Getting ready for surgery, hopefully?

As Eliza closes in on the magic number of 2.2 kilos (she's at 2.195 tonight!), that means it's almost time for her surgery to repair her ostomy... or so we hope. We've had a heck of a time trying to pin down the surgeon to actually meet with us and put her on the schedule; it's like he doesn't actually want to operate on her. One of the nurses told us this is pretty common - they try to stall as long as possible so the baby can keep growing, making the surgery easier. Understandable but frustrating - this is the milestone we were given to aim for (after the previous milestone of 2 kilos...), and the surgery is the single biggest thing standing between her and coming home.

Plus, it's more and more clear every day that this should be done SOON. Her PICC line (required since she isn't getting enough nutrition from her digestive system, more on that later) was probably the cause of her recent infection, and is always a risk for introducing another one. The IV nutrition from the PICC is hard on her liver, though she's handling it well so far as we know. Her stomas are continuing to be more prolapsed and more swollen every day, and are starting to get eroded and lacerated from rubbing up against her ostomy bag.

In short, she's reached the point where we (and all of her care team) agree that it's better for her to get the surgery NOW rather than to keep waiting. If only we could get the surgeon to agree! We've tried to meet with him the last two days with no luck (though yesterday he did stop by after we'd already left for the night) - here's hoping tomorrow's the charm!

We did get one step closer today - they did a barium trace to confirm whether the "downstream" parts of her bowels are in good shape to start being used once they reconnect her. The results look good - everything seems to be in good working order - but they also confirmed something we'd been suspecting. Her ostomy is not nearly as far down the line as they'd been telling us; she has a significant amount of small intestine downstream from the ostomy that is therefore not currently available to aid in digestion. This is good news, since it explains why she's been dumping rather than digesting efficiently, and why she hasn't ever been able to gain weight well from purely oral feeding, but it's a bit frustrating too that we've been mistaken for the last four months. Still, it's a good sign that she should be able to do much better once she has the surgery.

Here she is twiddling her thumbs - she can't wait either!