Awaiting the Specialists

     With a week and a half wait between finding out our daughter's diagnosis, and being able to meet with specialists to get more answers, research, praying, and spending time with loved ones has been the best ways to fill my time. I am very anxious to get answers, understand more about her conditions, and begin the long road of establishing an immediate and long-term game plan to give her the best life we possibly can.
     While all of this is a good way to try and fill the time, the shock factor of this situation is not fading, nor do I think it ever will. I find myself sitting here, thinking I am fine, thinking my thoughts are elsewhere, only to be proven drastically wrong.
     Yesterday morning, Tuesday, January 29th, 2013, I was doing just that; sitting on my bed, thinking my mind was elsewhere, getting ready to log onto Facebook or do more research, when BAM! I was hit with another massive flood of emotion. I started crying uncontrollably, my nose started bleeding, and I started hyperventilating. All I could do was call my sister, Tammy, and force out the words "Tell me to breath!" She talked me down, she reassured me, she got me breathing again... She reminded me of the loving and supportive family I am blessed to have, that we all will be here for this beautiful baby girl, that no matter what happens, we will be okay. After this break down, I was able to gather my thoughts once again, and continue to think clearly while researching.
     I have been informed that the specialists are going to want to perform an amniocentesis. This is where they use a needle through your belly, enter the womb, and obtain a sample of the baby's blood. Joe and I have already decided to refuse this procedure because it brings unnecessary risks to the baby. The point of the amniocentesis would be to confirm the Spina Bifida; however, the Spina BIfida has already been confirmed, as all of her defects are clearly seen on a low resolution sonogram. Having an amniocentesis comes with many risks, one of those risks includes killing the baby.
     One thing I am preparing myself to do is knowing when to put my foot down with decision making. We are going to have to be advocates for her best interests because, just like with any other baby, she cannot advocate for herself. Sometimes, this means telling the specialists, nurses, doctors, surgeons, etc. "No." Sometimes, saying "NO" is the best thing you can do. If it feels wrong, if you're unsure, if your gut is telling you otherwise, find out why. Chances are, there is a reason your instincts or God or your baby is speaking to you in a way you might not be able to understand, but I know it is my job to figure it out.
     I may have more to say before my meeting with the specialists on Wednesday, or I may wait until after I meet with them to post more. Either way, I'll be sure to give all information I can, and if my experience can help someone else, in any way, I will have achieved something.