Santa Baby

Well I won't bury the story on this one: We had our UVA followup yesterday and because Molly has been gaining weight and eating better, they want to HOLD OFF on listing her for heart transplant. This is actually pretty huge because UVA has been adamant that heart transplant was her only option left. We had already done all the medical tests and social work screenings and the application was sitting at our insurance company waiting for final approval. We appreciate that we have doctors who are willing to reevaluate.

As with any good news about Molly, it may only be temporary. Her health is still volatile and her heart function has not really improved any—she is still considered to be in moderate heart failure due to dilated cardiomyopathy. It seems like overnight she just started eating better and gaining weight faster even though nothing about what we were doing had changed. Of course, we're hoping it's a sign of better things to come. But as always we're scared that she could just as easily regress as she has progressed. But for now, were taking it as a Christmas miracle and birthday present for Brian (today!).

We knew she was doing better going into the appointment (though still has that dang feeding tube), so Brian and I were hoping for news that her heart function had improved. He said it was the same. When I pushed he said it was maybe a "smidge" improved. But also that he does not expect her heart function to really get any better. The damage is done. I asked what this meant long term...are we only delaying the inevitable transplant? Could she live a life in moderate heart failure? He seemed to say yes and that he was following a teenager right now in even worse heart failure than Molly who is able to go about her life. Frankly, our ultimate goal is to get Molly out of the woods and be able to keep her heart (heart transplants do not last as long as you think they might...average 15 year life span on a new heart and 2nd transplants don't last as long). I truly believe that if we can do this, we can wait for new medical procedures to help her that will avoid ultimate transplant all together. Even right now there are trials for a band that fits around the heart that squeezes the ventricle for you (heart failure is basically that your ventricle doesn't squeeze as it should) and another study about injecting heart stem cells (not the embryo kind) back into the heart. It has already shown to improve heart failure in adult patients.

Anyhoo, that's our hope, but it's very far off. We're still one day at a time and hoping to get through the winter without any hospitalizations.

Also during our appointment we witnessed a first. They were completely giddy because Molly is finally on the growth chart!! After being diagnosed with failure to thrive and having a pretty volatile up and down growth she is finally on the chart. In fact, her growth "curve" for the last month has actually been more of a 45 degree angle. Steep gains. She is officially at 6.62% (the nurse tried to say 6.6% but we worked our ass off for that .02 and we're taking it :). Last month, she was well below 0%. Her height also made it on the chart entering at a whopping 8 1/2%! 

Some new stats on Molly since she is now almost 11 months!

Master of:

- waving

- hugging (animate and inanimate objects)

- showing how big she is (sooooo big!)

- peek-a-boo

- standing with support

- high five-ing

- making her parents get her things she can get herself

She may or may not have:

- newfound separation issues as witnessed by suddenly waking up in the middle of the night, every night screaming unless we pick her up (which we try very hard not to...sooooo hard)

- said "hi" to mom

- chosen a favorite cat

We're staying home for Christmas this year to avoid inevitable travel sickness. But right when we thought it was going to be just us, Brian's family booked a hotel to come for Christmas! Yay! So we'll have a big 'ol Coffey Christmas. Hope all is well with all of you. Thanks for all of the continuing prayers and support. It's working!

We're working on uploading some videos to YouTube and will post when they are up!