Day 51: A miraculous day

Miraculous. Purely miraculous. Lily is showing meaningful improvement! Doctors caution us that she is still very sick, symptomatic of pneumonia, lots of fluid in her lungs, with one collapsed and one partially collapsed lung - but that she is, without question, improving. She has gained another 200 grams in the past two days, so they are giving her another diuretic tonight - but the lungs are what docs are focused on now. Water weight won't kill her - not being able to breathe, however, is a different story altogether.

Quite wondrously, Lily has been weaned throughout the day from her oxygen, all the way down to 45% when we left! She's still on the oscillating ventilator - but when we got there at 9am, she was on 80% oxygen. By the time we left, they had successfully weaned her down to 45%, without causing her distress or desat episodes. (We just called the NICU and she is holding steady at 40%. Really just amazing news.)

We are very, very cautious about getting too optimistic - we're pulling ourselves back, and refuse to go down that "everything's going to be OK" path again - but the fact her condition is not deteriorating is really tremendous - miraculous! She is such a FIGHTER. She is a WARRIOR - strongest person I have ever seen in my life. She is fighting the battle of her life with her thumb-sized lungs - and today, she is winning the fight one breath at a time.

Sara and I feel guilty about taking so many people on this roller coaster with us. The highs and lows are pretty unbearable, and we were wondering if we should just hold off on updates during the particularly scary times. That said, we don't want to keep people wondering; it's not fair to those of you who have been following Lily's battle. The blog is getting about a thousand views a day now - so much though we hate this roller coaster, and hate that we're taking everyone on this crazy (hellish) ride - it's a roller coaster we are still glad to be riding. As long as it doesn't go off the tracks, we're strapped in and holding on. Our only regret is that now, you are too. In a way, it's like we're all riding a passenger train along a steep mountainside. We're all on the train. (Well... maybe you're all buckled in the cars and Sara and I are walking along the tops of them. But Lily's driving... she's never driven a train before, though. She's learning.

Thank you everyone for the outpouring of support, well wishes, and prayers. I firmly believe they are working miracles. You know when you catch your spouse saying something that you had just been thinking? Or when a loved on calls you just moments after you had though of them? I'm not sure what that is, but it exists - I think we've all experienced it once or twice. I very much believe that Lily is strengthened by all of the people praying for her - it is a good feeling to know that hundreds of people around the world are rooting for our little baby.

Thank you - from the bottom of our hearts - thank you so much for helping push Lily along in her battle. She continues to hold the line - and she made meaningful progress today. Tomorrow is another day, that's something we are always aware of - but focusing on Lily's strength, and focusing on hope pulls Sara and me going... hope keeps us strong. So do you!