Wednesday, July 8, 2009

July 14th = Happy Birthday to Rafa!

We have a plan, ladies and gentlemen! Spread the word!
We were called into the AFCC to have an impromptu meeting with Dr. Jennings, Nurse Linda, Laurie our social worker, Nurse Donna (a new face on the scene), and the three of us to talk about our options and make a final decision.
And we have.
Our baby love will be born next Tuesday, July 14th, via EXIT-to-ECMO (see our earlier entries for an explanation of what that entails). The procedure will begin at about 8:00 AM at Children's Hospital, and will involve the following:

1. Baby is delivered and placed on ECMO.
2. I'm sewn up.
3. Rafa is whisked off to his own operating room to have his repair surgery, as in, the organs that are in his chest are moved to his abdomen (he might need an additional patch other than the one replacing half of his diaphragm--this one would act as a skin graft in case he doesn't have enough skin to cover his abdomen with its new organs).
4. He is taken to his room in the NICU to recover and I am taken to my room at the Brigham. As soon as I am allowed, I go over to Children's where we spend as much time with our new miracle as possible.

A couple more pieces of very hopeful news: all of the MRIs have shown Rafa's organs that are currently lodged in his chest, including his heart, to be formed completely normally. That's right! For all of their malformation in terms of location, he has all of his parts that are, in theory, ready to work the way they are supposed to as soon as they are placed where they belong.

Last but not least, Dr. Jennings drew a picture for us that took our breath away--as of two weeks on ECMO, provided Rafa makes strides and stays healthy as everyone is hoping he will, his lungs will be of normal size.


They will still have their challenges, including pulmonary hypertension and possibly uneven size, but they will, on paper, look like everyone else's lungs!

What a tremendous gift.

Thank you, Great Poker Game in the Sky! That's where all of our relatives who have passed on are sitting, being crass, betting money they don't have, and talking smack.

In other words, being related to us.

We can't wait to see him! It's been so nice to experience some normal mommy and daddy emotions and anticipation.

Keep the good thoughts coming! We're almost there, and we couldn't have made it without you all!


  1. I will be thinking good thoughts for all of you on Tuesday! Good luck to you, Juan, and Rafa.

  2. That is amazing news! Thank you so much for sharing this news with us, as well as the whole story! I will definitely keep you in my thoughts and prayers, especially on his birthday!

  3. And isn't it so fitting that your little fighter miracle boy is arriving on Bastille Day, a day of independence and celebration!? Endless love and good thoughts your way! xoxo

  4. Great news! Rafa is an amazing boy!can't wait for his birthday and to see him sometime next week!

  5. So good to have a plan. I am storing up sparkles this week for a big burst next Tuesday.

  6. TUESDAY! So excited! Putting it on the calendar right now... Sad we won't be able to stop in at the end of the month to see you on our way through to Maine, but I think you will be very busy being a MOMMY!

  7. That's wonderful. Can't wait to meet Rafa!

  8. Bastille Day! It certainly will be a Revolution (and an easy day to remember)