Why the blog?

This is my first attempt at blogging.  It's never much interested me probably because once you start it, it's pretty pointless unless you keep blogging.  As a self-admitted commitment phobe, the thought of starting this frightens me.  However, this is the least of my worries.

My thought is this:   Why not let everyone I know and care about, know about Leah and her life. I know people wonder exactly what the problem is and how all this transpired so I'm going to tell you. And, because I no longer know how to answer the questions:  How is she doing or Is she doing ok?  She will never be ok.

You see, Leah is special....she is a 1 in 10,000 kind of special.   Little Miss Leah has what's called  Hydranencephaly which occurs in 1 in 10,000 births.   When you look this up, you won't find a ton of information and what you do find, well......

Our little girl came to be with us 10 weeks early on October 18th, 2010 via emergency c-section.   I had noticed for about 18 hours that she hadn't moved which was very unusual for her active little self throughout my pregnancy.   Shane and I decided a trip to the doctor couldn't hurt and honestly we weren't too worried at this point.  Dr. Brown found the heartbeat right away...it was strong and very normal.  Still no movement so we scheduled a sonogram down the street at Wesley Medical Center for that afternoon or we could come back in the next day.....
                   Hind sight's 20/20:  The decision to wait would have changed everything.

So off we went for a sono very curious but at this point relieved since the heartbeat was good.   I have lots of respect for dr's and nurses and techs and really, anyone working in the medical field or anyone working period.   But, they do irritate me at times.....this is one of those times.

 I am not stupid.....maybe not smart either but I know when something isn't going right and within minutes, I knew the sono tech knew that something was very very wrong.   It's one of those gut sinking, frustrating times when someone knows something about you and won't say a gosh darn thing no matter how many questions you ask.  You know, 'the last to know everything' feeling.  Things were bad.....It was 'they are brining people in the room to see the sono'  kind of bad.   The silence was deafening and sickening and the tears were flowing.  I remember thinking, "How did I get here....what are we doing here.....how did this happen?"

My OB called soon after asking to speak to me personally and his words were simply this......things look really bad and I am going to need lots of help.   So off we went to high  risk OB for another sono and another "I'm sorry, I cant tell you anything" episode.  Really?... cuz I already know something is very wrong so tell me you........... I didnt really go there but a volcano of words were making their way dangerously close to my tongue.  I remember laying there staring at the cabinet doors wondering if they were going to open up and spill their secrets.  In comes the OB and simply says your baby is severely anemic and the blood flow is very fast.  She also has fluid around her abdomen and in her lungs.  What does this mean?   Her answer:  she could die.
                  Hind sight's 20/20:  Why didnt I ask what this meant for her brain.....This haunts me to this                  day.

Until then.......

*NOTE:  Hydranencephaly is not the same thing as hydrocephaly which is more common and very different.

 *If you want more information on Hydranencephaly go to:
www.ninds.nih.gov/disorders/hydranencephaly/hydranencephaly.htm

Look for more updates soon!