Day +39

Alas I am getting signs that maybe I am not totally crazy... as I have been surveying nurses and other mothers about my theory on a feeding tube for Georgia I am surprised that I am yet to hear a vote for it. Georgia's eating progress is slow, painfully slow but she is eating. My points are these:
- Developmentally she is still learning about being hungry, how to eat and how to feed herself all of which would be derailed by a feeding tube. I have heard from numerous people that even their kids of half nutrition don't feel hungry enough to eat.
- We are done with chemo and what has made her appetite nil, it will be a slow road back but once you're on an NG tube is is a slow road to get hunger started again... let's just stay the course now instead of essentially pausing the current situation for a few months.
- She is actually eating, not enough calories to sustain herself so why not send us home on partial TPN (IV nutrition) the plan that is currently working.
- The attending had some concerns about her line being accessed at home with the TPN but she has to be on overnight hydration anyway so I don't see where there is additional concern.
This morning during rounds our nurse chatted with the nurse practitioner while I was talking with the doctor, she said she thought this was getting ridiculous and she couldn't see why we weren't being sent home on TPN. She agreed, I later found out that the charge nurse and several others agree as well. Tomorrow the normal work week resumes which means the dietitian will be back, I am hoping that a talk with her will get everyone on the same page and get us the okay to go home!
Home will be stressful in and of itself, there will be a lot more work for me to do but I will also be able to resume some of my abilities as a mom. Last night when the nursing shift changed our new nurse came in, we'd only had her once before and she is fairly new... she looked at me and said "you guys are still here!" Uh, not the best opening line for how exhausted and over it I was feeling. Georgia fell asleep early and I thought I would finally have a couple of hours to myself to eat and catch up on email, not so fast, the nurse came in and woke her up during vitals moments later. Although very apologetic I was hardly in the mood to tell her it was no big deal... instead I just looked at her, gave a half smile and went back to shushing Georgia. No luck, she was up so we headed out into the halls to see some of our friends. Georgia loves riding on her "lily pad" which is a painted wooden board that sits over the top of her IV pole wheels, she sits so proud holding on for her ride. We headed down on hall and met a new resident, not only to the SCCA but to the world, this little boy was 44 hours old - again I asked myself how can all of this be happening to such small innocent souls. As we continued on we talked with our friend who has six month old twins, another mom whose 13 year old just had a transplant and caught up with our favorite night nurses. As I was chatting Georgia wiggled her way to one side of her lily pad and before I could catch her fell off... I believe she hit her side first but when I saw her she was face down and instantly hysterical. I scooped her up and headed back to our room... the fall was approximately 2-3 inches from the ground, there were no marks and as we walked away she was waving through her tears. This was one of those moments that all moms have, the ones where you think, well there goes my vote for mother of the year... but when you live in a hospital those little falls come with vital checks, a call to the night doctor and a report - this is where I lost it. A nurse who has become a friend came in to see if we were all alright and I tried but failed at choking back my tears, I am ready to be done with this, I am ready to go home, I want to be able to be Georgia's mom and not have every calorie counted, every diaper weighed, every bump reported on.