Thursday, May 23, 2013


Someone might crawl soon!
Has this past two years been a prologue of what may be ahead? I'm not sure... but I do know that it is not our entire story. Despite all we've both endured and enjoyed over the past 22 months, we've only just begun. And now we look forward to the next chapter.

Norah is coming home. 

No - she isn't coming home today, but the end of our hospital stay is in plain sight. Norah has now been on the home ventilator since 8am Tuesday. If she can stay on it continuously for one month, our girl will finally discharge to home. There are many tests and trials ahead for the next month, but everyone is very optimistic. I told Jeff that it will take quite some time at home for me to truly believe that no one is going to take our girl away from us.

This is not a guarantee that things will go as hoped. She could get sick. She could simply not do well on the home vent for so long. Her recurring labs could come back terrible. We don't know what will happen. But again, we're all optimistic.

I believe in Norah, and I believe in our family. We're almost there. Coming home will not be easy. I will be her nurse (and we joke that Jeff will be our CNA). We will be doing a different sort of juggling, but it will still be juggling (likely with less sleep involved). But our family will be happy, healthy, and together... and that is what matters. Thank you all for your continued generosity and support. It was my (somewhat) secret hope that Norah would be home before her second birthday, and it looks like that just might happen. I may not have brought a baby home from the hospital, but I'll take that silly, sassy toddler without any complaint. Let the countdown begin.

Sleeping sweetly on Saturday's day trip...
for the first time ever in her own crib at home.
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