It’s Friday!
OK… that has much less meaning when you’re not working and all of your days and nights run together. But it still feels good to say it.
There is nothing new happening here. We’re still working on feeding and the little guy is still having trouble. We attempt to feed him by bottle for a few minutes and once he gets tired of it we switch over the rest of the feeding to his NG tube. If he’s interested then we also give him the pacifier so that he associates sucking with his belly getting full. The doctors and nurses say that this is completely normal after such a surgery and not eating at all for several days. It will just take time for him to relearn. I think that his “feeding schedule” also has a big impact on how well he’s doing. Here at the hospital it’s every 3 hours, no if’s, and’s, or but’s. He must have his calories…. they are calorie crazy. Babies sleep, eat, and poop, not necessarily in that order and certainly not according to a clock.
It’s likely that Dr. Hirsch will make the decision on the pacemaker early next week. Although Sarah and I don’t like the idea of him having a pacemaker we feel like it’s the best thing for him. Even if he comes out of heart block today and everything looks great there is no guarantee that he won’t go back into heart block at a later time. With his heart’s anatomy he will always be at a higher risk for complete heart block and will very likely need a pacemaker someday anyway. I feel like if he gets it now it’s kind of a safety net. I would hate to go home and in 3 months, he go back into heart block. Granted, it’s not life threatening, his heart will still beat, but the risk is more than I care to take.
Here are a few pictures that I took this morning of Evan and his favorite bear as well as his feeding tube. The tube, called an NG tube, goes all the way into his stomach. We add fortified breast milk to an open syringe and allow gravity to slowly drain the milk into his stomach. Sarah has been a milk machine, this morning she pumped 11 oz! That’s enough for 5 feedings.
