Bittersweet Progress
This past week has been amazing and everything we hoped for when we decided to bring Patrick home. Our Hospice team is amazing, and we have had the chance to make lots of memories together. Patrick met most of his aunts, uncles, and cousins, and our photographer friend took tons of pictures to capture the moments. We had a 10-month birthday party for him and discovered that he would eat frosting! Like, put it in his mouth and swallow it! I told him he could have a cupcake every day of his life since he finally found something he would eat by mouth!
We took him to church yesterday and had an open house in the afternoon for people to come meet home. Some dear friends from Chicago, one of whom is an adult CHD survivor and heart transplant recipient who shares Patrick's birthday, surprised us by showing up! He played in the jumperoo, smiled, played, napped, and charmed everyone in person just like he does in his pictures. I was so worn out when it was over---too much socializing for this introvert! Still, I was so glad we were able to do it. I know folks were excited and pleased to finally get to meet this little man.
He and I also had some great snuggle time yesterday. I am trying to make the most of our time together. It's hard, though. When he's been screaming for an hour, all I want to do is run away. And I feel guilty when I have other people watch him so I can take a nap. I just keep reminding myself that I have to take care of me. I'm no good to anyone if I don't.
Some days, it’s easy to convince myself that he's getting better. He looks so good and smiles all the time. He's still learning and developing. He's alert and babbling. I have to remind myself that he's comfortable because he's on so many medications. And I struggle everyday to find the right balance between remembering he's still here and remembering that we don't have much time left.
That struggle was even more pronounced today; the most amazingly wonderful and sad day we have had so far. Because (excluding the frosting referenced above) Patrick finally ate by mouth again! I tried it on a whim. Maybe I was hopeful because of the frosting, or maybe it was the interest he was showing in a water bottle. Whatever it was, I gave him a sippy cup with water; just to see. Well, he took to it so quickly and got so mad when it fell out of his mouth. He had about 2 1/2 ounces before I thought to switch over to something caloric. He also had some trouble with the rate of the feed, so I switched to a bottle with milk and *BAM* another 1/2 ounce. He was super uncomfortable afterward and needed serious venting from his tube since he had swallowed a ton of air and can't burp, but WOW! I never expected him to drink, let alone that much volume, and certainly not that quickly. After struggling for so long with no results, we had just given up because it didn't matter anymore. Well, he sure showed me! He reminded me that he's still here; that he's a learning machine; that his instincts still work.
I was (and am) so happy and excited at this achievement. I am radiating "proud mommy" vibes, particularly because it's something I never thought he would achieve. At the same time, I am so angry and frustrated that he's figuring it out so late in the game. Why now?! When continuous tube feeds are more convenient; when he doesn't need to know how; when it won't make any difference. I think he was saying "Don't write me off, mommy!" He was reminding me that his brain is still working. He's still curious; still learning and figuring things out. Because his brain doesn't know that his heart can't sustain him. So, I'm going to do my best to treat him like he's normal. Whatever it looks like he wants to try to learn, we're going to do it. And it will be amazing and sad and wonderful and bittersweet. Just like life.
