Saturday, January 4, 2014


So, Lucy has kept all four of her feeds down for two days in a row so far. For the first days, she kept throwing up at least one whole feed which is an 8 oz box of formula, but after tweaking it, and getting tips from the home nurse who has been visiting since we got home, we have figured out how to get everything in her without it coming back out. It is still very time-consuming, but should get better and quicker as her belly adjusts to being full again. She seems okay with it all. She just takes it in stride, just like everything else that has happened to her so far in her short little life. Here is Lu demonstrating business as usual, having her regular early morning nap, just with a feeding pump pumping formula into her stomach:

Lu has been having a little bit to eat by mouth each day too, just not too much on top of her formula because that would probably be too much at this point. It's basically going fine, I just have fluctuated through many feelings over the past week. The most common one being rage over the fact that Lu has to put up with this. But I also have experienced quite a bit of anxiety just over the medicalness of it all. 

At the addition of each new piece of equipment, therapy, adaptive device, etc., I tend to also take it in stride, but I had a very difficult time this summer when I started puréeing her food. I have always had more of an emotional/ obsessive reaction to Lu's eating because it just has never really gone too smoothly and I have always been trying to be in control of it, while never actually achieving control.  "Medical" stuff kinda freaks me out. I have given people enemas, cathed people, and even once changed a man's iliostomy bag that was leaking, but if have never felt comfortable with things that have a more medical nature to them. But I am doing ok. Chad has been the real champion and leader of this whole thing. He has some sort of inexplicable confidence about it all and just dove in when we were at the hospital and were learning what to do. I have told him how awesome he has been through this all, over and over. We make a good team that is for sure. 

Here is a picture of Lu from New Year's Day:

I want to keep a picture log to compare how she looks as she hopefully gains some weight so we can visually measure her progress, in addition to just weighing her of course. So, here she is on the first day of the new year. 

We are looking forward to improved health, weight gain, and more energy! 

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