Friday, June 15, 2012

Slow progress=progress

So, it turns out that giving an update on Bonnie now that she's here is way more difficult than when I was just musing and speculating prior to her birth.  It's hard to know what to say when people ask how she's doing, because all day long, I sit in the room with her and take notes on what her ECMO settings and ventilator settings are, results of her x-rays, ultrasounds, and echocardiograms, how much and what medications she's on, etc.  I have an overabundance of technical medical data that (I would imagine) would make most people's eyes glaze over.  Jonathan and I are so in the middle of it all that it's hard to summarize what's been going on.

However, if you want a very general summary, it would be this:  Bonnie is doing really well.  Even though she's on ECMO (which I come to appreciate more and more everyday), she hasn't had any significant complications.  Her settings are slowly being weaned, which is what needs to happen before she can come off ECMO and have her hernia repair surgery.

The weaning process is going a little slower than it could, due to some blood volume issues, *but* as of this afternoon she was at 66% support, down from about 90% just a few days ago.  Once she gets to 40-50%, the conversation will start turning to having a "trial off" to see how she does.  If she tolerates it well (and she might not the first time, which is okay), she's one step closer to getting off ECMO completely.  What a glorious day *that* will be!  (Also a scary day--once you're off ECMO, there's no turning back.)

We've been told by several people that Bonnie is a feisty little fighter.  (That was something I prayed for while I was pregnant with her...might regret that when she's a teenager. Ha!)  I'm so glad she has some fight in her to beat the CDH monster, but at the same time, she needs to be more chilled out at this stage so that ECMO can work more effectively.  Yesterday they ended up starting her on a versed drip, which is a sedative.  She's been on morphine from the beginning for pain, but even with that, she tends to get agitated easily, which causes her blood pressure to go up and her oxygen level to go down.  Neither of these are desirable, because we want her to relax and conserve her energy.  The versed did seem to help chill her out, so that was good.  I do kind of cringe every time they have to go up on or add another medication like that, though, because that's just one more thing she'll have to  come off of eventually.  I need to keep in mind that weaning off narcotics isn't life threatening, but not having enough sedation at this point *could* be.

As far as prayer requests, we would love for you to pray that the ECMO weaning process would continue smoothly with no complications.  Also please pray for Bonnie's right lung (the good one) to stay nice and open--we don't know yet how much lung there is on the left side, but one of the doctors said yesterday that she heard breath sounds on that side, which is a great sign.  Also--she has something called a pleural effusion, which is essentially fluid around the lung where it's not supposed to be.  Please pray that this resolves on its own and doesn't signify a major issue.  The doctors aren't worried about it *at all*, but it still freaks me out.

That's it for now, folks.  Thank you thank you thank you for your love and concern for Bonnie.  It seriously means the world to us that so many people are thinking of and praying for our baby.


  1. This makes my heart feel happy! I feel like Sunni and Bonnie are alike in that their both feisty. Thanks for sharing (and educating). :)

  2. I'm glad to hear she is a fighter! I'm praying for you and Bonnie.

  3. Still praying for Bonnie with baby Jude. Hang in there. From Texas.

  4. Can't imagine sitting where you are right now, looking at all the settings and meds, and knowing you have to be patient. Will keep sending prayers for the ECMO and the pleural effusion to go away without complications. Prayers are also for you and your family.

    Hang in there. Give Bonnie a little finger squeeze from me.