Saturday, February 8, 2014

Just briefly

Today is going to be busy cleaning the house and getting it ready for Megan's birthday party at 2:30. So far we have 9 confirmed girls and 1 maybe out of 16 total.  But no definite no's which has me worried.  I could still have 16 girls!!

But I thought I would take a moment and post that we met the surgeon yesterday.  HIs office switched the appointment to another time at the last minute and then we waited an hour past our new appointment time but I'd rather that.  In a way it's nice to know that he is taking time to do what needs to be done for the babies and not worried about trivial things like appointments with prospective parents!

Chopper and I both liked him and we feel that he will make the best decision for our son.  He got the impression that he is cautious about procedures rather than having a "well we can try this attitude" and we like that.  He will work with what he KNOWS -- or the best of what he can know.

I'm also comforted that final diagnostics will not be as invasive as I thought.  They won't do a catheterization unless there's a procedure involved.  He doesn't want to do one just to get a picture of the heart with the contrast dye pumping through.  Instead, they'll do several echocardiograms in order to get the pictures of his heart from multiple angles and gather all the information that they can.  

They'll be looking at a few things:  first the blockage of the pulmonary artery, second whether or not the sinusoids are diseased (if they are then we'll have to go transplant), third if his PDA is straight or squiggly -- that's a duct that I can't remember the medical name for at this moment but is present in all infants to divert blood to the lungs since they don't breathe yet but it closes after a baby is born.  They'll use prostaglandins through the umbilical line to keep it open until they are able to determine what it looks like.  A straight PDA means they can do a stent inserted through catheterization.  A squiggly one means they'll need to graft a shunt onto another part of the heart to divert blood flow and that will be a surgical procedure but one where they hopefully will use the heart/lung machine very little if at all.  They'll also be looking at the tricuspid valve.  The size of that will determine if they're able to "save" the right side of the heart.  But honestly, he says it's already appearing small which is not good.  Finally, they have some concerns about something that makes our baby unique -- oh joy -- tissue under the aortic valve that is causing a blockage.  They may be able to surgically take care of that tissue but if not, again we're in it for the transplant.

He talked quite a bit about transplant though.  Either way the options have a pick your poison kind of ring to them -- choose a partial heart but good immunity or choose destroyed immunity but a new heart.  Either way we'll outlive him.  Either way there will be issues pretty much his whole life.  But he's counseled us to seriously look into heart transplant and make a preliminary decision before the birth because things will most likely move very quickly once he's born.  Honestly, we haven't really considered it all.  But there's been so much to absorb and learn.  I've done some searching online and it seems as if the medical sites -- hospitals and doctors who have transplant pages -- gloss over it.  I want to know what life is like after a transplant?  What can I expect in my daily routine?  What will his life be like?  I'm frustrated by the lack of "real" information out there and hopefully I'll be able to find it here in the next two weeks.

Two weeks.  Thank goodness for a family who helps distract me from the dread I'm feeling!!!  The kids are still kids needing my attention, love, discipline, and for me to be a mom.  


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