Prepared for battle...

The next time I write this blog, I plan to be naked, sitting in a bean bag chair eating cheetos! Ok, not really but we will be home and I more than likely will be in my robe...because who needs clothes when you're home?!

WE'RE GOING HOME. HOME!!! Like, tomorrow!

Six weeks, four days. Whew. I woke up this morning tired but prepared for battle. Bruce hasn't been eating well this past week and a half and it is really the only thing holding him up for discharge. It's not easy to make a three month old drink a bottle he would rather pitch it out the fifth story window and it's not like I can threaten him...'if you don't drink this bottle, no sweet-ease for you, son!' (Sweet-ease :: sugar water for babies you can dip their pacifiers in...aka, 'baby crack'. And as John found out the hard way, it cannot be recreated with Splenda). Besides, those threats wouldn't work in a children's hospital anyways....as soon as moms leave, the nurses let them have whatever they want! For Bruce, it's being held and hanging out at the nurses' station. But back to the battle.

There are several theories why he's not eating. Momma's is that his belly gets pumped full of a variety of meds everyday and quite honestly, his formula is gross. I can't blame the kid and he's been through a lot the last several weeks. Last week they placed a ng tube for his feedings. Bruce gets first chance to take what he can manage out of the bottle before his belly gets upset and he gets cranky, then the rest goes down the hatch in a small tube in his nose. Bruce hates them and that's why there's more tape on his face to hold it in place than one of John's attempts to wrap a Christmas present.

Come to find out, it is very common to send kids home with ng tubes who do have issues eating and getting back on their feet. But our docs weren't having it. We were staying put. This time yesterday, I thought our current attending was a puffed up peacock with too many ruffles in his feathers so I kept my mouth shut and waited patiently for John to leave for the ranch for a couple days so I could do some investigating. With a little help on the inside from one of the patient advocates who was assigned to Bruce's case in the very beginning, back in the nicu days, and I have had the wonderful pleasure of many a deep conversations on life and it's craziness, communication was restored and the docs were finally on the same page as us: We really don't want to live here forever. And compared to taking a baby home with a picc line, a feeding tube is small fish.
But I say that now....just wait til he pulls it out himself and we have to place it back in and he's screaming baby obscenities at me!

So, my battle preparation this morning, complete with warpaint (really just my makeup because I could use all the help I can get), was for nothing now that doctors know we feel confident we can manage with the equipment. And that we are capable of doing it as parents. And if they knew that we are capable of doing it because we both grew up on dairy farms where it was not uncommon to tube feed calves, well then they'd probably take our baby away for comparing him to a calf.

And that's that! We get to be home this weekend for the holiday, the unofficial celebration of the end of summer that Bruce has spent in a hospital! I'm going to use this to signify the end of his crazy fluke illnesses and a fresh start for our future...we will always be familiar with procedures and doctors and hospitals for his lifelong diagnosis but it's nothing our family can't handle....from home!!!

So now for the real battle.....getting Bruce adjusted to no cute night nurses to cuddle with..............