he agreed. He then added he thought the sonogram report "was a poorly written or at least hard to understand. Granted the Dr was from a different country and that he would probably understand it better when he reviewed the CD". So the bad news is lil Jude has to be put under for his MRI and spend the night at Cooks Childrens. I hate this more than ANYTHING! I thought maybe God would think we had enough, and therefore they would just say he had some larger brain vents, but was fine. I guess we just won't know until we have the MRI, and even then we could get awful/good news and still not know until he is older. So we are just trying to enjoy our time with him being a newborn, but I hate the doctors reports looming over us. A part of me doesn't even want the MRI, but like Mike said if this is due to a blockage we have to know and get him fixed. If it's because he will have problems then he won't ever do without and we will treat him normal! He seems like a very healthy little boy though who just sucked down 2 ounces of formula, and 2 mls of breast milk (I am not producing a lot right now and he is a bit jaundiced so he need fluids). We have to go back to the pediatrician tomorrow who still claims "I would never know there was an issue without that sonogram because he seems so healthy". He said his jaundice score was a 9.3 so we are going back, but he looks much better to me. I struggle with all of this, but I feel in my heart that Jude will be OK. I struggle that we went through such a long difficult pregnancy laced with Jude's issues and today we get more possibly discouraging news. No one wants to leave a hospital with orders to go see a neurosurgeon with Cd's and reports in hand on your newborn.
Now let's switch gears and talk about the fact it's very unfair that women go through the PAIN of delivery and you end up looking FIVE months pregnancy still after birth. As my cousin so eloquently put it "like your stomach is a warm puppy laying next to you". ha! I mean it should just be a life rule you suck in and go back to normal. I am happy to be home, and Emily is just thrilled with her little brother. Since I am pumping she gets to help feed him, and she just loves it! Oh and this little baby already raises his head off your shoulder when you are burping him. He also looked EXACLTY like Emily's infant pictures. My husband goes "OH MY WORD!" when I showed him their pics side by side.
Dr Roberts nurse is calling us to schedule an initial neurological exam with him, and then they will schedule his little procedure. I will update as the days go on. My family is getting here on Sunday and I am super excited about that. Thank you to everyone!

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