One Year...

One year ago today Charlie Claire went for a routine neurology appointment.  Jason and I were under the impression that Charlie had been seizure free since coming home from the NICU because she had not had any apnea events, which is how her seizures first presented themselves. After talking to the neurologist we went over to the CHKD main hospital for an EEG. Jackson and my mom were in the waiting room with me, Jason had already left for work. The nurse called us back and said one of the Dr's wanted to talk to me. I just knew at that moment something wasn't right. My mom and I walked into the "reading room" where the Dr was looking at C's EEG. He broke the news to us that Charlie Claire was having seizures. A LOT of them. However, she wasn't showing any clinical signs when she was having them so none of us had any clue until the EEG. They wanted to try some medication adjustments but since C wasn't showing any clinical signs the only way to know if the medication adjustments were working was to keep her hooked up to the video EEG.  In order to do this they had to admit Charlie Claire to the PICU. Cue, Mama Bear MELTDOWN.

During this few day hospital stay we learned that Charlie Cakes
- was having about 72-ish seizures a day
- that she did not respond to any of the 4 medications they tried during this stay
- she only responded to an increased dose of phenobarb but that alone did not control her seizures
- she was going to need brain surgery

We were grateful on one hand that CHKD was so proactive and we knew very early on that C was going to need to have surgery. At the same time when you hear that your 7 week old baby is going to need to have brain surgery when she is 4-6 months old to remove "bad" brain tissue in hopes of seizure freedom you sort of feel like a bus just hit you. 

Thankfully, Dr. Toor, Dr. White and the AWESOME EEG techs at CHKD took super good care of our girl and were super helpful at explaining to us what was going on and how it needed to be handled.

Ironically, Charlie Claire was discharged from the PICU on December 7, 2010...the same day one year later that she will be having her second resection surgery. We were beyond excited to bring our sweet baby girl home from the PICU that day last year and we are hopeful that December 7, 2011 will be an anniversary we will be celebrating for years to come!!

Sweet Charlie Claire Bear

Feeding time with Daddy!

Relieved after finding out we were getting discharged!