Hi M.,
I'm so sorry to hear that your little one is going through this. When I was pregnant w/ my daughter they did an ultra sound at 23 weeks and found she had an enlarged kidney. They monitored the rest of my pregnancy and when she was born they immediately put her on antibiotics so she wouldn't get any kidney infections. We live in CT and there are no pediatric urologists in our area. They sent us to Dr. Israel Franco in Westchester county New York, he's the best. She had her first VCUG at 4 weeks old (it was miserable) and all the other tests that go with it. They continued to monitor her and finally at 20 months she had to have surgery. In her case, her ureter didn't go into her bladder. They had to reconstruct it and put it in her bladder. The surgery was done at the Children's Hospital at Westchester, they were wonderful. I don't know the cause of what is going on w/ your daughter, but I would suggest if you are in the area try to see Dr. Franco. I have 5 other friend's kids (here in CT and one in NJ) who also see Dr. Franco b/c he is so excellent at what he does. I really hope they find out what's causing this problem for your daughter. Oh, my daughter is now 4 years old and completely cured.
Good luck,
Alexis