Sorry I've been so bad about updating the blog. I consider myself to be a pretty organized and efficient person, but having a baby really screws that up. I am learning that in order to get anything done, I have to make lists of things to do such as "un-decorate the Christmas tree" and "update blog," and then rush to check things off the list when Magnus takes a nap.
The biggest development has been that one week ago, Magnus pulled out his NG tube, and we decided to experiment with not putting it back in. We thought we were going to have to put it back in after a couple of days, but he surprised us--he hasn't really lost any weight, but he hasn't gained any, either. He had a cardiology appointment yesterday, and I was worried that the cardiologist was going to tell us we had to put the tube back in, but she didn't. However, she did say that his weight over the last week was "not a rousing success," and basically, he has to step it up over the next few days or we have to put the tube back in.
We really don't want to put the tube back in. It's interesting, medically, an NG tube is not a big deal. It's a minor intervention, they work well, parents can maintain them at home by themselves. But for us, the tube is a huge deal. It's going to be tough for us to go back to work and hire someone to take care of him if he has to be fed through a tube. And of course, the tube is right there on his face and marks him to the world as a baby with health issues. And then there's the fact that kids who have feeding tubes for long periods of time can become dependent on them and become unable to eat normally not as a result of their underlying health problems, but as a result of the tube.
The most important thing, though, is that he grows and gains weight. So, we're really hoping he picks up his weight gain and we don't have to wrestle with putting the tube back in.
Other than that, we have been fortunate that Magnus has had no significant medical issues.
We had lots of family here over the holidays, and are continuing to have a number of visitors. Originally we had thought about maybe throwing a welcome home party for Magnus, but ultimately decided that it might be better just to have smaller groups over. So, if you have been wanting to meet Magnus, you are welcome to come by pretty much any time! Just call or e-mail us to let us know when you want to come. And of course, please hold off on coming by if you are sick, think you might be getting sick, or have been around sick people.
I have also been really bad about posting pictures, but our friends Mo and Ian came by yesterday, and Mo took some great pictures that you can see here. There are a few more videos up on youtube, too. So hopefully that should be enough of a Magnus fix for those of you who can't come by in person!
5 months ago