Or as Jen (Sofie's mom) says, C.U. or "See you" later NG tube :)
We've started C on an intensive weaning program thanks to Jen and her "Peetie Unplugged" plan that successfully weaned Sofie from her NG tube. We'll forever be grateful to her for taking the time to post her plan in so much detail. We have, of course, made adjustments to personalize the plan for C, but the basic premise remains the same.
I should begin by saying that ALL of this is under the complete observation of his Docs at Duke. We would never make changes to his nutrition without their blessing and input. Please do not read Jen's plan or this plan and immediately begin your own without consulting with your child's physician.We're now on Day 15 of Phase I and Carter has made HUGE progress. So much so that we've gone from 8 formula feeds a day to 6! And he's gained weight while doing it. These formula feeds are either bottle (sleep eating) or NG feeds. Basically, we began by decreasing the volumes he was getting so he'd be more interested in taking in more by mouth. He does not eat based on your normal hunger cues, because he's never learned to make that distinction. But, I liken to drinking several large, thick milkshakes, and then someone asking you to follow them with a Thanksgiving feast. You wouldn't be motivated to feast, either. So, we are lessening the milkshakes.
In place of the lost calories from the dropped formula feeds is...REAL FOOD! wooooo hoooo!!! He's
slowly, but steadily, increasing his daily intake of pureed foods and milk. Milk? Yep, we got the all clear for whole milk and yogurt. Even though he's not quite 1 year old yet, it's more important to find something that he enjoys to eat and drink. C LOVES ice cold milk and is drinking it from a straw like a champ. It makes sense because (1) he teething, and the ice cold probably soothes his gums, and (2) milk is basic and it counteracts the acidity of the reflux, so it's likely very soothing to his throat and tummy. As he takes in more by mouth, we slightly reduce what he gets via NG, which has allowed us to drop 2 formula feeds.
Another change is that we started thickening his NG feeds. We've been thickening the night-time bottles with rice cereal, but the rice was too tacky to put through the NG tube without clogging it. We are now using Thick-It, which has the added benefit of additional calories. This, in combination with restarting the Reglan, has GREATLY reduced the emesis (vomiting). He's now down to 2-3 episodes a day and half of those are just spit ups; the other half are very small. SPIT UP??? I never thought I'd be able to use those normal baby words with C. This is a huge change from the voluminous, projectile vomits he was having 6-7 times a day, during which he'd "return" to us more than half of what he just pumped into him.
We continue to work with him on learning to use a sippy cup, but he definitely prefers a cup and straw. The only thing he does with a sippy right now is shake is vigorously, laughing at the sound of the liquid sloshing around inside. And every once in a while, he'll toss it to the ground and laugh when it hits the floor. Silly Monkey!
We had a conference call with Dr. M and Dr. B today and they seem pleased with his progress. We're still discussing the G-tube issue, but we have resolved that even if he gets a G-tube, he will NOT get the Nissen. It's not really necessary since we've been able to control the emesis with other means. The G-tube, though, has its advantages over the NG. (1) the NG is causing overproduction of mucous, which gags C, (2) C is becoming increasingly aware of the NG, which means he's going to begin yanking it out more often (is that possible to do it more often?), and (3) the presence of the NG in the back of the throat can lead to delays in oral eating skills and language skills. Brad and I strongly believe that the presence of the NG in the back of his throat is partially a reason he won't eat much. We go back to Clinic in 2 months, during which C will have developmental testing, so we'll make the decision about the G-tube at that point. If C makes a TON of progress and he's almost there, then we'll probably just hang on to the NG, but if the progress is still slow, we'll likely schedule the G-tube surgery.
Another piece to the puzzle is keeping the food moving through him. The Reglan speeds the movement of food from the stomach to the intestines, but we have to help the intestines move the food OUT or it completely zaps his desire to eat, so we're giving him Miralax to help things along. I'll save the details for the sake of C's dignity. He might marry one of your daughters one day and I don't want this to be the detail you remember as you walk your daughter down the aisle! haha :)
We've been keeping a detailed log and it's pretty amazing to look back and see that 2 weeks ago, he wasn't really taking in much liquids and now, when he sees a cup and straw, he grabs it with both hands, sticks the straw in his mouth and drinks away. Of course, this still has to occur on his own terms and if we try to make him drink, he won't; if we let HIM control the cup or spoon he does much better. I guess he inherited my control-freakness!
Finally, C has three full-time teeth, and four part-time teeth (these are the ones just breaking through). The full-time teeth are the two lower central incisors and the left lower lateral incisor. The part-time teeth are the right lower lateral incisor, the two upper central incisors, and the right upper lateral incisor. Poor baby! He's been a bit fussy this week, so we're hoping the teething doesn't set him back too much with the feeding.
This is certainly taking up much of our time, as we are devoting all of our free time to working on making eating a fun experience for C. If we've been MIA from your lives and haven't returned emails, phone calls, texts, etc. now you know why.
Please keep your fingers crossed, say prayers, send positive vibes, or whatever you do to make good things happen. We're feeling very optimistic about "Carter Unplugged" and maybe he'll be tube-free by his birthday!
Thanks for stopping by. Please continue to think about my buddy, Andrew, who Mommy & Daddy say is an Angel now. 
Will got out his Doctor kit and checked Carter's heart. Sounds good!
Ella buried Carter in all of her stuffies while he laughed and laughed. Can you find him?
Kelly & I went shopping and found these monkey sunglasses
