Updates!!!

I know I've been bad and haven't updated recently but I think sometimes its better to have a whole beginning, middle, end to an update anyways =) or I'm making excuses. The truth is the last couple weeks have been so hard on me I didn't even realize how hard til I sat down and tried to type it all out. I have heard many times how well I handle this situation and while my one true wish for every woman who goes through this is to enjoy her pregnancy I couldnt look you straight in the eye and say its easy or there arent really dark days where you want nothing more than to remove yourself completely. I suppose the more toward birth we get the more serious and real everything gets and its a hard transition. It is a very ugly truth that no amount of research or knowledge can prepare you emotionally for this. Sure, cognitively Bryan, I even my mom whose been to nearly every appointment and researches just as much as us know what seems every possibility, every surgery Chase may be faced with, every outcome, every bump in the road, this can all be found easily online through a wide community we never knew we'd be so closely apart of but how do you prepare yourself emotionally. How do you prepare yourself to say yes this is the doctor I trust with my baby's body, brain, future, life. How do you prepare yourself for the surgeries you first baby will or may have to go through when its so unknown. He could have 1 surgery his first year his first day or he could have 20 maybe 30. Its ugly and hard but its life and as long as Chase is here, happy and healthy, I'll be a happy little duck. I am trying to really teach myself that none of us are here, happy and healthy every day of our lives and in that way Chase is going to be perfectly normal. I read a funny quote that I keep thinking about. God never gives us more than we can handle, I just wish he didn't trust me so much! =)

So I'm pretty sure that while short, I mentioned that we went to LA and werent happy with our visit. We went again last Thursday to meet the neurosurgeon. The neurosurgeon will be the doctor who does the closure surgery on Chases back and if needed (we hope not) places a shunt (man-made device that drains fluid from the brain into another area of the body). These doctors also follow the baby after birth into adulthood checking on their brain function and shunt maintenance if one applies, etc. A shunt is very scary to us and while they are often life saving and can be considered wonderful for the pressure they relieve off the brain, they can also be very scary and have high risks that include malfunctions that can result in severe damage or even death. Once one is in theres really no going back and so if possible of course Bryan and I don't want him to have a shunt. So its important to us to have a doctor who values our opinions and is willing to wait to see if Chase is symptomatic and requires a shunt rather than some very old school beliefs that if a baby has fluid in the brain you shunt him case closed. It can be alarming to read how many people have been told their child needed a shunt and fought it and that its 5-6 years later for example and theyre doing fine without one. I know this is not always the case but we remain confident Chase may not need one as the fluid in his brain has stayed very consistent throughout the entire pregnancy at a relatively low measurement considering the normal and average. We have also been told over and over again how important the MRI would be and what a manifest to more knowledge about Chases specific lesion it would be.

So with that all being said it has been a very built up ordeal for us to finally meet the neurosurgeon he should be our know all, tell all. I cannot tell you how many times we have heard these past few months "That's a question for the neurosurgeon." So when we walked in with our long list of questions and expecting guidance we wouldnt have even thought to ask about, we were severely disappointed when we met Dr. M. I seriously wanted to scream when fine he wasnt a pediatric neurosurgeon but then every answer was I don't know and I cant read this MRI for you, I dont read these thats a lab tech job. It really put me over the top when I found out there was a better doctor available but we werent assigned to him and this guy basically seeks guidance from him but didnt sound like hes done very many of these closures. He also sounded like he was certain they would shunt Chase right away. He also told us very bogusly as we had our reg doctor check and show us after that Chases sac is ruptured so it didnt matter what kind of birth.
Mix this all in with the previous weeks visit and I was so done with that place! Unfortunately we have kaiser so there arent many options for us.

Being so desperate we even called Oakland totally prepared to head back up north rather than stay with LA, sure enough they confirmed that what we were being told wasnt a proper consult at all and not how they would do things. We were recommended however to not go up since they felt we should request to be seen by the other neuro in LA....So when we went to our reg appointment with our wonderful high risk Peri Dr. D. we were on the fence if we should complain but she was so understanding and upset with our care in LA. The whole team in Riverside were on the phone making calls and before the appointment was over it looked like they were going to send us to San Diego, which is not much different distance wise than LA.

So thats where we're at I spoke with them yesterday and the Neurosurgeon they assigned us looks like a heaven sent! Harvard Graduate, did his internship, residency and fellowship at Stanford and is the president of the neurosurgery association of San Diego. So far were impressed and he seems highly recommended from what Ive read. We meet our new team on Tuesday so I hope things go better for us as it is stressing me out to be getting further and further along with no team and plan in place!