Need info about n/g or g-tube feedings

[Anonymous]

Quinn is my 11 month old severe refluxer. Weight gain has been absolutely horrible. The doctors were talking about placing an n/g tube, but one doesn’t think it will be effective because she is an older baby and will likely rip it out. WE only need it temporarily, to try and help her gain some weight. They are talking about placing a g-tube in her instead, but i’m pretty apprehensive about the surgery. Is it necessary? Should we try the n/g tube first? Are there any experiences with the n/g tube in an older infant? Any success? A g-tube just seems too extreme for me… but I’m also pretty biased and just want the best for my baby.

I should also add that Quinn throws up, but not frequently at all. The theory is that she burns too many calories eating and that is why she cannot gain weight. She is in OT to help build up her muscle tone in her upper body. so, g-tube or n/g tube? And does anyone know where I can research good information about the g-tube surgery? How did your kid do after the surgery? Was it successful? Did it do what it was supposed to do to help?

-Sarah

[Anonymous]

Hi Sarah,
I sent you a PM with a site that you can get some good feeding tube info.

My son had an NG tube from birth to 4 mo, and a G-tube since then. I’m not sure what to tell you, because I think if it is only temporary, it might be best to avoid surgery and try the NG tube, but like you said, she’s very likely to pull her tube out often. Even when Bryce was 4 mo. old he pulled it out quite a bit and we had to put it back in.

As for the G-tube surgery, it was a very simple procedure, and Bryce was only in the hospital for one night. He only had to take tylenol once we got home. Bryce has always had a feeding tube because he has never learned to eat orally because of all of his issues, so it’s a little different situation than yours. I think feeding tubes should be a last resort, but if you’re really concerned about her weight gain, then you may want to try it.

Good luck!

[Anonymous]

Hi Sarah

The website that i think Heather sent you to is great for info but here are some answers to your questions and some comments

– on the ng tube – Matthew had the ng tube for 7months or so, maybe a little less, i guess so confused these days. his problem too is reflux – his reflux sucked and while i think it is pretty much under control now, he still has esophagitis on meds… so i know it is still there. Why do some doctors want to do the ng before?? Well like you said, the doctors THINK that your baby is burning a ton of calories, i imagine more than the normal baby… well, if you have the NG for a couple of weeks and you are able to supplement the calories, you will be sure whether that was the case or not. Now, if you need a big increase in calories vs what other babies are taking, i would keep asking for questions as to why the baby may be burning so much.

– there are some babies that have anatomic issues (ie issues with teh positioning of certain organs of the digestive track or other organs close to the track) and therefore these babies cannot have Gtube surgery… so they stay on the NG tube for a long time.. there is a mommy on the other board whose baby is 3 years old and still on NG… there are other mommies whose babies are your babies’age and just got the NG and are not pulling it that much… my instinct would be to go with the NG for a little while…

– the Gtube surgery is really simple – there are 2 ways to get it done… you can have a GI do it via endoscopy (so the stoma is created from inside out) or you can have a surgeon do it (they do the other way). We had the endoscopy way because we wanted another chance to get a look at the esophagus and do some biopsies to look at damage. Either way is fine and there are usually no complications. We also were in the hospital for 1 night… we had alreayd had the NG for a while so we knew everything about pumps, rate etc. I imagine if you go straight to Gtube you will need some help from the nurses figuring all of these things out

– you mention upper body strength – is this hypotonia or just something caused by reflux? Matthew has normal tone but given the pain of reflux he was unwilling to use any upper trunk muscles for a long time… the way we are helping him is with PT, not OT

– why do they think she burns calories eating?? The only thing i can think of is poor muscle tone in her mouth as well?

Our ng was supposed to be temporary… unfortunately for us, we are still dealing with feeding issues, but some babies only require a little extra help to get through the bump.

Hope this helps – the other website has all the info you want on the surgery, the types of tubes, what they look like etc etc. Take a look

[Anonymous]

Hi, I will definitely check out this website. matthewmama, thank you so much for the information. You don’t know how much you’ve helped me out.

