Cayman's G-tube

This is what Cayman's G-tube set up looks like. It's a little different than a regular G-tube feeding. The syringe at the top is called a "chimney". The tube that comes out of her stomach hooks into the syringe that is open to the air. This allows the air in Cayman's belly to be released. More bluntly stated...she belches through this tube. Once in awhile she burps through her mouth but it's mostly through the syringe. The chimney allows for her stomach to be under less pressure while it heals from her belly surgery. The chimney is hooked up 24 hours everyday for a month. This makes holding her and moving her around challenging. The chimney needs to be suspended above her body. The picture to the left is how it was set up at the hospital. Of course they have the perfect set up for these sorts of things. So here at home we've had to get creative in how to suspend the chimeny. Good thing I have an engineer for a husband. He came up with this idea: There's a fabric band velcroed around the top of the syringe. We use a clamp to hook this fabric to one of those post-it boards. We stick the post-it board down in the cushions of the chair or couch we sit on when we hold her. We are very careful to never forget about the chimney. If we would just stand up with her or move her forgetting to take along the post-it board with the syringe attached, it could tear the G-tube right out of her belly and then we'd be off to the E.R. We have an emergency G-tube replacement kit that we keep in the diaper bag so it always goes with us. If the G-tube would happen to pull out of her stomach we have only one hour to get to the E.R. before the hole starts to close up. If it does close up too narrow that they can't get the G-tube back in then Cayman would be taken to surgery to place the G-tube again. So you can see why we NEVER forget to be mindful of her G-tube chimney set up. We are really looking forward to her not having the chimney part anymore. Once she loses the chimney syringe, she'll still have the G-tube for another month. That's what the doctor said. Cayman has been uping her feeds more and more every day through a bottle that maybe the doctor will take the G-tube out earlier than he anticipates *fingers crossed*. The chimney is the largest part that makes holding her, bathing her, dressing her, etc. challenging. This picture shows how we hook the chimney up when she's in her bassinet. We use this same kind of set up for her car seat too.

I've had a few people ask me, if I'm already pumping why don't I just breastfeed instead of bottle feeding. The ultimate goal is definitely to feed at the breast. Cayman has a very weak "seal" around the nipple, so until she builds her mouth muscles up, she won't be able to latch on correctly to the breast. Plus bottle feeding allows us to accurately measure out the amount of food she is getting so we know how much to put through the G-tube if she doesn't take it all by bottle. She's shown such improvement in bottle feeding in a short amount of time so I'm hoping it won't be much longer and she might be at the breast. How nice it would be for me...and Mike if she would. It would majorly cut down on all the steps we have to go through right now for each feeding. It's almost like feeding twins or maybe even triples with Cayman: 1) I pump before each feeding 2) She bottle feeds and 3) whatever she hasn't taken from a bottle we finish up through her G-tube. This last step varies in how long it takes and that's dependant on how much food we have to give her through the G-tube. A full feeding through her G-tube takes an hour. Sometimes it's so tempting to skip the bottle feeding step so it's quicker and we can get more sleep but yet that's not fixing anything in the long run. So there's some extra challenges there, but I think it's overall going well.

We've also had a lot of people asking when we are up for visitors. I don't know an exact answer to that just yet. We are very exhausted from Cayman's feeding schedule alone, and then we have a lot of other stuff going on like doctor checkups, home nurse visits, planning a trip to Duke for the stem cell infusion, etc. Plus trying to get some sleep. Cayman has been very fussy since we've brought her home trying to adjust to everything herself. She's better than that first night when arrived with her. So we're also concerned that a lot of new commotion could back-step the adjustment she's making right now. So once her feeding schedule is less hectic, she's more adjusted, we get rested up we'll be ready for visitors then. I'm so sorry we don't know for sure when that will be. Hopefully sooner than later because we are so excited to have everyone meet our beautiful Cayman.