Obviously if your baby is not eating anything, they need a tube. But what about the in between? They are consistently taking in not enough to grow well but not enough to starve. Gavin takes in anywhere from 16-19 ounces a day. He is just about 8 and a half months. He will eat dry cereal (cheerios and kix) and will eat 1 or 2 4 oz. jars of pureed food a day. He is holding his own in the 5th percentile but dropped from the 75th in 4 months. I am assuming he will be on a med for DGE shortly to see if that improves. But long term, how is a baby that just goes on day after day not getting enough????? Is this safe for him? Do they NG tube babies like this temporarily? If his delayed emptying is the reason for the lack of eating, wouldn't putting more food directly into his stomach make him feel worse and vomit more? I worry about him going on not having enough though!

Carla,
I am sorry but I don't know a lot about tubes. But I can tell you that Parker had very slow weight gain months 6-8 and no gain months 9-14. At 9 months he was drinking 7oz milk per day if I was lucky. Even through all this, tubes were never mentioned. They always looked at him being healthy looking and good hair? Sign of a FTT. Around 13 months was when they became concerned he was now very thin, no muscle tone, arms were so skinny, and becoming listless. Then did the testing and I was put on supplements and his weight started climbing again, but we also now had the reflux under control.

I know it wasn't what you were really asking but I wanted to let you know that although it feels like a constant battle and worry, it does get better, and children do go through stages of not eating and they can get through it.

From my expieience try and get the reflux under control and they may want to eat again. Try and add calories to anything he will eat- Parker went through an all he would eat is bread stage so I plastered it with nutella-not for you though if you have nut allergies. Feed them anything they will eat, even if it is the same thing, and look at your baby, does he have energy etc.

Good luck
Rachel

Thanks...I felt pretty pathetic being the only one on here earlier, and now I see there are three! Thanks for the response. He does have energy and is pretty busy. His reflux doesn't seem to bother him, just doesn't take in enough. I assume because of the DGE. I see though that with his amount, he will be normal in 2 months. I suppose two months is not that long if he continues to develop, be a busy bee, and at least maintain??

He sure looks happy and healthy in his picture! If he is maintaining and doing what he should be doing developmentally I would not push for a tube. See how he does. If he gets formula, can you concentrate it for more calories??? I am sure some of the gals can recomend some great ways to get extra calories in him---post under questions so you get more response. we are 100% tube fed here so I am not being creative with oral foods and my oldest was always a great eater. good Luck.

Carla, Noah got his 1st g-tube 4 months after his first nissen. Knowing the GI dr. you go to persolly two thoughts come to my mind.
#1- He will push for a g-tube not an NG they are not big on them over there.
#2- He would have to be officially diagnosed Faliure to Thrive - which would be dropping dramitically on the growth charts like going from 75% to less then 5% and then he would still have to slowly be dropping off of from the 5% catagory. He wouldalso need to pretty much halt his growth in legnth as well.

I am sure once you guys see the feeding specialist and the nutrionist that they will have a good plan for him. Another kind of plus with the DGE medicines Gavin will probally get much hungier.

Here is a picture of what a dramatic change Noah went trough once he started to lose weight and became F.T.T. The picture of him in the blue outfit was taken less then 2 months before the one of him in his diaper.

Those pictures break my heart! I guess I am just trying to understand if what he is in right now is really a big deal or not. He pretty consistently takes in 16-18 ounces a day of 20 cal per ounce formula, but today only took in 11. I am perplexed because what about these days and what about the 16-18---the ped says it is not good, but is it not good enough to not do anything about it? Of course I don't want to tube him but I don't want him to be failure to thrive either. I would NG tube in at night on bad days if that was an option but it doesn't really make sense to me either. If his stomach isn't emptying, wouldn't filling it up with a tube just make him puke it up?

He isn't in the complete failure category right now so I know it isn't something I need to decide on. I just wonder if it continues like this, will he eventually get there???? I don't want him to eventually get there. I fear that if we do nothing different, he will.

