Thursday, July 25, 2013

The beginning of this journey....

Our journey began on August 16th at 12:12 pm , Jaxson was born. I had a pretty normal pregnancy except for having some high blood pressure( more because I get nervous in hospitals) towards the end of it, but it was monitored and everything seemed fine. Jaxson was born a 7 pounds 15 ounce screaming healthy baby boy. It was not until he went back for his circumcision that we found out that his life and our life would change forever. I can still remember that moment like it just happened yesterday. The pediatrician came into the room with our son and said have you look in your son's eyes? Do you see the white little dots in the middle of his pupil? My stomach and heart just dropped... What was he telling me? Was my newborn son going to have to grow up blind? The doctor looked at me and said your son was born with cataracts. Cataracts? I thought to myself, aren't cataracts usually only seen in older people? I looked at the doctor and asked, " is my son going to be blind?" He looked at me and said " he will have a long road ahead of him but there is a surgery that will remove the cataracts, you will need to go see the specialist tomorrow after you are released from the hospital." I looked at my husband and then I looked at my day old son, and my heart was just breaking. I was not ready for this, I was envisioning taking my son home with my husband and starting our life as a family. But now we have to go see a specialist who will tell us whether our son will have a normal life or not.  I looked at Jaxson and I just held him in my arms. My tiny little man now has a long journey ahead of him, one that we never asked for or even imagined would come to us. Out of that little boy would come so much strength, more than I would ever even imagine.

I honestly do not think that it hit me until Dr. Birdsong (his ophthalmologist) looked at us and showed us where his cataracts were. They have to use a metal prop to hold his eyes open so that they could examine him and all I can remember is him crying and whaling, his little body just screaming for me. It still breaks my heart to even think about it. Dr. Birdsong then told us that the sooner that these are found the better. If they had not found it before the age of 1 or 2, Jaxson would have been blind.  He then proceeded to tell us that he would need to have two surgeries, one at 5 weeks and then the other eye would be at 6 weeks old. He explained that the cataracts would not grow back or come back but we would need to be vigilante because he could develop glaucoma.  He would need to wear contacts probably for the rest of his life and we would need to take them out and clean them and put them back in weekly. At this point, my life just felt like a whirlwind, everything just became a blur.... How am I going to get through two surgeries with my newborn son... We haven't really be able to enjoy having him home yet and now we have to worry about surgery.  The doctor also suggested that we get some tests done to see if we could find out where the cataracts came from, if there were even a source.

From there we would bring our little man home but would have to go back countless times during the next month for tests including genetic, blood work and other tests as well. They also told us that he would need to have an MRI to make sure that everything was all right regarding his brain. Little did I know that the day of his MRI would change my perspective on our situation completely.


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