Saturday, May 23, 2009

G-tube or Not???

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 an NG (through the nose to the tummy) is pretty much out for an opinionated 18 month old who for the most 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, our ped. got us into meet with a GI doc at Primary'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 and Ammon, 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 the NG because 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 a HLHS baby 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 we really want to put him through another surgery???

She gave us samples of some high calorie drinks, "Boost Kid Essentials 1.5" (355 cals per 8 oz) and "Pediasure" (237 cals per 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' sippy cups, I've either used a sippy cup 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!!! Yay for Mason!
He weighed in at 16 lbs 2 oz (and his diaper wasn't eve wet)!! Still not 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!


Kaidence's Mommy said...

Ok, so little miss K has been losing weight as well. We are trying to crank up her tube feeds with Pediasure and the Duocal.

As far as the G-tube, I was very unsure about putting Kaidence through another surgery. She was already on a feeding tube but the more mobile she was the harder it was to have a tube in her nose. However, we decided to just get it over with and do it. I have been suprised at how much I like it now. It has kept her out of the hospital many times because when she gets sick she completly stops eating. This way all of her meds and feeds she can still get without having to take it by mouth. She stays hydrated well.

We sometimes have to put cream on the g-tube because Kaidence's will sometimes get inflammed. Anyhow, overall I am very glad that we did the g-tube and I think that it has saved us a lot of time in the hospital.

Kyle and Alli said...

We had to go through this debate as well when they did Grant's Nissen. We opted out of the G tube because at that point, he was gaining weight and had never been given the cance to swallow. I did however talk to a LOT of moms (there was a discussion on the IHH website not too long ago about this issue) who had kiddos with G tubes and the unanimous vote was that it was helpful in the long run. Hopefully Mason will continue to gain some good weight on these drinks and you can avoid another surgery. Good luck! (and his pictures in the post above are precious!)

Gourley said...

As you know, Carter has never liked to breastfeed or take anything from a bottle. With his bad reflux, he always feared something going in his mouth.

We had the NG for over a year. As you well know, trying to deal with that on a daily occurance is difficult and not fun. Carter also required a nissen because of his issues, so it made it a no brainer for us to opt out for the Gtube.

Our issue, is that his pacemaker was in the way. They had to move that over to the other side of his belly. That caused issues with his pacemaker, but because you do not have to deal with that, it should be a pretty easy procedure. We love and hate the G tube. His growth is going well, he is up to 22 pounds today (We had a cardiology appointment today) and he is never dehydrated. It is nice for many reasons, however, if I was to say that there was something that I did not like, it would just be that we get more worried about it getting pulled out. He scoots now too, and he pulls it to the point that it can hurt if we are not watching. We worry about our clumsy and ignorant dog, but other than that. I would go for a G tube hands down over NG if you need it.

Good luck.