So just got back from x-ray... Waiting on someone to read them. I already know what they'll find. She's full of poop. The end.
I don't need an X-ray to tell me that. I'm so frustrated, my girl hasn't slept all day and is in pain. I've finally gotten her feeds shut off so at least the pressure has stopped building. She hasn't pooped since 7am. Her veins look like a roadmap on her belly, black and popping.
GI has said they agree with my theory, surgery wants to wait until tomorrow morning's CHIRP (ChildHood Intestinal Rehabilitation Program) meeting to discuss, we're under surgery's umbrella- they have final say. That's all great and good except I'm the one who gets to console a distended miserable baby. She's vomiting and burping bile every few minutes. No sleep for me tonight and so much for my mental health break in the morning (volunteer cuddler comes 8-12).
I'm going to lose it if they try to sell me my own ideas tomorrow. I may not be a doctor but I'm pretty good at math: 11mls/hr in for 15 hours and ZERO out seems to be an imbalance to me. Then again, I'm not a doctor. #frustrated

Stones, oils, prayers

Being from the holistic background I've begun to employ some other alternative healing methods as well. I've been using moonstone and blue topaz as well as essential oils and energy healing to help improve Dylan's digestion and absorption. Of course this is received negatively and everyone here thinks I'm a lunatic.
The fact that Dylan's liver enzymes are "phenomenal" and that when they expected her liver to suffer after sepsis and her numbers barely budged, that her bowel not only improved in health, but also grew, no, nearly doubled in length (which is practically unheard of) are all being chalked up to "luck of the draw".  I just smile and nod. Sure, it's luck.
They say we'll be home around march-June. I'm working my darnedest to get us home by Christmas. The fact that we have hundreds of people focusing their prayers on us I'm sure has worked miracles.
Nay-Sayers say nay, but she's my baby and therefore I will continue. I really wish more people were open to the possibilities of combining western and eastern medicine to compliment each other's therapy plans.

Transferred from FB

Seems it's time to move into a blog. I know, I know. You've all been saying this for months. You were right. Happy?  When have I ever listened to you before? I have to find my own way. Some of my posts have been deleted by the powers that be (yes, they contained profanity but it was as tasteful as profanity gets!) and I did not have backup copies of most of them. I didn't think that mattered to me at the time of writing them but as I've been laying here the last hour I've come to realize that someday this might mean something more to me or even to her (Dylan) and I should probably* do my best to archive my thoughts. Unfortunately this means some of what I wrote is gone forever (Some posts were written on a whim from my phone, straight onto FB... Like this one now). Perhaps these lost posts will join forces with my lost colostrum and they will do great things together: passion and colostrum, one unstoppable duo. Ahem* anyway... If, for some reason, you have a copy of something I've posted that has been deleted, please let me know. Thanks. I'll set up a proper blog and begin transferring posts over one by one as I can - a lot need to be transcribed because I can't copy/paste from here. I'll let ya'll know when the boxes are unpacked and you can come take a tour.  Big love, xxx ~D

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.