36 weeks

Battley is 36 weeks today!  I am going to update you on our cardiologist appointment we had yesterday.  I am still in shock so I hope that this will make sense...I'm not 100% sure it makes sense to me just yet.

A few weeks ago when we met with our Palliative Care doc he made this comment to me:

I feel like we have been preparing you and Adam for losing Battley early and should have maybe been preparing you to have her for a longer time.

I suppose it feels just like it sounds...Adam and I were preparing ourselves (not that you ever really could) for being "those people who lost their child" when maybe it looks like we are going to be "those people whose child requires 24/7 care".   I don't want this to sound like I was not overjoyed.  I WAS!  I suppose I was just in shock.

I put a pin in that thought all week to see how the tests yesterday looked.  HOLD ON TO YOUR SEAT!!!!!!

I could NEVER have prepared myself for what we were told yesterday!

In medical-ish terms, Battley's heart has pumped so much extra blood to her lungs that her lungs have developed a higher pressure...this is now preventing too much blood from going to the lungs (this is what the banding surgery would have accomplished).  She is now NOT a candidate for the banding surgery or a closure of the VSD (even if we could find someone willing to do it).  Now let me try to translate this:

The doc said that 20-30 years ago...before people understood Downs Syndrome (an extra 21st chromosome...remember B has an extra 18th) doctors would not operate on kiddos who had VSDs.  They were considered terminal diagnoses.  Doctors saw the same thing happen in those patients (lungs being overloaded and pressure going up to stop flow of blood) that just happened to B.  Over time these patients would have a hard time breathing.  Our doctor said that some of these kiddos lived to be 6, 10, even into their 20s.  She said that this is a SLOW developing problem.  Of course, as with the problem B had before we will cross that bridge when we get there.

To the parents of a child without T18, this would probably be devastating news.  But...THAT'S NOT US!  This is absolutely amazing!  Pinch me!  Years!  (Catherine does a cartwheel)  God's miracles don't always come tied up in beautiful packages the way we wish for them to come...sometimes they come in a very unexpected way!

I am still processing all this, but I am trying to be more open with the blog so I wanted to share.

Now for some Housekeeping:
Thank you all so much for emailing me about the g tubes!  It's great info and also kinda fun for me to hear about your families.  We are waiting on an appt with a GI doc to see where to go from here.

Check out a pic of B having her first EKG and one of her yesterday...in the first pic she was 6 days old.  Those are just stickers on her and this doesn't hurt at all.

I'll have to post the pics later...not working right now.

C