Mended Little Hearts Meeting

Well, Harlie is still fighting some bug. I had to take her back to the pediatrician again yesterday. They are doing another trach culture. We knew when we left the hospital that she was fighting some trach germ. They just didn't have the results back yet to determine if the antibotic could fight that particular germ. And she didn't seem to be improving, so they took another one just in case something else started growing. She also gave Harlie another antibotic shot. Hopefully we'll see an improvement soon. Because of her increased secretions, she's been vomitting a lot. So the doctor put her on continuous feeds for the next day or so to see if that helps her keep her food down.

We had occupational therapy yesterday. I think we pretty much agreed that getting Harlie to learn to bottle feed just isn't a reality. So we are going straight to baby food. We aren't going for volume, just trying to show her that food has taste and can be pleasant. She gave me a special spoon to use that is flat and small so it isn't so invasive in her tiny little mouth. She did pretty well overall. She didn't reject it or gag, which is great.

Last night my friend Karen (her daughter is Jameson who just had the Glenn procedure a few weeks ago as well) and I went to a Mended Little Hearts meeting. It was our first one. I would never have gone without Karen going with me, so I was glad she asked me. We met some nice people there. There was a 13-year old girl with a very substantial scar from her heart surgeries. But she seemed to be okay with it. She was wearing a v-neck shirt so she wasn't hiding it, which I thought was great. There was a mom there who calls her son's scar his miracle line or magic line. I thought that was very clever and will probably copy that. :)

It was just nice to talk to other people who had similar pregnancies, made similar choices and experienced the same fears. It is too easy to feel so alone in all this. Well, that's about it for now. We have physical therapy and a helmet fitting today. Hopefully that shot will start to kick butt so Harlie can go back to being her happy self. Grandma left today to go back to Pennsylvania. She was such a big help to us and we will miss her. Well, thanks for all your support.

I hope you are all well!
-Christy