Anyone else have babies/kids with NG or G tubes? - Mothering Forums

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#1 of 14 Old 05-30-2004, 07:46 PM - Thread Starter
 
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Just wanting to find some support. My baby's 4 mos. old and has had an NG tube for the last month. She developed feeding aversion due to GERD, was dignosed with failure to thrive, and still needs me to top off the feedings. Sometimes she'll guzzle down 4 oz, sometimes will not eat for days at a time. Typically she'll take 2-3 oz. per feeding and need me to top it off through the tube. Sometimes she vomits it right back up again. She's under the care of a good Ped. GI but she's very conservative and has the "let's wait and see what happens before we act" policy. I'm tired of waiting, but know it's necessary. KWIM?

I'm tired of the stares. I used to get comments like, "What a beautiful baby, what big brown eyes!" Now I get silent stares or "What's wrong with your baby?" Someone actually asked me that a couple weeks ago.

THanks for listening.

Darshani

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#2 of 14 Old 05-30-2004, 08:15 PM
 
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Hang in there, it doesn't last forever. My son had an NG tube for a month after he got out of the hospital (just shy of 4 months after birth) - I remember hating the way people looked at him, but I was also THRILLED that he was home with me - so I couldn't complain much.

It sounds like your daughter is actually doing really well - more than half her food w/o the tube! I'd say you probably don't have too much longer to go with it. There are a lot of ignorant people out there, but I'd just ignore them and remember that you are actually lucky that your daughter is recovering and thriving now. The tube won't be a permanent part of your lives.

Anyone who would ask "what's wrong with your baby?" does not deserve a response - that's just beyond rude and insensitive.
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#3 of 14 Old 05-30-2004, 09:55 PM
 
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Originally Posted by woobysma
Anyone who would ask "what's wrong with your baby?" does not deserve a response - that's just beyond rude and insensitive.
sometimes though, a person might ask because their baby had similar problems... isn't it better for a curious person to ask than to just rudely stare? IF they are asking out of concern & not nosiness??

darshani, i did not know your baby had an ng tube. i hope it is not too long before she is off of it, & i am sure she IS beautiful. i wish people could look past differences & just see the gorgeous happy baby that you have!

jenny
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#4 of 14 Old 05-30-2004, 10:06 PM - Thread Starter
 
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Originally Posted by woobysma
It sounds like your daughter is actually doing really well - more than half her food w/o the tube! I'd say you probably don't have too much longer to go with it. There are a lot of ignorant people out there, but I'd just ignore them and remember that you are actually lucky that your daughter is recovering and thriving now. The tube won't be a permanent part of your lives.
Thanks for that upbeat note from someone who's now come out on the other side! So maybe someday I'll be telling someone the same thing, talking about it past-tense. I guess I should look at it like a glass half-full instead of half-empty. Some days are rough and I forget that.

Darshani

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#5 of 14 Old 05-30-2004, 10:08 PM - Thread Starter
 
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Originally Posted by joesmom
sometimes though, a person might ask because their baby had similar problems... isn't it better for a curious person to ask than to just rudely stare? IF they are asking out of concern & not nosiness??

darshani, i did not know your baby had an ng tube. i hope it is not too long before she is off of it, & i am sure she IS beautiful. i wish people could look past differences & just see the gorgeous happy baby that you have!

jenny
Thanks! That comment just came across as being very rude. There are better ways to phrase it if they are curious. I like it best when the kids ask why she has a tube because it's totally innocent. Some adults do come right up and talk to her and make her giggle and smile, and then they will sometimes tell me that their child/grandchild/neighbor had a tube, and it opens up discussion.

Darshani

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#6 of 14 Old 05-31-2004, 12:04 AM
 
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I think you're in the Jan/Feb 04 thread, yes? I mentioned my ds (my toddler) had a ng tube. If you have any questions or want any suggestiosn, PM me. He had one for a long time so we've learned a lot. It will get better though. We were lucky and didn't get many rude comments or states...or we were just oblivious. *shurg* I did appreciate little kids ask cuz it gave me an opportunity to teach them about diversity and acceptance!
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#7 of 14 Old 05-31-2004, 05:08 PM
 
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Is she medicated at all? If she's still refusing feeds she needs stronger meds. GERD is painful and I know my dd refused feeds often till she was properly medicated. She's almost 4 now and still requires meds or she stops eating again. If she's not medicated and you dont want to go that route a number of parents have had success with slippy elm tea. btw, ng tubes are known to casue feeding issues and oral aversion so the tube could end up causing you more grief in the long run.

