Risky Business- 23 days to go

What are the risks of surgery?

This is the part that no one wants to hear about. The "what if" section.

Now, I've said it before, that I really am a glass-half-full kind of person, but when it comes to your own child, it's hard not to think of all the possible what-if's and explode them way out of proportion. I am doing my best to curb some of those thoughts, as my worrying doesn't make anything better.

Anyways, in this section, they reference the heart-lung machine (also called a "cardiopulmonary bypass). This is necessary for an open-heart surgery. This makes sense to me, to have to use this machine, as I would rather the surgeons were working on a heart that is still and than one that is moving and has jobs to do. The heart-lung machine (HLM) will essentially be Piper's heart for the duration of the surgery. They kinda just plug all of her vital parts into this machine and she ticks away.

Well, actually, I have NO idea how it actually works. I mean, I know it oxygenates Piper's blood for her, and basically does the things her heart would normally do, but what baffles my mind is how they hook the darn thing up! I don't imagine it's just as easy as plug-and-play. How do you start? This diagram gives me somewhat a better idea of what is going on, but I still don't really understand completely (will I ever? Maybe after my med degree? Pah.) I like how they use the image of the old woman... probably for her double by-pass surgery or something... I just think she is kinda old and cute.

I do know they use a drug to slow Piper's heart down (not sure if it stops it?) and then they can start hooking that up. I am really starting to appreciate those anesthetists. I can't even imagine. What a precise science.

Anyways, my book says that in general "complications after open-heart surgery are rare - they occur in about 1-3% of cases". That is a pretty good stat, but not great. 1% is still huge. In every baby born, there is a 1% chance they will have a heart defect, and my baby was that 1%.

They state that the most common complications are:

- bleeding post-surgery

- heart rhythm problems

- a permanent pacemaker may be needed

- infection, minor or severe

Now, if these are the risks, I think I can handle those. They are all quite fixable (though a pacemaker seems a bit over the top!). They also mention that some kids might have inflammation of the sac that surrounds the heart (pericardium) after surgery, or fluid around the heart and lungs. They they say that this is an inflammation, not an infection. It is called Post Pericardiotomy Syndrome (PPS), and there is a 2-30% chance of getting that after an open heart surgery. They do say that you just feel kinda ill when you have it, or maybe irritable, but nothing they can't fix with some aspirin or steroids.

Everything has a chance of this or that. Risk everywhere. It is all just a weighing game: do the pro's outweigh the con's? Like I've said in an earlier post, we could opt out of this surgery and just let Piper live with this heart defect. She would probably be fine well into adult hood (Dr said maybe 45?). But what kind of life would that be? In our circumstance, we are willing to take great risks at the chance of having an even greater life.

Will my child need blood products, and are they safe?:

Apparently, they will need to fill the tubing of the HLM with blood products (I love how they call it "products"... I think it just means "a stranger's blood"), or if they use something not as rich, then it reduces the oxygenation of the blood in the machine and is not great for baby.

They do mention that some parents are interested in giving their own blood (if it's a match?) or even, if the child is big enough, for them to donate their own blood for the operation. I kinda like those ideas. I mean, I know Piper isn't big enough to donate (well, at least I don't think so), but I think I would like to consider it if I were a match, and I think Matt would too.

Don't get me wrong, I trust blood-donor blood. I know there have been issues in the past, but I firmly believe that the blood they would be putting into a baby would have been tested for just about everything (see, glass half full). I just think it would be pretty cool for our blood to be flowing through her veins. I mean, as parents we give our kids everything we possibly can within our grasp, and why not try to give them our own life-blood? Our blood already flows through her anyways, why not keep it that way?

I think I will ask about that. Just to see... Otherwise, I do feel comfortable with a blood-donors blood (and I have to remember to thank everyone who does donate!)

Again, it is healthy to admit there are risks involved, but it is not healthy to dwell on those risks. Life is a risk. I can just remember all of the risks of getting pregnant, and you have to overcome those because you are more focused on the end goal. If you actually sat down and considered all the risks of bringing a child into this world, then no one would! It's crazy risky!

But just the same, we are focused on the end goal: a healthy girl who can live a life like anyone else, with nothing impeding her, knowing we've done everything we can to make her life as glorious as possible.

And if there is no risk in life, we would all be crawling at the walls out of boredom.

Here is a little video of Piper from 6-8 months (she'll be 8 months on Wednesday!). Hope you enjoy!