September 10, 2014

sometimes I blog.

And sometimes I decide that I hate blogging on the iPad or laptop or my parent's computer and I wait and wait and wait until I'm in Salt Lake so I can blog from the iMac.

So let see... where did we leave off??  RUTHE'S BIRTHDAY!  That was almost two months ago - sheesh!!

After her party we kicked it into high gear to get ready for her next surgery.  This time around we were ready, and a little more relaxed.  It kind of scares me to think that open-heart surgery is turning into a "normal" thing for us.  Like, I don't think I'll ever be able to work up enough nerves to be a concerned parent if Ruthe or any future babies need any other kind of surgery.

Did I ever tell you that the day she had her g-tube placed I left almost immediately afterward for my own doctor's appointment?  For some reason that makes me feel like a terrible person...

ANYWAY - back to the real story.  Ruthe's third open-heart surgery was a modified Rastelli procedure.

This is the best picture and explanation I've seen of the real Rastelli - but Ruthe's was juuuust a little different.

Because Ruthe's aorta and pulmonary artery were already combined to form one mega-artery, when they closed her VSD the right side of her heart wouldn't have any output.  Yikes!  So to fix that they put in a Contegra.  It's a vessel/valve taken from a cow's neck and connected from Ruthe's right ventricle to her pulmonary branches.  That way the blood from her body can be taken to her lungs, oxygenated, and then pumped into her body.  This surgery (and it's success!) means that Ruthe has a two-ventricle heart.  Just like she's supposed to!  It might have taken a while to get there, but we made it!

Her surgery went so well.  There was a little concern that she might need a pacemaker, depending on how well her VSD closed (whether or not there was still a good amount of blood flowing into her aorta) but there ended up being no issues - so no pacemaker!

She spent 11 days in the hospital this time.  It felt like it just flew by!  Her recovery went almost as well as surgery.  There was just one little hiccup when they started her feeds back up.  Apparently surgery can sometimes affect the lymph system, which can in turn affect the way the body releases fluid.  There's always a good amount of fluid build-up around the lungs and heart after this kind of surgery, but it starts to diminish after a few days.  When the lymph system gets confused, and they start feeding you again, the fluid starts right back up, and it generally has more fat in it than it should.  To remedy this problem, they switch Ruthe to a formula called Portagen.  It has medium-chain fatty acids (instead of long-chain ones) and for some reason that does the trick.  She has to stay on that formula for six weeks, to make sure the "leak" has fixed itself.  We're on our last can of Portagen and then she'll be on Pediasure +Fiber.  I'm REALLY looking forward to the switch because the Portagen is s.t.i.n.k.y!!  

They also thought that she might need to come home on a little bit of oxygen.  I was not excited about that!!  After her surgery, while she was still on 100% oxygen, the cardiologists said that she should be anywhere from 92% and up.  Well, that's what the PICU staff wrote down and that's what they were sticking to!  Luckily her surgeon came in on Sunday morning to check on her (we were planning to go home that day, but had to wait for Ruthe's home health company to deliver oxygen) and he said she would be fine anywhere from 84% and up!  Since she had been satting around 89% whenever we turned off the oxygen that meant everyone was happy and we could LEAVE!

It felt a little like a jail-break.  We packed her stuff up so fast and were out of there as soon as I could sign the discharge papers!!  Seriously - she had a dose of aspirin due right around the time we were leaving and the nurse walked in with it right as we were clicking the carseat on to the stroller.  It was awkward for a second, but I said I'd give it to her at home AND THEN WE LEFT!!

For some reason it's always rainy when Ruthe's in the hopsital, and the day she left was no different.  But as gloomy as it felt outside we were all just giddy with excitement!  This was the last time (fingers crossed, knock on wood) that she'll be in the hospital overnight for the next couple of years!!

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