On the eating front

Clara has been having some trouble with her eating. She has been mostly on an NG tube and was getting scheduled feeds of Brooke's milk.  Unfortunately though Brooke's frozen supply ran short this week and the doctors wanted to add formula into the mix to help her get the calories that she needs. The big concern is that Clara has to burn a lot of calories just dealing with the effects of the chemo, not to mention her caloric need to sustain regular growth.

So the night that they started the formula, she was already a little swollen again (this is what sent us to the PICU last time). She continued to get more fluid overloaded that night and the next day she looked particularly hefty. Of course, we didn't want to keep feeding her because she looked like her stomach was going to pop. She seemed really uncomfortable and was laying down with her belly arched out all day. Until finally she peed. She peed ~120grams in about 10 minutes. That is 2% of her body weight, which for your typical 150lb person is 3lbs of pee (this is really an unrealistic extrapolation).

Right around this time they decided to take out her NG and see if she could continue to gain weight without the forced feeds. Of course, she lost some weight from the fluid overload and also lost some weight because she needed to remember how to breast feed. She also was about 12 hours late yesterday for her red blood cell transfusion so she ended up sleeping all day without eating. All in all she lost about .1kg over 2 days so the doctors want to put her back on the NG tonight. Brooke is upset over this (even though she knows it is necessary) because feeding is one of the few things that she and Clara have control over.

Finally on the feeding story, Clara is ready to start solid foods. Her throat and mouth are mostly recovered from the last round of chemo so swallowing should be less painful now. We were hoping to do it without the NG tube, but will have to deal with that discomfort still. Hopefully we will have a post soon with her first attempt.

And finally, a picture from right now as I type this out in the atrium of the hospital! Brooke and Debbie (Brooke's mom) are looking at the camera, but Clara is smiling at her daddy!