Matthewmama RE: NG tube

[Anonymous]

We are really struggling with Taylor and her lack of eatting, she just does not suck and swallow very well and ends up screaming her head off because she is so hungry and cannot coordinate the eatting or she is in pain, I just don’t know anymore. I just wanted to know how the decision came to be that Matthew has NG tube feedings?

[Anonymous]

Sue

I am sorry to hear about Taylor. With Matthew, he was fine the first couple of months after he was born. He was in pain but was gaining weight. He would go on hunger strikes but would always start eating after a couple of days. Then after one of those strikes, he just would not start again and there was no way we could keep him hydrated. That is when the ped put in the tube (he did not really give us a choice). Also, sometimes, it is important, if the babies are not gaining properly, to make sure that they are digesting etc the food… so they put in the NG and make sure that by feeding them sufficient food, they are gaining weight (ie there is nothing else underlying the no eating or no gaining).

Having been there…. i would have put in the tube MUCH EARLIER. Wee were struggling to make Matthew eat and did not realise what problems we were causing long term. We were stressed during the feedings, he was in pain, he was crying etc etc.

It is a tough decision, but the tube has helped SO MUCH. We have been with the NG for a long time, and are now considering the Gtube, but the NG is a perfect solution for the hard days at the beginning. It is overwhelming at the beginning but babies adapt to so may things. We still use the smallest one (6FR) and Matthew will not cry sometimes when we put it in. If he pulls it, it is painless for him, just slides right out. For the face… if they are considering it, I don’t know what tape they use here but we have found out that the one thing that does not irritate Matthew’s face is called Tegaderm. They have them at the hospital.

Sorry, don’t want to overwhelm you either… but knowing all i know about feeding aversions now, i would have had Matthew on the tube since he was a couple of months old and since his first hunger strike. Our current GI here was amazed that when Matthew was first hospitalised in November, they did not offer the tube and they kept pushing the bottle and even the meds by the mouth… she is convinced it was the wrong decision

Email me if you need anything else..

thaisanddave@hotmail.com

I am sorry you are going through this.

[Anonymous]

I just wanted to agree with what Thais said about doing it early…with Andrew, he was on the NG for his first 4 weeks while in the NICU, with gradually increasing oral feeds, which got gradually worse when we were home…he was back in the hospital a few times and got NG feeds there, and we came home with the tube for a couple of months (when he was between 2 and 4 months) and I feel like that really got him over the “hump”…it seems like you get in this horrible cycle of miserable hungry baby, miserable feeds, miserable mommy…the nurses really stressed with me that if we got his nutritional status up with the ng supplements and took the feding pressure off, he would feel better overall, and things would gradually get better as he grew, and they were right…it was no magic bullet, and it came with its own issues, but it is a lot easier when they are really little, and we were able to stop the ng by 4 months or so, when he could take enough combined formula and solids by mouth…we had a lot of help from a feeding team too. I’m so sorry you are going thru this again – at least you know that this time you will all survive this (I had 2 as well) but it is so hard. Hang in there!

[Anonymous]

Hi everyone, this is my first post so I hope it works! My daughter- Emilie-Rose- is 15 months old and was diagnosed with severe silent reflux when she was 8 months (she never vomited until 2 months ago). She was put on losec and it helped almost imediately but she failed to ‘thrive’ (only put on 1kg in 7 months). She completely starved herself yet again when she hit 1 year and was hospitalised and given a NGT. She has now been on the tube for 2 months and put on nearly 3 kg- horray!!!

I’m writting to you for advice on how to ‘wean’ her off the tube and back onto solids. She is still on the losec but is vomitting on average once a day. Her DR’s and feeding team say she has a severe behavioural association with food and pain. I feel like I am trying everything under the sun but she still purses her lips, shakes her head and absolutely refuses to eat or drink milk from a cup/bottle. Some things we have tried is making ‘eating fun’, whereby we ‘feed’ her animals in the highchair etc; offering varied foods-different colours, textures etc….

She was a breast feed bub until 13 months, I accept that she may never take milk from a cup etc and may only get her calcium/protein etc from solids…. but I really feel STUCK and completely overwhelmed because I dont see any light at the end of the tunnel.

Does anyone have any tips to get a toddler with reflux to eat? Do I have to accept that she might be on this tube for a long time or even resort to surgery?

I welcome your ideas.

Cheers,

sophie2006-5-10 20:16:30

[Anonymous]

Sophie….

Sorry I don’t have any advice as I am fortunate to have not had to deal with severe feeding aversions..only reflux. I just wanted to welcome you and let you know that you will likely get many more responses if you post your own NEW TOPIC. Just go back into the HELP section and click on a topic, and then click on NEW TOPIC, instead of Post Reply. More helpful moms will see your post that way.

