Friday, July 31, 2009

Day 17-Girding Our Loins (and Having a Tubby and a Binky!)

Not a pretty picture, I know, but it's about where we're at.
We had a face-to-face meeting with Dr. Jennings to flesh out the details of Rafa's airway repair surgery, and we as a family feel much more calm and sane about what's going on Tuesday. Here are some more details:

Dr. Jennings has performed surgeries similar to Rafa's many times before, even if the extenuating circumstances are different.

"Moving his heart" has already happened! During his original repair surgery, Rafa's heart was moved from the left side to the right by his surgeons, which is a bigger deal than what they plan to do on Tuesday. Dr. Jennings will only be raising his heart off of his right airway, not shifting it from one side to another.

No word yet on what will be used to reconstruct the airway--could be Rafa's own tissue, could be cow heart. Who knows?

The surgery should take more than half the day on Tuesday, which is why Dr. Jennings reserved the OR for so long. According to Laurie, our social worker friend, surgeons have a habit of doing this to hedge their bets in case some portion of the procedure takes longer than anticipated.

The risks: largely bleeding-related since Rafa's on ECMO and receiving blood thinners. Any other risks, Mommy, Daddy and Grandma Sherrie didn't want to know about.

Rafa will be far more stable undergoing this surgery on ECMO as opposed to being on a ventilator, since his airways won't be asked to heal and work at the same time. According to the Great Ken, our ECMO god, many kids who need airway reconstructions are put on ECMO specifically for that reason.

Last but not least, Dr. Jennings feels Rafa has a good chance of making it through his surgery. And so do we.

Please concentrate your thoughts on this being the last great hurdle our baby love has to overcome and that he can slowly and surely advance through his recover.

Now for some fun stuff!

Mommy changing a poopy dipes!

Wiping off! (That's Nurse Melissa's arm on backup)

Wonderfully charming toxic waste

Fresh, dressed, and ready to party!

Giving a binky a go


  1. This is a big ray of hope. I'm so glad to hear that you're more calm after the meeting with the doctor. And I so love the pictures.

    More healing and loving thoughts for Rafa...

  2. More boatloads of love and support headed your way. So glad the meeting went well. love!

  3. VERY cute pics! He is *so* adorable!
    So glad the meeting weng well - it sounds very positive.
    Then it'll be on to 10-12, 10-12!
    Love forever. -J

  4. The beauty of daily life! Glad to hear about the meeting. The next few days give all of us on Team Rafa the chance to really gear up and think/pray/bless/support like gangbusters come Tuesday (and all the days before and after)! Love you all very, very much.

  5. Hello, I found your page through someone who posted about you on twitter. I'm a CDH mommy to an angel. Your baby is so beautiful & is full of light. I'm going to be praying for you. Also, I'm moving to Brooklyn soon, so if you ever need someone to talk with, I can be of some support. Here is a link to read up about Gregory.

    Love and Peace..

  6. You are such a beautiful baby, Rafa! Sending positive thoughts, prayers and lots of lots of love~ Tia Anabella