Part of what's so frustrating about being a CDH parent is that you're constantly on the lookout for "your story": what other babies have your lung volume, your predicted outcome, your due date, etc? It's often a hard match to strike, as CDH is such a fickle and mysterious disease that there's no end to its permutations. But after returning to a blog I'd visited before and digging a little deeper, I think we've found our match!
I encourage you to follow along with www.ellawest.com as we have been. Ella is almost two years old and her CDH presented very similarly to Rafa's. Her family was quoted similar facts and figures to ours, she was even due in early August (but came a little earlier)! I suspect that there are many aspects of her ECMO experience, surgery, and slow road to recovery that we'll have in common, so if you're interested in seeing where we are and where we're going from another perspective, I highly recommend you check it out. And she's a gorgeous baby to boot. I found great peace and hope in her story last night, even in its darkest corners (and believe me, they're there).
It's the power of not being alone, I guess.
Rafa will see his first farmer's market today, as the sun has returned to Roslindale! Woo hoo!