and the battle has just begun

July 21, 2010 I peed on a little stick that would forever change our lives. When that first line showed up I was expecting that to be it, just like all the months before. I was about to throw it away with frustration when the second little blue line spread its way across the stick I blinked hard and took the other test. Same result! I burst into tears and woke up a sleeping Amber from my bed asking her if I was reading it right, though after a year of testing every month I was basically a professional pee stick reader. I couldn't believe it! Finally, we were blessed with the gift of life. For the next few months I daydreamed about life with our new little addition, it excited and frightened me all at the same time. Benjamin was deployed when I took that test but I made sure he called home as soon as he could and he was as excited as any dad to be could be! For months I had ultrasounds and was always told things looked great and healthy. Benjamin came home and we went to our first appointment together two days ago. We were excited and anxious to see our baby on the screen and find out if it was little boy or girl. We noticed the tech measuring the head and looking at it pretty closely, but oblivious with our happiness we thought nothing of it. She continued the ultrasound checking out the kidneys and feet saying it all looked good and the heart had four chambers just like it should. Looking back, that was suspicious. She took the pictures and some numbers that printed out and said she was going to take this to the doctor and maybe when she got back he or she would let us see the gender. She came back with a doctor who said she was going to take a look at our baby and immediately my heart sank. She looked at the head again and I asked if something was wrong, she said we would talk about it when she was done examining and the tears started flowing. From what I actually heard of the things she said, there was something wrong with the skull and brain and it started with an "e." That's about all I got out of that before I buried my face in my husbands shoulder and bawled my eyes out. He was so strong and brave for me, I am so thankful to have him. Next thing I knew we walking to the car to be on our way home.

I googled everything I could on our baby's condition and learned the real name of the dreadful "e," encephalocele. A 1 in 5,000 rare birth defect where the skull does not full form in a spot and the brain and tissues begin to form on the outside, between the skull and skin. 20% of these babies are born alive and only half of those will survive. We were devastated. My eyes burned and my head pounded, the benadryl couldn't kick in fast enough. I didn't want to be conscious for another moment. My whole world came crashing down in a matter of minutes..what was I supposed to do now? We didn't know anything as far as the severity or the prognosis, NOTHING! All we knew and still know, is that we will be med evac to Hawaii for further testing sometime next week. A million things went through my head that first day. Could this have been prevented? Is this my fault? Should we say our goodbyes now? Do I distance myself from the baby and prepare for the worst? Do we terminate because of the slim to none chance of survival or do we let this little solider fight as hard and as long as it can? I prayed and cursed God at the same time, I cried until there was nothing left and went completely numb to any feelings and just waited for the day to be over so I could sleep and not think anymore.

It has only been two days but the love and support we've received has made this world's easier to cope with. Today I am hopeful and optimistic. The more we look up things associated with encephlocele the more we are hopeful it is a misdiagnosis. There have been quite a few cases of an encephalocele diagnosis turning out to be nothing more than a cyst! The condition is also normally accompanied by kidney trouble, club foot and is also at the front and back of the head whereas our little one's is on the top. I am holding on to every bit of hope I can find and taking this one day at a time.