Still here

Emily is still i the hospital, but doing alright. She has lost weight for a few days and can't leave until she gains. I hope she gains tomorrow, but she may need to gain a few days.

She is so thin. All of her bones poke out. It's not nice, but she is off all IV support, so I'm not sure they can do anything here that we can't at home. We just have to be very, very careful.

I'm still so bummed our summer is going so wrong. My mom, sister, and nieces were supposed to visit this week, but decided to stay home because we don't know how long Em will be in he hospital. I feel like everything we had planned just keeps slipping away. I'm having a bit of a pity party tonight.

It will take a long time to make up this severe weight loss for Emily, so back to medical land we go. Continuous feeds, fluid replacements, blood work, blah, blah, blah.

Emily has been extremely cranky the last 24 hours. It's wearing me down. She's so fussy and difficult to handle because she's thin. I have to be careful with how I hold her and how she lays. They also started her on canola oil, which I think is the problem. They were trying to replace the IV fats, so they are putting straight up oil in her tube. So. Gross. I thinks 40cc's of oil a day directly in her intestines is cramping her belly. Her fussiness seems to run In wave, which leads me to believe its some sort of gas pain. I refused it tonight. We'll see if she's better without it.

Overall, she still good, but not quite good enough to go home. This feels like a recurrent theme for me.

I'm going to bed, and hoping for a better day tomorrow :)