G Tube life

After our 5-month NICU adventure, it seems that no matter where I go, I see kids who are using the support of some device I learned about while in the hospital. We learned about LOTS of things there, and I am very happy that we have so few of them here at our house. We are getting the hang of this G Tube business, I think, and his heart monitor has not had too many false alarms (only once when the leads were loose) and had provided us with considerable peace of mind. All things considered, e is really quite well off. We were at CHOP again on Thursday, and he was able to get his hearing aids for the first time. He can definitely hear without them, but I can already see that they make a difference for him. As soon as we put them in, he perked up and started talking more than usual. We are having some issues with them in getting the feedback under control, but once we get that sorted I think they will be a great asset to him. In case you are curious about e and his accessories, here is some info about how his G Tube works and fits into our daily lives. (I'll put up some pictures eventually)

The G Tube is actually a little cap-looking thing, sort of like the thing you blow into on floaty toys or a blow up beach ball. The "extension set" is a tube that clicks onto the G Tube opening and twists into place. There is a clamp and two ports on the end of it. His food plugs into the larger port and medicine can be injected into the smaller one. It has to be 'primed,' or filled with water before it is connected so that when the food is hooked up it doesn't send all the air that was in the tube into his belly. His food gets put into a bag with a long tube and a little contraption that gets plugged into a pump which meets out the milk at a slow pace which allows him to digest it a bit better. Some kids with G Tubes can be fed 'by gravity'--where the food is just put in a syringe, attached to the extension set, suspended above the baby, and allowed to run in at whatever velocity is permitted by the tubing. e can't quite handle that, so he gets his food from the pump. Each 'bolus' feed during the day takes about 45 minutes. He eats at 8a, 11a, 2p, and 5p. Before and after every feed, we have to 'vent' him, wherein we connect his extension set to an open syringe and suspend it above him in order for him to get the extra air out of his belly. Because of his Nissen fundoplication, he has trouble burping like a normal baby would. This 'venting' business allows him to get the bubbles out. We have referred to it before as his 'Freud time'--he lies down and 'vents.' Get it? Ha. We crack us up. His G Tube site has healed up really well, so all we need to do to care for it is keep it clean and dry. A few swabs with Q Tips each day does the trick. It is also permissible for it to be submerged, so he is allowed to have baths (much to his chagrin). Also because of his fundoplication, e is not able to put enough food in his belly during the day in order to sustain himself. Therefore, he is fed continuously through the night as well. This 'continuous feed' begins at 8pm. We have to change the rate and dose settings on the pump each night and morning. Overnight, he gets 440 mL over 10 hours, so he is hooked up to his food from 8p to 6a. It is not ok to leave the breast milk out all night, so we have to pour in fresh stuff around midnight and then we just let the rest run till morning. We are technically supposed to change it every 4 hours, but going 6 doesn't seem to have caused any problems. He gets a fresh extension set once every week and a fresh feed bag each morning. His G Tube needs to be replaced every so often as well. Eventually I will be able to do that at home, but the first one will be done by the surgeon. We are slowly getting the hang of things. I have learned some tricks to make feeding him on the go a little easier, and I have great hope that this will all someday feel manageable. We are still working to get his retching under control. This sometimes alarms people when we are out in public. Poor baby. It can't be nice for him, either. I am grateful to know about some of the things we can feel grateful NOT to have, and I am grateful for the aids he does have that make his life possible.