(It took me a few days to figure that out, so don’t feel bad!)

Again, welcome and I hope you find some help here.

[Anonymous]

Sophie

Saw your post… welcome and thanks for sharing your story… Matthew has been on a tube for 5 months maybe and i guess when you say surgery, are you considering the Gtube and maybe a fundo??

So good to see them put on weight! Good thing about that is that you at least know that there is nothing else going on with her metabolism… i thank god for that everyday with MAtthew.

We believe Matthew also has a bad association with food… and it is really more common than you may think. There are other moms here who have babies with Gtubes or NG tubes and there are others who are struggling to feed their babies… so you are not alone!

So…first of all…i think you need to figure out why she is still throwing up. I think that will be key once you decide to start the weaning. Are you giving her bolus feeds, continous feeds?? Are you pushing her to eat and she gets nervous and throws up? Matthew did that for a while and now i know when to stop. Is it just her system ie reflux related? Is it behavioral?… Matthew’s new thing… i start going down teh stairs at night to put him to bed and he throws up dinner… oh well. Once you know there is nothing wrong medically, then i would think about weaning… i have a feeling though that she is going to need diary in some form, as you said, so she needs to eat yogurt, cheese etcc etc… how much is she taking by mouth?

Sorry about all the questions… i just have read and spoken to so many people about this… this is just some of my thoughts… i would hope you feeding team has their own ideas?? Different places have different protocols… ie some require that you are able to bolus feed a certain amount over a time period, to eat a certain amount of food by mouth etc…

I wonder about weaning too… right now, we have not start the weaning process because we need to put on some more weight into Matthew and make sure he takes sufficient diary, which he does not. Some people say that it takes as long as 2 weeks for babies to get hungry… so they lose some weight at the beginning. Also, is she taking the textures that she should be at 15months old? I assume she eats purees and finger foods and she does drink other stuff, especially water, from a cup? I hear drinikning water is important during weaning process

There is a great forum with a lot of info on weaning and people have diaries about how they are doing it… ie some cut out feedings during the day and do continous at night and cut by say 10% calories, others do 20% etc… others cut bolus during the day… there are tons of theories and different things have worked for different people. The forum is http://www.parent-2-parent.com/forum

Have you tried an appetite stimulant? Like periactin? SOme GI do not give it out until babies are 2 years old, but mine said she would do it at one year old… some people have had great success.

Sorry about all questions and if i sounded confusing. Janice may see this post and post soon… her daughter Samantha has a tube and they are trying to wean her so they are giving her continous feeds at night but nothing during the day and they are giving her periactin and i (hope) it is working!

Finally, wanted to say that all i know is weaning is a LONG process… hopefully we will be able to provide some support, either in this forum or the otehr one…

sorry for rambling… trying to calm my little one while i write this as i know you are in Australia and probably need something now and not tomorrow!

[Anonymous]

Dear ladies,

thankyou so much for your kind words of wisdom! I will attempt to write an ‘offical’ post next time but knowing my poor computing skills, it might take me a couple of days!

Thais, thankyou for your questions and answers! I am certain that the vomiting is due to the reflux. The gastroenterologist told me that even on the losec, she will contine to vomit feeds but to not be disuaded. (Im sure thats a little easier for him to say when he doesnt wake up at 3am to a screaming bub obvoiusly in pain, with the tube hanging out her mouth!)

At present we have cut her elecare feeds down form 4x 200ml bolous feeds during the day and 1x 400ml continous o/nite to 3 bolous feeds at meal times (150ml/30mins) and a dream feed at 10pm. However she is still completely refusing all solids- i mean EVERYTHING (except water and occasionally some juice). The plus is that she has gained weight on the NGT and that she now will drink water. However, she doesnt seem to associate hunger with food. The twist in all this is that she used to eat well (on and off) between the age of 9-12 months but has somehow forgotten how to chew/swallow etc.

The weblink was very useful- thanks again. I realise now that there is no magic formula to wean them off the tube. Everyone seems to be employing different strategies. And I guess thats my answer- make sure she has an ample weight buffer, anticipate some initial weight loss, go slow, be adaptive but most importantly- be patient! I think this is the hardest lesson for me because I hate this situation we are in. I hate the fact that my darling, precious little girl has a tube in her nose. I hate the fact that everyone stares at her and some strangers even have the audacity to walk up to us and as ‘whats wrong with her’. I hate the fact that I feel like we cant leave the house for long because she is due for her next feed. I hate the fact (theres a lot of hate here i realise!) that I cant control this. That I cant make her pick up the food from her plate and eat it.

