Wednesday Evening

Janie Grace continues to make some good progress. She's now completely unhooked from everything except her IV. This allows us to hold her with greater ease and we were even able to walk the halls a bit this evening as she was clearly sick of being in bed on her back.

Beginning this morning, Janie received a half-ounce of pedia-lyte through the new tube all at once. 3 hours later she received a half-ounce of formula. (By the way, Jennifer has reluctantly given up pumping as all hope of one-day nursing JG has been lost. I must say that 8 months of pumping is to be commended. Jennifer's been a champ.) 3 hours later she got an ounce, then 1.5 ounces and a few minutes ago she got 2 ounces. Essentially, the liquid goes immediately into her stomach. We pour the formula into a syringe and slowly let gravity do its thing.

We didn't know that we'd jump to this style of feeding so quickly. If she can handle it (as she's done so far), our days with the feeding pump may be done which would translate to some freedom for all of us that we haven't known since January! As I understand it, we need to work towards 6 feedings of 3 oz a piece. Beginning tomorrow, we'll once again offer food to her by mouth first and then use the tube for the balance. We'll also continue feeding her baby food as was started in recent weeks. I'm sure we'll ease back into that. Her stomach needs to be stretched as she's not accustom to so much volume over a short period of time.

Please pray she'd be able to do a good ol' #2 tonight or early tomorrow morning. She needs one of those before she can be shown the door. That's always a challenge for her anyway and the morphine doesn't help.

For the most part, she's been her rather content self. This afternoon, the experiment of pulling back on pain medicine clearly back-fired as she was quite uncomfortable for 30-45 minutes. The surgical stitches that hold the G-tube in place were removed. By the way, for those familiar with G-tubes we went right to what is called a "button". We've been given our first tutorial on cleaning, venting and feeding. We've both taken turns administering the past few feedings and are beginning to get the hang of it.

She didn't sleep very much at all today. Although it is very difficult with the all the activity in and out of the room. She finally fell asleep around 8:45 this evening.

We had the pleasure of a visit from Jacob and Jensen this afternoon. They got to see Janie, play in the Ronald McDonald House playroom here on the 8th floor and up at the rooftop park. We're so fortunate that Donna (Jennifer's mom) is able and willing to basically drop most everything and care for the kids during these hospitalizations. It allows us to be with Janie and have no concern for their well-being while we're away from them.

I've included a picture below of her belly showing her new arrangement. The band-aid on her belly button is due to the surgeon actually using that as the entry point for the surgery. (Don't ask me to explain anything else about how this thing got installed.)