I emailed Dr. G but because I am an airhead I did it Friday night at 7 on a 3 day weekend. Maybe trying a motility med will improve things. I asked him to call in one so I could report the results when we see him in 2 weeks. The nurse that reads it will probably think I am either a nurse or a nutty mom. He has never been seen there as a patient before and in this email I am making all these requests. I did put Chelsea Gorecki's brother in the subject line though! I think they all know her.

I don't know if this nutramigen is agreeing with him. After he pooped today his bottom was swollen and bloody mixed with watery poop and normal poop. There was enough blood that I wasn't sure if it came out with the poop or if it was a tear. He is taking in way less now that he is on it too and is more gassy. It says casein hydrosolate on the can---isn't that a derivative of milk too?????? I asked him about putting Gavin on neocate. Have you ever done that? Do you think it may help?

So Katy, when is your next visit at UCLA? Did Dr. G send you there or did you just tell him you were going for a 2nd opinion--do you see Dr. G still? how did you work all that out??????????????

Carla,
I think if you stay on top of things with Gavin (which you are) that he will not get to the point of F.T.T. that diagnosis carries so many scary things and a lot of scrutiny from some people in the medical field as well. Noahs been back on the Reglan even though he has a pyloraplasty for almost 3 months now and has been okay with it.
We are still with Dr.G we will be for life as Noah is considerd a lifer :) We've been with him and all of them down there for 6 years now. Dr. G. sent us to UCLA because we are facing some really big issues right now with Noah and we need as many alternatives as we can find before we make a final decision on what to do for him. Noah is missing an average of 3 days a week at school and his ability to eat by mouth is getting less and less as the days go by. He also is not sleeping through the night anymore. It is oh so very frustrating especially that the wrap has failed us so very soon after surgey. (we so shouldn't have used a different surgeon this time) we are only 8 months out from his last surgery.

This gives me great perspective, thanks:-D . Do you think I am okay in concluding that it is okay for now to not expect him to take in the normal amount because his emptying is slow, and just focus more on making sure he maintains (at least) so that the tube feeding never becomes an issue?

Addressing the emptying with meds and working with a dietician and OT I hope will improve things, but if they do not make much difference (I have heard this is common), do you think it is okay for him to go on through the infant months without the normal intake if he maintains his place on the growth chart, even if it is low?

I am sorry Noah and you are dealing with this. Chelsea 1st fundo went bad that quickly, because her 2nd was 8 months later. That was one of the hardest years we ever have and you are living it in chronic repeat mode. I am so sorry and I hope something will finally help long enough to make a significant difference for the better!

I may have already asked you this, but do the docs at UCLA have access to Domperidone? Dr. G. doesn't, right?

Maybe you could switch him to either a feed on demand schedule or incorporate smaller meals for him through out the day maybe offer him something every 2 hours as opposed to 4 ? I would hold off on any supplemental feeding choices until the situation became a dire one. Also, Dr. G does not do Domperidone but he still sometimes do the cipriside (sp?) he had a patient have heart trouble son it so he is still a bit wary about it but if it came down to it he might use it. UCLA uses all kinds of meds depending on the kid and the situation.

Katy, I thought your attitude in your last post was totally correct. The past history with your daughter may also make you want to stress a bit more. But you are taking all the right steps and I think that you will be able to get this feeding under control. I have a totally different situation to Noah, but I can tell you that a baby who at one stage who eats and drinks practically nothing can move on and start eating again and start to thrive- I have seen it with Parker- he is like a totally different boy now.
Good Luck
Rachel

I do feed on demand, and I do offer every 2 hours....so it appears that I am doing what I can. He is loving avocado spread on crackers right now and I started putting flax oil in his bottle. It is fattening (good omega 3 fats) and relieves constipation. I figured if he loves food so much, I would take that avenue with getting more fat and calories in him. I may try neocate still, the nutramigen is okay but it has been a few days only. I hope to talk to the doc on Tuesday....