>> Saturday, September 26, 2009
Well, we are ALMOST done here in Gainesville...or Gator Nation, as the college football worshipping folks call it (which is everyone). Woopee!
He is doing good! Max has fully recovered from his Nissen fundo/Gtube/circ surgery marathon, and has been working on getting to "full feeds". This would be about 60-70mL's, or 3 ounces of milk. He has not been very into eating, so that was a surprise. Oral aversion is fairly typical for these kids, but for some reason I didn't think he'd go there. Loving your pacifier is one thing, having to drink from one is another. Max gets an average of 20mL/1oz down before a few things happen. He pushes his tongue out so you can't get the nipple back into his mouth, or he purses his lips and bears down. Both are very funny because he has the grrrumpiest baby face I think I've ever seen. It's a glare, in fact. If those ploys don't work, and Mom and Dad or the Nurse are still forcing that bottle on him he "plays possum", as one of our nurses said. The boy just goes limp and pretends to be asleep. BUT. He will peek at you, just to check. Also, if you put him in his crib, he's wide awake again. It's kinda adorable, but we can't let that win over. It's a balance between not forcing so much that he gets exhausted, or starts gagging (which is easy to do because of his surgery). That could cause more oral aversion. So, as of now, Max eats his one ounce or so, and the rest goes through his G-tube. I tell you what...without that tube we would be here several more months. Whew... Here's a few cute pics from tonight. However, I apologize because it's dark in the NI sometimes, and he was out cold! Didn't make for much of a GQ Baby photo op.
Even though Max is not eating all on his own, he has been gaining a little bit of weight every night, so he is meeting requirements for discharge. :) We will do some occupational therapy at home, and just work with him! The sides of his canulas are sort of "super taped", because he yanks those puppies off any chance he gets. I would too!
Otherwise...we are all set! Max has to get his Synagis shots, which protect from RSV. They're usually only prescribed for kids with congenital heart disease, but Max is "weak" enough to warrant them. Also, Max will go home on oxygen, just so he doesn't have to work hard for air while he transitions. So the shots, and that's all folks! We should be getting discharged Tuesday or Wednesday...which is SOON. I'm so glad it's finally here.
Today, we got to do the coolest thing! One of our nurses, who's on the flight crew, stopped by to chat with us for a minute. She took care of Max a bunch when he was in NI3. Anyways, she offered to take us to the ROOF of Shands, to see the heli-pad!! Suhhh-weet!!
(Jordan's going to HATE me for accidentally left justifying these pics...haha)
Jordan is definitely standing on the edge of the roof...with a ledge under him that goes MAYBE another five feet. Sandy the nurse doesn't seem to mind, either! But I very humbly sacrificed going close to the edge of a 12 story building to be the photography. I'm a giver, what can I say.
Here's me! Again, safely in the center of the heli-pad! :) You can see all the way to The Swamp (Griffin Stadium-really!) behind that red brick building. It was a WAY cool experience for us, we really appreciated the treat! I don't think I'll be joining flight crew soon...but I think Jordan is going to be sneaking back up there soon.
Tonight we went to a friend's house to watch the game, and the Gators kicked booty! :)
Here's the guys, deep in football world...
And here's me...apparently encroaching upon Jesse the dog's couch...
Actually she is such a sweet dog; she just had her eight birthday! Really, I was sitting in "her" spot though, so she just leaped right up and snuggled onto me right away. It was pretty cute.
I don't have much more interesting to say...other than two glasses of wine after NO alcohol since December makes a certain girl headachy! I wont name any names...
Here's Max's crib in the NI, with a sheet over it to block lighting changes, etc. (the lights are always fading up and down when the nurses are working/writing or not.) It's his fort!
Love you all! We are quickly approaching normalcy!! :)