The Podge Files: Baby Peter: Days 37-44

by Tracy on Wednesday, November 16, 2011 at 12:16am

November 15, 2011

Happy six week birthday, Peter!

Things are going well. The hospice worker came yesterday and said that Peter is staying the same, his color was good, and said she would wait until Thursday to come again, since he is doing okay. So, that is good news to me. Maybe I am in denial, but something inside me thinks that he will make it to thanksgiving, and even to Christmas, but who knows. It could also just be wishful thinking. :)

The one thing that the hospice worker noticed was that Peter was having small focal seizures with his eyes, where his eyes look back and forth rapidly for a few seconds. This is just another indicator that his brain isn’t developed like it should be, and we will keep watching to see if he has any other seizures. Some babies develop more severe seizures, and some don’t, so we hope he won’t.

On Saturday we decided to have a family outing and went to Family Day at the art museum. We all got ready, got Peter hooked up to his portable oxygen tank, and were about the pull out of the garage when I noticed that his feeding tube has accidentally gotten pulled out while we were getting him all buckled up in his car seat. So we had to unload the car and call the hospice worker to come and put a new tube down his throat. Eventually we were ready to go again and made it out the door and off to the museum.

They country they were spotlighting for the family day was Fiji, and Lucy had a good time making a clay shark tooth necklace, coloring, eating her peanut butter-jelly-banana roll, and running around while waiting for the Fiji slide show to start while Peter enjoyed his nap in his stroller. It was nice to all be together as a family and make some memories.

When we were told that Peter wouldn’t make it to Thanksgiving Zach and I discussed what things we would like to do with him as a family before he was gone. What would you do with your infant if you knew they only had three weeks left to live? What would you want to share with them? What would you want them to experience? It’s important to me that we make the effort to create family memories and share with Peter those things that are important to us.

It could be easy to just let the days pass by and let him sleep in his little bed all night and day without even interacting with him. He doesn’t ask for much, and would probably be content to just be. I make it a point to take him out of his bed, and hold him every day. To stop and make the time to have him lie on my chest and just drink him in. Memorize his smell and kiss his head. Rub my cheeks across his peach-fuzz hair as he falls asleep under my chin. Stop and give him a kiss on the cheek whenever I pass by his crib, and tell him how much I love him.

In a situation like this in order to function you forget that your baby is dying, so that you can go forward with the day and do what needs to be done. You just put it out of your mind so that you can smile and enjoy the time you have with him, and not just cry and lament his fate. But when you do this (forget reality) it is easy to forget to stop and cherish each moment that we do have. You have to remind yourself that he won’t be here for very long, and that when you have a choice between anything and holding your baby, you should choose spending time with that precious baby, because the housework will be here when he is gone. You can check your email after he falls asleep. You can hold him while you relax and watch a movie. After he is gone you will regret every moment you chose not to spend with him while you had the chance.

And then you realize and are reminded that that is the whole point of life that has been summarized and condensed in this one situation. Good, better, best: choosing the best option. When your one-year old comes over and asks you to read a book to her do you keep reading the article you are reading, or do you stop and give her the love and attention she is asking for?

This experience has made me examine my priorities and reevaluate how I spend my time and what I focus my energy on. I still make bad choices, but my vision has been made so clear and reality has come into focus. I hope that I can continue to improve and when faced with a good option, a better option, and the best option, that I choose the best. And that I choose the best in all areas of my life.

Good, better, best.