Baby Update

Well, it seems I may have to go back to blogging on a more frequent basis.  Unfortunately, it's not so that I can pass along pictures of baby all cuddled up at home, just a few days old.  It is  because on June 13th, we were told our son has a Double Outlet Right Ventricle.  What the hell is that you ask?  Join the club!  Basically, the left ventricle of his heart did not form in the first few weeks and will not ever be functional.  His heart will only ever pump from the right side. 

After much crying and talking and researching and praying, we decided to jump in with both feet and hope like hell.  We are scared and unsure of what to expect.  But, we are committed to giving Jackson (yes, that's his name) the best shot possible.  The doctors tell us that his quality of life should be no different than you or me.  He will walk and talk and hug on us.  He will eat us out of house and home and spend many Saturday afternoons in timeout, just like his brother.  He will go to school and play sports (if his mother can stand the idea of allowing him!) and hopefully die an old man, having lived a long and full life.  A mother can only hope.

I will be set for a repeat c-section, sometime the 2nd week of October.  Not exactly the birth plan I had in mind, but, the plan none the less.  And the OCD in me needs to plan as much as I am able, to hopefully gain some control over my fears.  I will deliver him at Denver Children's Hospital.  We will have a few short days to bond with Jackson before handing him over to cardiac surgeons.  He will under go three rounds of open heart surgery in the first 3 - 4 years of his life.  Sadly, the first one will be in the first few days.  I remember crying when I handed Mason over to the urologist to be re-circumcised.  This is going to be heart wrenching for sure.  The only plus I can find in knowing ahead of his birth, is that he can be born in a room full of doctors and nurses who already know he has some issues, they know what those issues are, and they can step in at a moments notice and help him.  I foresee myself loosing my shit in that delivery room.  Maybe I can tip the anesthesiologist and ask for the good stuff?!?

Chris and I will spend the remainder of our pregnancy trying to enjoy it, but also meeting with cardiologists and surgeons and social workers and god knows who else.  It is going to take a village to get us all through this, and I know we will come out the other end a family of 4 blessed people, who know without a doubt, each and every one of the members of their tribe.  We are loved and supported by so many, and that means so much.

The more I reach out, the more of these kids I find.  And the majority of them are doing really well, and the best part - they are totally normal.  Luckily the first 2 surgeries are done so early, they have no memory of it.  They are just normal kids, doing normal things, living normal lives.  Those same moms and dads were right where Chris and I found ourselves.  Scared beyond belief, and putting their baby into the hands of strangers.  Their courage to carry on helps me find strength and courage myself.  If they can do it, and come out the other end, then damn it, so can we.

I will try to update as often as there is news.  But, also be sure to tune in for Mason pictures and funny stories too.  I can't let him get lost in all of this.  I love that little boy more than anything on the face of the planet (well, maybe his dad runs a close 2nd!) and I need his life to remain as stable and normal and balanced as I can.