Wednesday, June 10, 2009

32 Weeks and the Rug Gets Pulled Out From Under Us

We came to Children's Hospital Boston through the grace of fortune and a dear friend who is a high-risk OB at Brigham and Women's Hospital. Ever since then, we've found the doctors, nurses, and staff to be nothing short of miraculous in their genuine love and support for families in crisis during what is supposed to be a joyous time.

And so, honestly, we couldn't have heard this difficult news from anyone more tactful, honest, and optimistic: our baby boy has gone from a lung volume (how much usable lung he has) of 12 at 24 weeks, to 7 at 32 weeks. This means he has a 50/50 chance of making it. What was so jaw-dropping about this news was how many positive milestones Rafa has met up to this point, and to think that he has so little lung in an otherwise "perfect" body was a hard pill to swallow.

We're now looking at ECMO for sure, possibly EXIT surgery, and a long, difficult road ahead. What's keeping me afloat is the idea that our baby has already met so many challenges head-on and been successful (positive ECHO finding, no other chromosomal abnormalities, surviving and thriving in growth and development), and thank goodness he's been able to do all that, with so little lung volume! That's what makes him our little healer...

More soon, complete with pics, I hope!


  1. So glad you've started this site. It will be a good place to process, share, and find support.

  2. Agreed to that! Our thoughts are with you in Seattle.

  3. You are in our thoughts and hearts here in Brooklyn. We are sending good energy, fairy dust and lots of love.

  4. We love you Phoebe, Juan, and Rafa! xo