News and Pictures

Our sweet Kaylie bug. She had had the breathing tube in for so long that it had given her a scab on her upper lip and her mouth wouldn't close all the way. She looks so beautiful and peaceful here, though. It took 45 minutes for Kaylie's heart to stop after removing the breathing tube, but we both felt her spirit leave long before.

We recieved the rest of the pictures from Now I Lay Me Down to Sleep and I thought I would post a few of my favorites. This is a wonderful service provided to families free of charge for children who have passed away or are going to after removal of life support, like Kaylie. The photographer came at 10:00pm to take these pictures for us and I will be forever grateful for the images she captured during Kaylie's last moments with us.

Her poor little feet were poked so many times. Her feet were so long and skinny, Robert's mom said she didn't have enough room for five toes, which is why they were all "jankity" (according to Aunt Candace). Her right toes were all squished up with two below and three on top and her fourth left toe was turned down and underneath all the others.

The picture of Kaylie holding Robert's finger is the best, but I like this one of me holding her hand in mine, too.

The nametag Candace made for Kaylie's bed while at Primary Children's Hospital. The warmer kept melting the glue, so we had to tape everything back on.

While in Utah, I also met with Kaylie's neonatologist to go over her liver biopsy and autopsy results. Again, we are left with no concrete answers and several major things ruled out. They believe that her genetic condition may have been the cause of the liver damage, ending in liver failure but because 50% of all infant liver failure cases never have a cause, they cannot say that with certainty. Kaylie's genetic condition was this: her #1 chromosome had a section that was missing and another section right next to it that was duplicated. Specialists have seen these in other people, but never both together in the same person, so it is difficult to know what that would have meant for Kaylie. So now the plan is we are having my genetics looked at to see if I have the same abnormality as Kaylie and if mine are fine, then we will look at Robert's. If his are fine, too, then this was just a fluke and we have very little chance of this happening again. If one of us has the same abnormality, then there is a 50% chance of having another child with the same condition. We don't know if that means that every child that has this will die just like Kaylie, though, so it is just a waiting game to see what the results tell us. Each set of testing takes weeks to come back, which is agonizing, but well worth the wait to at least be prepared with each pregnancy rather than being caught completely off guard again.