As for the low muscle tone, she is diagnosed with hypotonia. We have a PT evaluation scheduled for next month, i believe. She has weak muscles in her shoulder girdle, her throat, mouth, jaw, cheeks… etc, it takes her longer to eat her bottle than most kids, and she doesn’t cup her tongue, she has a tongue protrusion, she has a weak soft pallet, and that’s what the OT is helping with. She also has difficulty swallowing, but none of this has effected her eating negatively, other than the low weight gain and occasional choking. They think she burns lots and lots of calories eating. She also extends her jaw way more than she should and she bites the nipple instead of cups it. The doctors are so very surprised she has not developed an oral aversion, and for that we are lucky, but they also told us not to hold our breath. They want to put her on a continuous drip at night since she doesn’t have a problem with food. Which is probably another reason why they want to do the g-tube instead of the n/g tube.

I will talk to the doctor about the n/g tube instead and see what they say. I think i’m going to go for that instead of the g-tube, at least for trial. I’d hate to put Quinn through a surgery and I heard that they get infected a lot.

-Sarah

[Anonymous]

I have to feed Matthew but will post in a bit if you are still around. Otherwise see you on the other board… i am always on the feeding issues and aversions site… and the tube feeding one.

[Anonymous]

Sorry I am back.

As per the night feedings – that is what a lot of us start with anyway, whether we have an ng or a Gtube. My baby has never stopped eating completely and we also started supplementing at night. Then when they get older and their tummies can handle more volume (this is for babies with gagging, vomitting, volume issues… they limit volume) we do boluses (feedings in short periods of time throughout the day).

Hypotonia – it is good to have a PT eval because they will be able to help with shoulders etc. Seems like you may also benefit from a speech pathologist?? Are you doing your therapies through EI? What state are you in?? We are lucky to eb in NY and a lot of this is covered but again, the other forum has so many people from different states, tehy can tell you how they get it covered. There are some babies in other forum with hypotonia… too many but some of them are doing great great!! It takes patience and a lot of work outside of the therapy sessions.

On the dysphasia – did they determine that with a modified barrium swallow as well?? Just to make sure that she is not aspirating? I assume you know all of this… but just in case. There is something called Vitalstim or something similar?? Again in the other board… used for babies with dysphasia… it has worked well on some cases.

Matthew also has oral motor delays – he has no clue how to chew and cannot stand textures because he is unable to move the food out of his tongue and it just makes him gag – but we are making progress. Glad to hear that your little one does not have an aversion, because you are already dealing with a lot!

Will they let you go up from 24 to 28 cal per ouce?

I know that the Gtube site can get infected… but it rarely happens… each tube has pros and cons. I do think doing an NG trial is a start… i know that it can help provide some answers… but if the tube is going to be there for more than few weeks… then the Gtube i the way to go…

Anyway – i am by no means an expert in this matter and don’t intend to give you advice… just a bit from our own experience and a bit from other mommies… but if you have more questions let me know. I know that the whole tube feeding idea can be overwhelming but my son is thriving and it is all thanks to the tube.

HUGS

[Anonymous]

Hi, We are getting our therapies through the hospital outpatient program. Her OT wants to give her a speech eval as well, but I told her that Quinn’s speech is good. I’m not sure what plan of action they are taking on that. I believe I stated this in the other post about how I had to switch her care about two months ago from another state and so things are kind of crazy right now. I wasn’t too thrilled with the idea of switching her care and tried to hold it off as long as possible. Life… it hits you at the most horrible times… She was receiving awesome care in Texas and I think it’s just transitioning is what is going to take some time and getting people to take me seriously. Right now we live in California.

Her OT here thinks that something else might be going on as to why she is burning so many calories. She doesn’t think that she is burning THAT many calories to cause her to lose weight. Maybe a little slow gain, but not as slow as she is going. She is pretty certain it is metabolic. But then again, she’s only seen her a couple of times too. Ugh… I really am so upset about the move. I just wish we could have found some answers before the move because I just feel like we are starting all over again. If we were in the other state, Quinn would have already been on the n/g tube because that was what her GI doctor was going to do before we left. And now I am changing her pediatrician because the one I picked just isn’t following through with what he says he is going to do. One minute he is worried and taking me seriously and the next he can care less about what’s going on. He won’t even send us to the GI doctor. Blah! We have an appointment tomorrow with a new pedi. I’m hoping to get some results with this one because I’m just sick of waisting my time as my daughter deteriorates right before my eyes.

Anyways, As for PT. We have an eval next month.

-Sarah

ps. I have to check out that other forum. Haven’t gotten to it yet.

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