Monday evening

We had a nice weekend here with no doctors appointments! :) Valerie and Kira were in town to help out, and they got to go to the zoo with us! Unfortunately, a lot of the exhibits are closed due to the weather (we knew it would be that way, but figured it was worth a try), but we did get to see some giraffes, elephants, lions, and monkeys, in addition to the birds and reptiles that are normally inside anyway. They also have a very cool manatee exhibit with a mama and baby in it. We did have to be careful to keep Emma Kate's toooobs warm so we weren't running ice-cold fluids into her. It was a pretty decent weather day but still pretty chilly! It was great to have Valerie and Kira stay for a few days, and really appreciate the help!

Today was our GI consult appointment, and it was very time consuming. There are multiple people included to cover different aspects of care, and we spent a lot of time talking to each of them. Basically we established an understanding that TPN/lipids does indeed knock out appetite since it provides all necessary nutrients so the body does not feel the need to take anything more in. (We had been told SPECIFICALLY the opposite a few times, and it just didn't make sense to us...) So the next batch is going to be made up with 20% fewer calories in it and they are playing around with the glucose measurements to see if they can provide her a bigger window off the stuff. It's just very cumbersome and limiting to have to have one person specifically designated to carrying the pack and following Emma Kate around on what is essentially a 5 foot long leash. Dr. Putnam expects that recovery to fully eating and drinking capacity is likely to take several months (he was talking about maybe 6-12 months) and in the mean time he believes she is highly likely to need *some* sort of nutritional and fluid support. If she seems to be making leaps and bounds of improvement, then she might only need the TPN/lipids for short-term help, and we might be set with what we have. If she is to be on TPN/lipids longer-term, she will need a central catheter in place rather than her PICC line apparently. If there doesn't appear to be any intestinal issues and her gut is working fine (which it seems to be), and we're looking at long-term support, we might consider having a G-J tube surgically placed so that we can provide feedings through her digestive tract for support instead of IV (which over time takes a serious toll on the liver). Naturally, we just want her to get better and back to normal fast, so its hopefully not going to come to either one of these as a necessity! It just baffles me as to how they expected us to get her to eat anything and re-learn how to swallow liquids if she's not going to want anything while she's being covered by the TPN/lipids... that just seems silly. I mean, we're 3 weeks out here and have been struggling for each and every day of it! How are we supposed to make improvements?!?! Argh.

Mimi and PopPop drove into town to help for a couple weeks to allow Daddy to go back home and back to work. Emma Kate was excited to hear they had arrived, and seemed very anxious to show them right off to the playroom... too bad it was already bathtime! :)