Life at home for the first week has been long and tiring, but we’re happy to be here! The visiting nurse has been stopping twice a week to help answer questions, check on Kevin’s health, and weigh him. He hasn’t gained much weight in the last week which is not what they want to see. But, he also hasn’t lost any, so that’s a positive. We have put the NG tube back in and secured it pretty well, since we expect it to be in for a while longer. He’s still not eating as much as they would like him to. He will take full feeds (currently 60cc’s every 3 hours) sometimes with no problems, but other times want to take much less or puke up a bunch of what he takes. We’re getting used to it, though, and learning what works well for him. We really don’t want him to go back into the hospital because he isn’t gaining weight, so we’re doing our best to make sure he gets his full feeds on schedule.
Christmas was enjoyable, but of course a lot more work with a baby around! We kept it pretty simple, and it was great to have him home with us.
Kevin has his first post-hospital checkup with the cardiologist on thursday the 5th. They will do an x-ray and an echo to check on his lungs and heart function. We haven’t noticed any problems with his energy level or him turning blue or anything, so we don’t have any reason to believe that his heart isn’t doing well. He then has a few more checkups later in January, but otherwise it’s mostly the visiting nurse who is doing his checkups and answering our questions.
Being so busy and tired from having Kevin home, we’ve realized that we haven’t taken many pictures or done many updates lately. We will try to do a little better, but don’t expect more than a couple updates a week. Happy New Year!