Today I worked with Connor on the bottle again. He took another 15cc by mouth, but then got tired. He exhibited a good rooting reflex and latched on the bottle right away. He had a desaturation while feeding and his color turned dusky, but he recovered himself without problems. The rest of his feed we put down his NG tube.
Logan has taken a couple steps backward. He had a very funky episode of cardiac arrythmia and scared the nurses. I am glad I wasn't there to panic. He has also lost weight the last 2 days and is down 120 grams to 2lb 13oz. We aren't sure if he is working too hard to breath and is burning too many calories or if it is the diuretic or the scale is faulty. He had his feeds increased yesterday, but lost weight. He is continually requiring 30% oxygen and if they try him at 29% he instantly desats. They talked about a trial at the nasal cannula again tomorrow, but i am afraid for him that it will be too much. I am meeting with the cardiologist Dr Ghazali on Tuesday and that feels like light years away. I have a lot of questions to ask him about the boys conditions.
Again I feel so guilty they have these heart problems and wonder if they had been able to last inside longer, if they would have the same problems. I will never know.