The care conference

  Lucy has been doing well since her last visit to the operating room.  As of Monday she is officially off all her IV medications.  She has only four tubes attached to her.  Three are for monitoring her vitals and the last is her oxygen mask.  She is on regular feedings of an ounce every three hours.  Doesn't seem like much, huh?  She has had some bouts of throwing up, so she gets some medications orally before her meal.  She is still on the formula, but we have started dips on the pacifier with breast milk.  She is really doing well with the pacifier so the speech therapist is going to try the bottle.  The only thing she needs work on is when she gets upset.  Lucy has one level right now and that level is crazy.  She goes nuts!!!!  Whether she's hungry, needs a diaper change or is in pain.  I mean she even cries after she sneezes.  We are hoping the sneezes don't continue to scare her.  Yesterday we caught Lucy smiling in her sleep.  It was precious and hilarious at the same time.  Dad was able to capture on camera.  It's a little creepy on film... but here's one while she was sleeping.

Then I was able to get one while she was awake.

Last Wednesday we had our care conference.  This is where the parents meet with the entire care team (Doctors, therapists, nurses, chaplain, respiratory and nurse practitioner) to discuss her case.  The cardiologist went through what has happened so far and the progress she has made.  Next we talked about the next steps for Lucy.  And this is the sucker punch to the gut......the doctors have decided that Lucy should stay in the hospital until she has the Norwood procedure.  Yes, we know, we thought there would be a break from the hospital for at least a month,  We are sad that Lucy will need to spend more weeks in the hospital but we know this next surgery is getting us one step closer to being home for good.  The plan is to look to schedule the surgery in two to three weeks (if we've learned anything from this process, it's we never get a definite answer until it's almost happening).  Average recovery from the Norwood is two weeks, which puts us in the hospital another five weeks at the least.  Ugh! Until then we will work to get Lucy as big as can be, work on her eating and helping her to learn to cope better.

Please pray for Lucy's continued progress and our peace and patience as we continue to commute to the hospital and get limited time with our daughter.