Showing posts from December, 2011

Community of Love

We have been very open and public about our journey through our pregnancy with our son Kyle (Oct 24 - Nov 8, 2011).  His life has not only affected us as a family, but our extended family, friends, acquaintances, doctors, hospital staff, and many people who I have never even met.  Not only did it affect these people, but his life created a lot of conversation right from the very beginning.  Some people didn't understand why I didn't abort immediately after finding out he was affected.  Others were incredibly hopeful for the medical treatment of a liver transplant that was available this time, that wasn't a possibility eight years ago when we went through this before.  After his death, many have struggled with the "How could this happen," either from a medical or theological perspective, or both.  Awareness about urea cycle disorders and awareness about organ donation have occurred.  A new study on hepatocyte transplant (injection of healthy liver cells) will be

The Last Few Days Nov 6-8 and Beyond

In memory of our baby Kyle: Oct 24, 2011 - Nov 8, 2011.  We had 15 days with him.  This is a summary of the last few days. If you havn't read my recap of Week One , or the recap of Week Two , read them first. We spent the day at Sick Kids on Sunday, including our daughter.  The nurse that day was the same nurse who was there the very first day Kyle was born and brought over from Mount Sinai.  She arranged to have Natasha be able to be let in to see Kyle since she wasn't officially allowed to on the PICU floor since she was under 12.  I'm very thankful she did this. This was the last day that he was responsive at all...he would still grip your finger if you put it into his hand. They did neurological tests on Monday and Tuesday.  MRI, ECG, and a special type of ECG where they put goggles on and flash lights, do hearing testing as well as physical testing and all of them showed absolutely no response to stimuli of any form.  We made the decision to let him go, an