Snow Day!

Here are a couple of pictures of Gracie contemplating the foot of snow we had last night. Don't ask Daddy what he was doing out in it, but lets just say that shoveling the drive last night was a complete waste of effort.

It's been a month since my last post, and we have quite a bit of news.  Grace is thriving, and is still a happy and contented baby.  She spends most of her time off the ventilator now, except when she is asleep.  We recently saw her pulmonologist and we are going to work on weaning her off her ventilator altogether.  We have reduced the settings at night and she seems to tolerate it pretty well, although we are noticing that she takes longer naps, so perhaps she is a bit tired.  She is a devil at pulling her trach out, so we have to watch her carefully.  She did it once in the middle of the night, luckily Deb woke when the sound of her breathing changed.  Scarily, the vent did not alarm at all!  Grace was pretty unconcerned and breathed well on her own.  We are hopeful that she will be off the vent by the end of the year, and might even have her trach closed as well.  

We also met with her general surgeon.  We are going to start the process of reducing/removing her omphalocele on March 8th.  He thinks it can be done without the pain and trauma of having tissue expanders placed, instead it will be a two stage reduction.  The first will be in about 3 weeks and he will reduce her bowel and leave her with a much smaller hernia.  Step two will be in about 6 months to reduce it the rest of the way.  The idea is that Gracie needs a little time to adust to have her abdominal contents back where they belong.  It will be a big adjustment and she may need the vent again for a while, but nobody really knows how she will do.  She is pretty tough and takes everything in stride, so we remain confident.

So it seems like we are going to have another busy year.  Two abdominal surgeries for Grace and hopefully a removal of her trach.  She may also have to have her tonsil and adenoids out prior to that and a bronchoscopy.  The tongue reduction is on hold for now, since she seems to have a lot more control of it.  She keeps it within her mouth a lot now and we are hopeful she will grow into it as many BWS kids do.

On a sadder note, Grace's little friend Hope is back in the ICU after some complications from "routine" testing.  It was touch and go for a while but she seems a little better in the last few days.  Our thoughts and prayers are with Hope and her parents.