D-Day!!

D-Day!!  We are being discharged today after nearly three weeks in the hospital.  Monday's esophagram showed a definite improvement; her leak is not entirely closed but it is at least halfway there.  We are back on continuous pump feed, but we managed to ditch the TPN a couple of days ago so that she is 100% back on formula for her nutrition.  Still nothing allowed by mouth, and we need to keep her at continuous feeds (a slow steady trickle of milk into her belly) to minimize reflux so that they can keep the leak site clean.  We'll have another esophagram in two weeks, and a visit with our surgeon next week for follow up.  The biggest remaining hurdle is the lingering inflammation in her chest, which they keep tabs on with blood tests, but it is coming down steadily.  We are still on two heavy duty antibiotics, Meropenum and Diflucan.  The Diflucan can go through her G-tube, but the Meropenum is IV only, so they started to prescribe us Clindamycin so that we could ditch the picc line.  Unfortunately we had a terrible experience with that drug in February (and based on the research I did then, I personally feel it is a very dangerous medication) so I told them I would be willing to go home with the picc if necessary, and in the end they felt that was best.  So I am being trained in how to take care of this line that goes straight to her heart-- sterile methods of care and administering medication.  Did I mention I have four other kids.... no pressure, right?  But if that's what it takes to get us home, bring it! 

Thank you to so many for all of your kind words and visits and help, it has made this-- as much as possible--a wonderful stay.  What a great learning experience, and I've had the opportunity to do and see so many things that I never did while we were in the NICU.   I've visited the Parent Resource Center almost every day for free food and great conversation, met the cute "pet therapy" dog twice, had a sweet visit from music therapy,

attended the Take 20 4 U  twenty minute breathing and relaxation class offered once a week (that always was advertised in the pumping room and during that frenetic time last year those signs made me think, yeah right!), visited the busy behind-the-scenes hospital mail room, and I even made it over once to work out at the JCC gym.  Several sweet visits from friends, two wonderful weekends taking my kids on field trips while my husband stayed with Audrey, lots of playtime with Audrey, wagon rides to the patio, a stranger made her day by giving her a balloon.... so many things.  I still wish we were in Oregon right now visiting family and friends like we were supposed to be, but all in all, we're not doing too shabby.  The big suspense right now is wondering what we will learn from Boston. Will she be a candidate for these outpatient surgeries?  I feel like a little kid waiting for their call-- butterfly city, man!

Now we are waiting for Daddy to come take us home, and Audrey is getting a last nap in.  But not before she discovered that she can reach some cool stuff from her crib.  

....Yep, we're ready.  :-)