What do you do when....

What do you do when your world crashes down as the doctor says something is wrong with your sweet little baby? You grab onto those people who will help you through, put your head up and tackle through the challenges as they come.

The fiancé and I have been living in this little scary place since M was 4ish months old. Our GP found a heart murmur, referred us to a local paediatric cardiologist. He did a couple echo's and sent us to BC Children's for an attempt to correct the pulmonary stenosis(narrowing of the pulmonary valve) which ended up to not be successful. While we were there the cardiovascular surgeon advised that there could be a syndrome that was at "fault" for her heart condition. Back we went home. We saw our GP again and she agreed that the syndrome could be there, back we went to our cardiologist, he also agreed at the potential for the syndrome and ordered echo and ECG for me and another echo for M. I turned out fine and M..well apparently echo's aren't any more fun when you're little than when you're big (although we know enough not to scream :P). After all this our cardiologist sent off a genetic referral so we could find out for sure if this syndrome was there or not.

So a couple weeks ago we(M and I) went into the genetic counsellor. She agreed after poking and measuring both of us(apparently I'm 2 inches shorter than I thought I was :() that we have this syndrome. It's not chromosomal so we wouldn't have known even if we did the testing before M was born, heck I lived up until now completely unaware that I had it, but I did pass it onto M.

So with all this information the fiancé and I have decided to just enjoy having our perfect little family of three. We don't feel the NEED to have more children and we don't want to risk having another child with the syndrome that has some of the more severe complications and end up being in the hospital constantly and not just enjoy life with M. Was this a hard decision? Yes, neither of us knew for sure we wanted more than one child but we also hadn't put it out of the question. It is hard to realize we'll never have the do-over early months to not stress and be frustrated and just enjoy newborn-ness but we're okay with that now.

There is never a guarantee that a child will be healthy even with two "normal" parents but when we know that there is a 50% chance of that baby not being perfectly healthy why risk it? Many people have said "well there is a 50% chance of that baby not being sick", yup you're right. We're seeing the glass half empty but we're the ones who have to pick up the pieces of the glass when it gets broken and mop up the milk that gets spilled.

Dr. Google is normally bad but Dr. Google also explained what CAN be associated with our syndrome. We've been lucky(knock on wood) so far to avoid some of the big problems but we know we'll never be out of the woods on the what-ifs.

So we have our beautiful little only baby and are enjoying every moment of watching her grow up into a toddler and as time will go a big kid and then oh-gosh a teenager and an adult.