Sunday, August 2, 2009

Day 19-One Hill Climbed, Another to Follow...

Always seems to be the case.

Dr. Jennings mentioned in passing on Friday that there could be a concern about fluid in Rafa's lungs, as in, in the lung tissue he's already grown. The culprit could be a narrowing of his superior vena cava (SVC), and while there are procedures to correct the problem, this could involve further surgery for our baby beyond Tuesday. The word on the street is that all of this testing is being ordered (echo-cardiogram and a cardiac cath, which means injecting contrast fluid into his heart and lungs to track blood flow) so that his surgeons aren't surprised on Tuesday when they go in to repair his airway. But that doesn't mean we're not scared out of our wits.

While Rafa is a source of infinite strength, he still needs his body to cooperate in order to heal and move forward with his recovery.

He's beat back similar demons before. Let's keep giving him all of the ammunition he needs to stay on the right path.

As soon as we know more, we'll let you know.

P.S. Auntie Edie, he loved "Rafa Bird." :)


  1. He's already shown how good a climber he is and this next hill will be the same I'm sure. Every day he inspires me about how to live - strong, brave, and with hope.
    Team Rafa continues to grow and vibes are sent by the hundreds.
    Scared is natural, but the Emerald City (Juan: read Earth) gets closer every day.
    Know that our precious little one is an inspiration and a life teacher for us all!
    Love forever, John

  2. So happy to meet Rafa today - He is beautiful and an incredible inspiration to us all. We are thinking of you, hoping for you, praying for you, and you are in our constant thoughts. Raising him up high! Much, MUCH love to all of you! xoxo,d

  3. I'm so glad Rafa liked his story. =) We are always with you and love you more than you know. Candles are lit!

  4. I just found your blog and want you to know that I'll post a link so that those that follow mine ( can follow yours. ....I've updated myself from a little before you found out that baby Rafa had CDH to now. ...He sounds like such a little trooper. He is adorable and has already impressed me! He will be in my prayers and I'll do my best to spread the word about this beautiful little one. Chanda