Where were we? Right. So this distended belly thing. I'm so over it. Just when I think I'm getting a handle on things, learning the parameters, getting my confidence, we're playing a different game. We've seen distention before, never has it been a sign of positive things to come. We're fairly confident that the issues the last few days are a result of a bacterial overgrowth in her intestines (right in her top dilated portion where it's slow going) that was exacerbated by the sugar in the Tylenol. We cycle overgrowth antibiotics on one week increments with every third week being a rest week. Last week was a rest week so she had no overgrowth management. She's now had two days of flagyl and things seem to be returning to "normal". Her stool is back to the farm egg yellow/orange color and her gas seems to have reduced. Her belly girth is still up but we're hopeful.  We've been approved to move up to 8mls an hour (look at us go!) and 3 breast feeds a day, they'll also begin to taper her TPN back this week if she continues to gain weight. I just did the math:
5-6 pumping sessions a day at 20 mins per session plus cleanup and labeling and storage, add 3 breast feeding sessions (add in weighing time and burping) equals 4+ hours of my day devoted to milk and feeding. Lets just say I'm getting good at rocking Dylan with my foot, pumping, eating and internetting/reading all simultaneously. As she's becoming more active and interactive it's beginning to be quite a challenge to keep her entertained in our little hospital room. I'm on constant watch for her pulling out her lines and tubes (she still managed 3 times last week for her NG). It's difficult to let her play on the floor, it's hard and cold even with a blanket. (they don't allow things on the floor, technically) Not to mention when she lays flat she throws up. When she's on her tummy her Broviac is uncomfortable, even wrapped in a yard of gauze. It's also rare when her belly isn't distended so we can attempt tummy time. I worry about her milestones like rolling and crawling because she spends so little time working on these developmental skills.  I miss being able to use the washroom without having to rush. I am so grateful to live in Canada and have the care that we are blessed to have. The estimation is that it costs roughly $5000 a day for us to be here. Her TPN alone is about $1200 per day. It's great to not have to consider these costs when making decisions about her care. I heard that in Japan it's common for people to have to choose between feeding their gastro babies TPN or food for themselves. The majority of gastro babies that need long-term care in Japan don't make it because they don't get the TPN they need (it isn't covered) and they fail to thrive. This just breaks my heart and I can't imagine having to experience that as a parent: watching your baby essentially starve to death because of the structure of the healthcare system.  I know that there are a lot of friends of ours to the south who struggle in similar situations and I feel for them and their families. I am so glad I had the fortune to be born into this great country, Canada. Having said that, there is so much waste in our system. I see full syringes of life-saving lipids being tossed out day after day, half bags of TPN drained into the sink. It's sad. When I see this I daydream that someday, there will be a world where everyone gets what they need. The realist in me realizes that the probability of that is slim to zero.