They try to clear out the hospital before holidays so families can be together. I noticed more sad faces than usual at the hospital yesterday. Maybe the tears were a product of all the new admits. Sometimes I get the desire to comfort some of these people, but I always remember that you can never presume anything about anyone or their situation. Sometimes I feel so strong - as if I'm in my own element, playing the role of the parent who is used to life in the ICU. I was feeling that way yesterday... until we had a meeting with a few members of Norah's care team.
We had a preliminary meeting before we had her full care team there to discuss our short term and long term plans for her care and stay at the hospital. We were presented with a heavy reality.
Norah won't likely come home for another year, or even longer. Though we all hope for the best, and they do what they can to prevent it, there is still a chance Norah could have an event similar to that which happened last Monday. As difficult as it is to swallow, Norah could still die in the ICU.
I wasn't able to hold back the tears when the doctor said that.
They are going to reach out nationally to find other cases of babies with skeletal dysplasias that needed to be trach'd so early in life. They want to get a better handle on Norah's possible prognosis as well as any possible treatments that they haven't though of. Norah is an extra special case. They haven't had any other patient like her - not only because of her physical challenges, but also because of her sweetness and amazing level of interaction with everyone. Though they may find cases "like" hers, I wouldn't be surprised if she's in a one-of-a-kind situation. Even after genetic testing, they still don't know what sub-type of spondylometaphyseal displasia she has. I vote for naming it after our family if they officially recognize this sub-type as our own.
After the meeting, I was pretty sad. Jeff reminded me that when he was born, his mom was told that Jeff would likely be a "vegetable". They couldn't have been more wrong. The reminder helped me feel a bit better, but I was still feeling low. I said to Jeff "What if...." and couldn't finish the thought. He said the most comforting thing to me. "With Norah, there is no 'what if'. There is only 'right now'." And that is how I'm going to try to live.
I was expecting a really difficult Christmas. Our plans were to visit Norah on the morning of Christmas Eve (photo left), then go up to Logan to get new tires (thanks Mark and Carol!), then take Gunnell family photos before the annual family party. We were then going to drive all the way back home so we could have Christmas morning at home before doing a second Christmas morning at the hospital with Norah.
It was difficult to leave the party so early in the evening. We typically spend the night in Logan on Christmas Eve, but we had to slip out so we would be able to get an early start the next day. Harper had a great time opening his gifts. This is the first year he's really understood the concept of gift opening. He's been asking for Woody and Buzz, and that's exactly what Santa left under our tree.
This week, Jeff and I wanted to show a little gratitude to the staff at PCMC, so we decided to bake a big pile of goodies for the staff at the PICU. They take incredible care of Norah, work long hours, and make a big difference in our quality of life. Yesterday, I was sitting in Emily's kitchen with Shelly and Emily. We were wrapping up the last of the treats when I began to feel a little Christmas cheer. I didn't know it yet, but that was the start if a big turnaround for me.
You've given us more than cash at a time when we need it most. You've given us more than a gift at Christmas when our family is in a difficult situation. You've seen the love and hope that our family has, and grown it exponentially with your anonymity and thoughtfulness. We're so grateful that we have so much love and warmth in our lives, and we are grateful for you. Thank you for your good deed, your selflessness, and for filling me with holiday cheer in a way that I've never known before.
When I was 18 years old I was eager to set out into the world. I knew I needed to get out of the San Francisco Bay Area's economy or I'd never get ahead. I moved to Phoenix with the bravery of someone with nothing to lose. Absence (and distance) indeed makes the heart grow fonder. I became closer to my family than I ever would have imagined. As a result, I miss them like crazy.
