This is Gage's stomach. Yes... its literally upside down! The doctor drew this after his ultrasound. The top half is normal. Food goes down the throat into the stomach and out the bottom. Well in Gage's case, food goes down his throat into his stomach and then has to go out the top- like it has to fight gravity and get pushed upwards to leave his stomach. Crazy huh!
Yes. We're still alive. Yeah I know... its been a while! This kid keeps me crazy busy.
We finally got to a better schedule with feedings every 4 hours. We do almost 5 oz every 4 hours except we skip the one in the middle of the night so he can get lots of sleep at night and get on a better sleep schedule. And he totally has. And life is so much better when you kinda have your day mapped out of when he eats, then play time, and when he usually naps. Its fantastic!
And just when we were really getting used to that great schedule everything has to change. We told the surgeon that on average he will nipple around 2 oz from the bottle and then we will gavage the rest through the feeding tube. But that he has kinda hit a plateau with his progress. So she suggested a tube holiday. Take the feeding tube out and see how he does. Then he will control when he eats and how much and might just feel better without the tube. She said the tube can kinda give him like a chronic sore throat just from being there and moving and rubbing all around. So the plan was to take it out Saturday night. That way Trev could be at home all day with him while I'm at work, then we could give him the full 5 oz then put him down for bed, he could sleep through the night, and then both Trev and I could be home the next few days to help. Cuz then Gage is gonna basically be starting out like an infant. A couple ounces every couple hours.
Well the one thing we forgot is that Gage calls the shots around here. He just decided to puke up his NG tube Friday night. So... change of plans. We figured we would just keep it out and start the tube holiday early. But of course Trev had to be working all Friday night. So I'm kinda a zombie right now... living on an hour of sleep here and there. Luckily my in-laws came down for the weekend and my mother-in-law was able to help me out a lot (she's fantastic!!!). And so far Gage is doing ok. He will cry when he is hungry (which is usually every 2 and a half hours) and then nipple around 2 or 3 ounces. So we will give him like 2 or 3 days without the tube so as long as everything continues to go well, we will be able to keep the tube out. I'm trying not to get my hopes up too high, just in case we have to put the tube back in. But its hard... I'm like giddy with excitement at the progress he's making. And we're gonna be starting feeding therapy where they work with him and do different oral exercises and things to help improve his feeding and swallowing.
As far as his belly goes, its pretty much all healed over! We basically put a bandaid on it just cuz that skin is so fragile. And when we saw the surgeon this week she said her office would be calling us to set up surgery for the beginning of October. The surgery would basically be to push everything in so his abdomen is flat, bring his abdominal muscles together, and fix his hernias in his scrotum. She said she isn't really gonna mess too much with all the different organs in his belly. They are all jumbled together... like I'm talking his stomach is literally upside down and nothing is where it's supposed to be (like gallbladder, appendix, spleen, pancreas, etc.). It was hilarious watching the doctor do the ultrasound. It took her like 5 minutes to find his gallbladder. She just kept saying "I know he's got a gallbladder; it's gotta be around here somewhere."
And he is doing so much better developmentally. Like he is a little behind cuz he's got generalized weakness but otherwise pretty on track. He's starting to laugh and be fun and interactive, reaching for things and playing with his hands and everything. He can hold his head up all by himself when he's sitting up, but we have to help hold his body. He actually turned over from his belly to his back (both sides) for the first time yesterday! And he doesn't really like tummy time very much but he can hold his head up for about a minute before he starts fussing and crying.
So things are moving along. Hopefully they keep moving (in the right direction!). So keep praying real hard for us! (yes... I'm soliciting prayers!) We are so grateful for all the prayers already coming our way!! We know they help!!!
