Untethered

You may not recognize the baby at the top of this post as Lucy because she doesn't have any tubes attached to her precious little face!  That's right...she is officially untethered and no longer connected to oxygen or a suctioning tube.  She couldn't be happier and neither could we.  We got to take her on a family field trip to the parent room in the NICU, where she took a nap and Jason and I watched some educational videos in preparation to go home.

Yes, you read that right...we are actually talking about bringing her home soon!  Our doctor is back tomorrow and assuming that things go well over the next few days, we should be able to take her home by next week.  As always, we are cautiously optimistic that things will go well.

As we shared on our last post, she has had a variety of tests over the past few days to follow-up on a variety of issues:

 - She had another echo, which showed that her VSD is very slowly getting smaller, so we will continue to follow-up on it every 6 months or so.


 - She had a renal ultrasound, which showed a small amount of reflux into her kidneys - again, nothing is needed at this time, but we will continue to monitor

 - She had a scope study by an ENT doc which showed at least partial vocal chord paralysis.  We haven't gotten the official results yet, so we will know more tomorrow what long-term problems that might mean for Lucy and the extent of the damage.  Typically, this is monitored by serial studies to see if the vocal chords heal on their own.  This is likely a result of the many times she had tubes down her throat - mainly the ventilator.  Vocal chord paralysis also often brings swallowing problems along with it, which we know Lucy has.  This one is scary for us because we weren't expecting it and we don't know what the long-term outcome will be.  We have read a fair amount about it and are hopeful that this will resolve itself with time.  The good news is that the paralysis is not complete - she can definitely cry!

Lucy continues to be awake more and when she is, she loves to interact with people and toys - she's been a big fan of her little stuffed animals - Eleanor the Elephant and Larry the Lion, pictured here.

As always, thank you for your support - we can't wait to share the news of her coming home with you!