Better

Emily is slooowly getting better. She is tolerating her feedings well on the new formula and schedule. She was more like herself yesterday, and today we actually took a little walk off the unit. She is weak, and it will take some time, but she seems to be turning around.

She had her first weight gain today. Thank you God!! She lost 6 1/2 pounds total. She was 68 pounds 4 weeks ago, and yesterday 61.4. It is so hard to see her so thin. Her little bones poke out and she needs to be turned constantly to keep her from getting too red.

The good news is she's better. We still have several things that need to happen for her to go home.
-she has to tolerate water added to her feedings instead of IV fluids to supplement. This raises the rate, which I think she'll handle fine, but we'll see.
-she needs to recover from infection and have normal poops :). This is very important because she losing lots of fluids, and not absorbing as well with that going on.
-she's draining a lot off her g-tube which needs to be replaced with flushes in her j-tube. We haven't even started to deal with that yet.
-they started lipids (IV fat supplement) to help with weight gain. She has to come off them, probably next week, and then maintain weight.
- she needs to consistently look better without big swings in her blood pressure and temperature.

Overall, these are very doable goals! They just take time. They take up our summer time :/ I'm still unhappy about it, but resigned to the idea now. If everything goes perfectly, she will go home next week some time. I originally thought Monday, but they extended the lipids through the weekend, so no. I think Wednesday is the earliest we could go.

Here is Emily looking happy, but with a bazillion things on her IV pole~
They gave her that blanket here. She loves it. Those wild colors make her happy! I don't. That makes her love it even more :)