long and overdue

So we've been home for over a week now. Gabe has his NG tube still. We are offering him 70ml in his bottle every three hours and whatever he doesn't take, we put down the tube. We went to the Cardiologist on Wed. His weight was up slightly, but they told us to up his feeds to 75ml per feeding b/c they want him to gain a little faster. They also made some medication adjustments. On Thursday, we went the the Ped. office. She thought he looked good. She reiterrated how sick he was and agreed with me that it would be a good idea not to take him out in really public areas b/c he CANNOT get sick. She also did not know why he got so sick so fast, but told me to go with my gut and if I'm ever worried, go to the ED. When we were at the pediatrician's office, Gabe threw up all over me which was odd for him. Throughout the day on Thurs., I also noticed he wasn't eating as well. Justin also changed a diaper that day that he thought had some blood in it. I didn't see it, but he thought it was definitely noticeable. Around dinner time, Gabe was not eating well. He seemed like he was in pain when I was giving his tube feed. He started refulxing some. When he does this, he kind of bears down and holds his breath to fight it. His face turned really red and he was crying unconsolably. When he finally stopped, he looked pale and kinda out of it. I called the pediatrician who we had just seen earlier that day and told her I was worried and she agreed with me that we should go to the ED. I called the Cardiologist on the way and he met us in the ED at Children's. Because we had made some medication changes the previous day, I was kinda worried about his potassium level and blood pressure. Of course when we get there, Gabe looked great and wanted to play and flirt with all the lovely nurses. I felt kinda silly, but I was glad that I knew he was all right. The Cardiologist didn't really have any good answers for the blood in his stool. He said if it happens again to let the Ped. know and it hasn't. Maybe he was just straining or something. As far as not tolerating the feedings well, he just said to cut the Lasix dose if we think he's getting dehydrated and continue to use refulx precautions and give the tube feeds very slowly. He also hinted at the idea that b/c Gabe is a pretty fragile little guy who leaves everyone scratching their head, they want to watch him closely and may be leaning towards surgery earlier than later. He also told me that he "misspoke" on Wed. when he told me the ECHO showed his vertricles were back to normal...they were actually the same as when we were discharged which is still not totally up to par. I was pretty upset at the doc for that. So, Gabe has still spit up from time to time. You can hear him refluxing with his feeds and you just hope he doesn't get sick. We're feeding him very slowly and then holding him upright afterwards. The whole process is taking about 60-90 minutes to ensure he keeps everything down. I know all babies spit up, but this is just new for him and he seems uncomfortable after feeds when he use to go into a food coma sleep. The dietitian is going to call me back tomorrow. Part of me wonders if he's Lactose sensitive, but it seems like we would have noticed something before now. Poor little guy. I hope so much his ventricles get back to baseline so he can be as strong as possible for this surgery. I'm starting to get really worried about the surgery. I feel like this last hospitalization was just a preview of what is to come. I need to stay more positive though. So, here are the positives: Gabe wants to smile so bad...he's so close...it's going to be so cute. Gabe is also sleeping much better at night. We are the one's waking him up to feed him. Katie's wedding was fun. I'm so glad I got to be a bridesmaid. I was worried I wouldn't be able to with everything going on with the baby. It was nice to feel like a girl again. Yay for Grandparents being able to help with Gabe and learning how to feed him and give him his medicines.