Rosie's Journey

October 26, 2010, we were blessed with a beautiful baby girl. But she had challenges. Born with a bladder 10x normal size (from a cyst or ureterocele blocking her bladder outlet), she needed help breathing at first. Her lungs couldn't properly expand with a belly so distended. And her kidneys had been under quite a bit of stress. She went into kidney failure.

But she got better.

And better.

Until her kidney function came back to normal! But her bladder function didn't return as quickly. While she was in the NICU and only 2 days old, Dr. Copp (UCSF) decompressed the ureterocele which was keeping her from peeing on her own. So the ureterocele wasn't nearly as obstructive, but still attached to the inside of her bladder. She was peeing (yay!), but not consistently. And she still had reflux from her bladder to her kidneys which isn't normal and puts the kidneys at a constant risk of infection.

So, we took very good care of her and we waited for her to grow. And then on December 7, 2011, she had surgery. Dr. Cartwright worked on her for nine hours. She had a tough time in recovery.

Two days post-op, she was really getting sick. She was very bloated and lethargic and her kidneys were failing again. She lay in bed and did nothing but blink through her swollen eyelids. We were really scared. The doctors did an ultrasound that showed both of her kidneys were backed up. Swelling in the ureters was causing a big problem.

So tubes were put directly into her back to drain the kidneys. She got better almost immediately. The next day she smiled, stood up, played for the first time in 3 days.

Two days after the nephrostomy tubes were put in, her kidney function went all the way back to normal again. We were very relieved. She got to come home.

A month after her surgery, the tests were showing drainage only on the right side. Her right tube was capped and she did well. Now that urine was filling the bladder we became aware that she was peeing more consistently. We began to cath her less. A bonus!

It was looking like a stent would be required for the left. Another procedure. But, at the last minute we got a second opinion from another urologist who suggested that Dr. Cartwright try a different kind of test. She agreed and this more sophisticated test showed everything was actually draining very well, on both sides. No stents were needed! Both tubes were capped.

Two days later, she was still doing very well. Her tubes were pulled. Hallelujah! Free at last.