Shannon summed things up pretty well in her post.  We’re both writing because I’m at the hospital tonight with Sonia and Shannon is back at the Ronald McDonald House with Faye, and neither of us will be going to sleep anytime soon.

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Here are some more technical details:

Before today’s surgery, the doctors thought that Sonia’s heart function was above average, particularly its ability to squeeze.  The problem is that, you can only see so much with an ultrasound and heart-echo.  What they saw was Sonia’s heart expanding and contracting nicely.  If you think of squeezing a hand pump to inflate a tire, it takes a lot of pressure to squeeze that pump each time.  If you cut a hole in the pump, its much easier to squeeze, but that’s because some of the air is going out of the hole instead of into the tire.  That’s what was happening with Sonia’s heart.  It was contracting fine with the leak, but once the leak was fixed and there was some real pressure against it, her heart just couldn’t squeeze hard enough.  So, in a strange way, her leak was a bit of a blessing.  If she had a fully functioning valve, her heart may not have made it these 4 months.

Sonia is on ECMO simply as a precaution.  It was a long surgery and her heart was working on its own afterwards, but she had unstable pressure and heartbeat.  In order to reduce the risk of an acute incident over the all-critical first 48 hours, Dr. Spray ordered her on ECMO to allow her to fully heal.  If she recovers as expected, she’ll be off in a day or two.

Taking the transplant road brings all kinds of new challenges and unknowns.  We haven’t even met with anyone to discuss anything regarding a transplant, so we don’t know much right now.  Here’s one thing we do know: When Sonia is off ECMO and stable like she was before surgery, she will be in a far better state for a transplant than she would have been after birth.  So all she has been through has not been in vain.

Here’s what we don’t know:

  • How long will she have to wait to get a heart?
  • Will she come home before she has a transplant?
  • Will she be better of with a new heart as opposed to the planned surgeries?
  • What is the expected outcome of transplant surgery?
  • What kind of life will she have with a transplant heart?

Please, please don’t bombard us with these questions.  We simply don’t know, and right now we need to concentrate on the task at hand, getting off ECMO and recovering from this surgery.  We will surely let everyone know when we find out information about the transplant.  Just realize we are probably talking about months, not days.

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It is surreal to see Sonia on ECMO again.  Just when we felt like we were out of the woods, the knife gets twisted in a little bit deeper.  We have so much faith in this little girl and she has done so incredibly well at surviving.  “Beating the odds” is an oft used phrase, but Sonia really does it time and again.  No one deserves to go what she’s gone through and it pains us terribly to see her like this time after time.  Our love is deep, but we are running on reserves right now.  It’s especially hard to be strong as a family when we are all in different places, and trying hard to keep life as normal as possible for our healthy kid.  Deployments will start for me in a matter of weeks and I have no idea what we will do then.

Your prayers and love go a long way towards keeping us going.  Please continue to send them.  It’s times like this when we need them most.