Tuesday, July 17, 2012

Turn up the volume.

Bonnie has been working on finding her voice since she was extubated last week.  When she was on the ventilator, her breathing tube went between her vocal cords, preventing her from making any sounds.  In theory, now that she's extubated, we should be able to hear her cry.  The first couple days they didn't necessarily expect her to be very loud because her vocal cords could have been swollen from being intubated for so long.  By now, though, any swelling should have gone down and we should be able to hear her...but we really can't.  We can hear her cry occasionally, and it sounds like a normal baby cry but with the volume turned way down.  Anyway, it's gotten to the point now where her doctors are wondering if there's something else going on, and they've gotten the ENT (ear/nose/throat) folks involved.  It's definitely not a big deal in the grand scheme of things, and we should know something more in the next couple days.

Meanwhile, in Good News Land, Bonnie has been doing awesome with her feedings.  She's still getting them via her NG tube, but she's up to 35cc given over 90 minutes, every three hours.  So far no problems with spitting up, which can be a big issue with CDH babies.  I figure the reflux will kick in eventually, but we're really happy with her progress so far. Yay Bonnie!  They're waiting to try feeding by mouth until her vocal cord situation is sorted out, to make sure she can protect her airway and not aspirate while she's eating.

They've been slowly weaning her pain/sedation medications, which so far hasn't been horrible.  They did take a couple days off of weaning because she was showing some signs of withdrawal, but today they were back to weaning.  (For any CDH parents reading this and wanting details, she's currently down to 3.2 mcg/kg/min of versed and 4 mcg/kg/h of fentanyl.)  At some point they'll switch to scheduled doses of her medicines, but at the moment she's still on continuous drips.

This is the part of the journey where things have started going very slowly.  It's going to take a long time (i.e. several weeks) for Bonnie to learn to eat and wean off her medications.  She's doing *great*, but it's still going to be a long time before we bring her home.

Thank you all for praying us to this point.  God has been so so good to our family.  Please continue to pray that Bonnie would do well with her drug weaning and learning to eat.  Please also pray that her vocal cords kick in and she finds her voice.

Here are a few pictures of our sweet girl.

And because he's cute and awesome, here are a couple of Henry.


  1. Wow, Bonnie looks a lot like her big brother! Prayers going up for her continued improvement in all areas.

  2. Will be praying for a big loud strong voice! Way to go on the feeds, Bonnie!! That's awesome!! Glad to hear that reflux hasn't been a bad issue. Hope it stays that way!

  3. Seriously beautiful kiddos!! So proud of lil' Bee. Keep rockin' girl!

  4. Beautiful girl, love the pink blanket and sheet. Makes her look "girly". Can't wait to see her dressed in all her pretty clothes. Praying for a strong voice to go with her strong will. She needs to take after her brother with his loud voice (or at least his loud cry as a baby anyway).

  5. Hope she does find her voice soon and a quick recovery back home.



  6. Your kids are very cute! Bonnie is sooooo beautiful! I'm so glad she's doing so well! Hooray for no reflux so far! Praying for her vocal cords to kick into gear so you guys can get oral feeding under way. :)