I guess the biggest leasson for me besides patience, is to reduce my expectations and to stop wanting her to be a ‘normal’ child. It is just so very hard.

It seems that you guys in the States may have a more coordinated healthcare approach than here in Oz. My peadatrician/gastr/dietican/ocopational thereapist do not speak to each other and therefore do not provide a holistic and coordinated response. So I have started to take steps to address that, hope it works!

Sorry if I sound a little frustrated and annoyed but no one else seems to really understand because they dont know what we are going through.

Anyway, thanks again for your kind words and I will write another post down the track.

Take care and hope Matthew is having a good day today, so hopefully that will translate into you having a good day too!

Cheers from downunder.

[Anonymous]

Sophie

I can understand all you are going through. I just want to say that it gets better, even with the tube!! I do have the nights when the tube is hanging out his mouth and it sucks… and the strangers coming up to me is something you have to live with too… but we feed Matthew through the tube everywhere! I mean the mall, the zoo, in the car… we have become so mobile.

On the vomitting – if it is reflux, then nothing is going to stop it and if it is not necessary, always better to be surgery free. Hopefully it will be all gone soon!

Have you considered a Gtube? We are considering it. Matthew eats solids and takes formula but not enough and we know that it is going to be along process. The Gtube will be easier to manage, will not come out in the middle of the night, you will not have to put it back in and it is so much more portable i think. ALso, for me, trying to feed Matthew with one hand, making sure he is distracted and making sure he is not pulling his tube is becoming an increasingly difficult task.

It si good she is taking water!! She needs to remember her skills before you attempt weaning… and in my opinion and from what i have read, she needs to take some solids. On the other website, people are so much more experienced than i can be. Americhanchai (Darshani) has a great website about food strategies and how to get her daughter to eat… she is now almost tube weaned!! it has taken 1 year but they are there. She has all the tips from her OT etc and other people have them too… take a look.

Unfortunately, you are going to need a lot of patience. There is no magic formula. I pray everyday that Matthew’s only problem is really just feeding and there is nothign else we are not seeing. You have to stop thnking that you do not have a normal child, because you do! They are just very smart little people who know that food used to hurt, so why eat and suffer… and they need your strength and your support to get through this — they cannot do it on their own and they cannot be pushed to do it either. I used to want the tube out (i still do believe me) but now i know we need to make sure that Matthew can eat well before that day comes. And you need to try and have a normal life… take your baby out, feed her places (if you have some help it is a bit easier).

As for the hunger cues… it happens, they lose them, but with routine and patience, they will be back. Please take some time to read some of the stories and introduce yourself on the other website… you will get tons of advice.

But right now, if i were you, i would forget about weaning. I am not sure you are there. You need to work on feeding and getting her to accept food first. I know it is hard… but it really is the first step.

It is difficult i know – i am sure it gets more difficult as the child gets older. BUT THERE ARE SUCCESS STORIES, it just takes time!!

[Anonymous]

The way things are going now, she is eatting less and less each day and crying more and more. She is not even eatting sleep feedings well at all. I think we are heading down the NG tube road, I don’t want her to develop a feeding aversion like Alexis did. I’ll have to talk to the Peds MD at our next appt June 3rd if not sooner. We saw the Peds GI yesterday and he wants her to try Neocate for 2 weeks to see if it a food intolerance and he switched her to prilosec instead. We are keeping our fingers crossed.

[Anonymous]

I am sorry to hear about Taylor not eating. Hopefully it can be solved with a couple of weeks on teh right med and Neocate…

[Anonymous]

Sophie,

I’m so sorry that your are going through this with your daughter. I have to say that as awful as reflux is, the worst thing in my opinion is the feeding aversion. My daughter is almost a year old and we have been dealing with feeding problems since she was a few weeks old. It has been a struggle. We didn’t go the route of the tube, but many days I think it would have been easier on us all. Hailey has an all out feeding aversion- bottle and solids. She will only sleep feed and even that is a struggle. It has made me a prisoner in my own home, and being trapped around her schedule has made her life dysfunctional as well. My husband always says that we live day to day on the brink of a tube. At least you know that your little girl is getting what she needs, and you can work on feeding gradually. Yes it will be a slow process, but it’s slow whether you have the tube or not, and at least you can always supplement that way. I noticed that your daughter didn’t get her tube until she was a year old? What was her feeding like before that? I’m sorry that I don’t have any real advice, but Thais has offered a lot of good advice already. I just know your frustration and fear, and hope that things steadily improve for you and your little one.

[Anonymous]

Sue,

I’m so sorry that you are having such a hard time with Taylor. I hope and pray that the neocate does the trick. Please keep us posted.

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