Adjusting

Well, life at home continues to be a trial and a joy. We are so happy to be home and sleep in our own bed. However, we are finding out how stressful it can be as well. We are relying heavily on the support of friends for help with Kyler especially. He is going stir-crazy around the house and we have friends who are willing to take him out to appointments and also to the park so he can burn some energy. He definitely needs it! I have to say we are truly blessed with how well he is handling the transition home. He seems to be doing great as a big brother. I really hope it lasts. He has done a really good job of self-entertaining while I need to tend to Caden. And, he is also interested in talking to Caden and reading to him, etc. It's really very cute!

Caden has good days and not-quite-as-good days. Overall, he's doing great. The not-quite-as-good days refer mainly to sleeping issues than anything else. His feedings are going well and he doesn't appear to be in any kind of distress which is great. That is the main thing we need to be concerned with and right now he's doing well healthwise.

We saw the cardiologist on Tuesday and he was happy with how Caden's incisions looked and his overall well-being. He noted that his breathing is still a little fast, which it was the whole time we were in the hospital also. So, he wanted to increase his feedings a little bit to help give him more calories since he is burning so many with his rapid breathing. And, instead of going to the pediatrician's office every week for a weight check, we will be going to the cardiologist's office. This is primarily because there are too many sick kids at the pediatrician's office and we really don't want Caden exposed to so many germs. At least at the cardiologist's office the kids aren't there because they have something contagious. So it's a safer environment for us to to the weekly weight checks. We don't need an appointment, we just need to go in and have a nurse weigh him and put it in his chart.

Caden has been sleeping pretty well at night, at least from 8:30 or 9 pm until around 4 am. And, some nights he sleeps until around 7 or 8 am. But there are also nights when he is up at 4 and is really fussy, upset and crying for several hours. It is definitely stressful when he has a night like that. There is nothing we can do to console him and it is tough. Greg and I end up trading off holding him when he gets like that.

I think I mentioned in a previous entry that there was a possibility that one of the cardiovascular surgeons from Lucile Packard Children's Hospital at Stanford would come to our house to remove the sutures from Caden... Well, he came today and did that. I would say this is probably very unusual for a surgeon to do. However, he was going to be in the Sacramento area this weekend anyway and was able to come by and do that for us. That was great for us because it meant that we didn't have to drive all the way back over to Palo Alto just for that five-minute procedure. He was happy with how the incision looked and was healing. Removing the sutures left some holes on either side of the incision that now need to heal and we are supposed to watch those to make sure they don't get infected. But otherwise it looks good.

There are a couple small sutures from the g-tube surgery that he was a little concerned about. They are supposed to be absorbed, but they are currently not doing that. So he wants to talk to us again in a couple days to see how they look and he said if they don't look better, they still might want us to bring Caden back in to get those looked at. Hopefully that is not the case.

The other thing he looked at was the g-tube insertion point. When I looked at it earlier this afternoon, it looked infected to me. So when we asked him about it, he looked at it and thought it looked okay. He said it looked more like granulation tissue and not infection. So that was good news for us. The last thing we need to deal with is an infection around there again.

Anyway, that's where things stand at this point. We are trying to adjust to our new normal and are so happy that Caden is home. It is very strange because in many ways it seems like Caden is a newborn even though he is over two months old. And in other ways it seems like he is older than a newborn. I think it goes back to that weird time warp feeling we had when we were at the hospital. We felt like time was standing still for us while the world kept on revolving around us. And now it feels similar with Caden. It's like he's in a time warp where he looks like and behaves like a newborn but he's really an infant. It's very odd.