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G-tube or Not???

Posted Oct 04 2009 11:14pm

Earlier this month I mentioned the concern of Mason's weight gain and the recommendation of our pediatrician and cardiologist to add some tube feedings to his daily routine. The option for anNG(through the nose to the tummy) is pretty much out for an opinionated 18 month old whofor themost part hasn't had one since he was 3 months old. We know the fight to keep that one in or out would probably burn more calories and more upset to his heart than would be worth it for little Mason. So, by pulling a few strings, ourped. got us into meet with a GI doc atPrimary's(usually the wait is 3 months) to discuss a G-tube also known as a "button". Before we met with her I had to take Mason in for an upper GI (where the take x-ray images of him drinking barium). It showed a normal GI anatomy and no reflux. (So that means he wouldn't need the 'nissen' ......for the other heart mom's out there, you know what that is.... for those who don't, that is a procedure to help reflux issues).

During the appointment (on May 18) she showed us his growth chart. Here are the concerns 1)he has lost weight the last 8 weeks, a little over 1 lb. He was down to 15 lbs10 oz that day:(
2)he weighs too little when compared to his height- even for a heart baby :(

But there are a few things which can contribute to this: *genetics (2 of my other kiddos were also low on the charts at this age- Preston andAmmon, just not quite this low), *heart babies' little bodies burn more calories than a healthy baby, especially when surviving on one ventricle, *he has worked for his food since 3 months old, thus burning more calories....where as a lot of heart babies keep theNGbecause they won't eat, *he was and still is too picky to take 'breast milk+formula higher calorie fortified' bottles (he has only wanted the pure stuff and directly from the source!), *his heart failure burning even more calories.... although he eats a lot of calorie packed solids and still a lot of breast milk.....being aHLHSbaby in heart failure he needs almost 3 times the calories as healthy babies his age!!

The Dr. explained how the G-tube is inserted and how it works. It is usually a same day surgery, but would probably require an overnight stay for Mason. This would be a good way to sneak in extra calories through out the day and night. But do wereallywant to put him through another surgery???

Shegave us samples of some high calorie drinks, "Boost KidEssentials1.5" (355calsper 8 oz) and" Pediasure"(237calsper 8 oz) for Mason to try. If he will add these to his daily in take then maybe we won't need the surgery. If not, then this would be what we would feed him through the tube in addition to what he already eats orally.

I am so uncertain on what to do???! Moms of kiddos with a G-tube: What do you like and not like? Actually , I know it will come down to making sure Mason is getting enough nutrition and calories to grow ....and deciding what is best for him! For now, we plan to see how he does with these new drinks over the next 2 weeks. If he will drink them (although he won't take a bottle and doesn't really understand the 'no spill'sippycups, I've either used asippycup that will drip or the Boost comes in a juice box type container w/ a straw which I squeeze it into his mouth and then he drinks it) and start gaining weight then we may hold off for now.

Now it's Friday May 29th, because I never finished this post......and GOOD NEWS.....I took Mason to the doctor today to weigh him....and he gained 8 oz in a week!!!Yayfor Mason!
He weighed in at 16 lbs 2 oz (and his diaper wasn't eve wet)!!Stillnot up to where he had been before the pneumonia but, the added drinks must be working. He likes the Boost w/ the straw the best but will drink the others also. The Boost is quite pricey though at almost $2 an 8 oz box!!! Hey that's cheaper than a surgery right?!

So I will keep counting calories for little Mason and hope he can keep gaining on his own!
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