Seriously?
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#8 of 14 Old 06-01-2004, 02:24 AM - Thread Starter
 
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Originally Posted by Satori
Is she medicated at all? If she's still refusing feeds she needs stronger meds. GERD is painful and I know my dd refused feeds often till she was properly medicated. She's almost 4 now and still requires meds or she stops eating again. If she's not medicated and you dont want to go that route a number of parents have had success with slippy elm tea. btw, ng tubes are known to casue feeding issues and oral aversion so the tube could end up causing you more grief in the long run.
You know, you have some good points. The thing is she was eating poorly before tube and I haven't seen much difference before and after the placement. But I'll bring that up to her doctor next time.

I think we do have to change the meds or something though. She's been pretty unhappy the last 2 days, and then today I gave her 1 cc of Mylanta in each bottle and she was happy again. This was my test in the first place to see if she had GERD vs. something else when I brought her to the ped for it. I don't want to give Mylanta long-term though.

Darshani

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#9 of 14 Old 06-01-2004, 02:58 AM
 
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Actually they usually start you off on Zantac 2x a day, it didn't work for us and we needed Prilosec and even then we still had bad days. Now we control the reflux mostly through diet and were heading down the path of total elemental formula (I actually made ice cream with it today that she loved) but if it keeps her out of pain I'm willing to do it.

There is one thing that concerns me, your ped placed an ng tube which is pretty invasive and uncomfortable before trying meds? (tubing is usually the last step after all meds have failed) Also, an ng tube can actually make reflux worse by holding open the flap to the stomach.

Seriously?
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#10 of 14 Old 06-01-2004, 10:31 PM
 
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Hi there jsut wanted to give you a big hug and offer whatever support I can. My daughter had plenty of OG and NG tubes. Now she has had a nissan and has a g-button. PM me if I can help in any way!!! It's tough making that decision.
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#11 of 14 Old 06-02-2004, 09:55 PM
 
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My ds has a g-tube and nissen. He's had it since he was 3 weeks old and has never taken anything by mouth. He was born with no oral reflexes. It was a hard choice to make, but for us it really was our best option. I look forward to the day that it is out though!!
I'm sorry that you have to go through this.
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#12 of 14 Old 06-03-2004, 12:52 AM
 
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My dd had an ng tube placed @ age 9 months due to failure to thrive from kidney failure. She had the ng tube for a year and then had a g-tube placed. She's done really well and has come a long, long way with eating. She'll probably still need her g-tube for years to come because she doesn't drink well, but we are hopeful that one day she'll be tube-free! Though we struggled a lot with the choices, we are ultimately glad for the tube because it gave her the chance to grow big enough for her kidney transplant!
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#13 of 14 Old 06-03-2004, 10:09 AM - Thread Starter
 
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Originally Posted by snuggly mama
My dd had an ng tube placed @ age 9 months due to failure to thrive from kidney failure. She had the ng tube for a year and then had a g-tube placed. She's done really well and has come a long, long way with eating. She'll probably still need her g-tube for years to come because she doesn't drink well, but we are hopeful that one day she'll be tube-free! Though we struggled a lot with the choices, we are ultimately glad for the tube because it gave her the chance to grow big enough for her kidney transplant!
Wow what a tough road for you! Did she get the transplant yet?

My baby's on Tagament and the Ped GI just said to increase her dose because she's bigger now. Hope that does the trick. Also scheduled her for an endoscopy next week to see if it's anything physical. I did take the tube out for almost 24 hours and she didn't vomit, but she wasn't eating well either. Only took 17 oz. during that time and should be taking close to 30. Started to have darker urine so I put it back in again.

There's a small concern that Nitara is secreting too much of a certain kidney hormone, I think it's called renalin. May or may not be related to her eating problems, but she had a very high bp in the hospital off and on. Up to 128! Normal is in the 90's. She's seeing a nephrologist tomorrow to get that checked out. High bp early in life runs in the family. Her kidneys checked out fine on an u/s and her labwork, all but that one hormone level.

So hopefully we'll get to the bottom of this, but I'm going to bring up the gtube possibility because no matter how well I tape the tube she mananges to either cough/sneeze it out or catch her finger in that part that comes right out of the nostril and pulls it out. I have discovered some clear tatoo bandaids by Nexcare that seem to hold that part down better, and adds some cuteness to the tube, too. Right now she has a dalmation on her cheek!

Thanks again for the support and ideas.

Darshani

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#14 of 14 Old 06-03-2004, 12:29 PM
 
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Yes, our dd had her kidney transplant when she was 16 months old. I got to be her donor, which was really special for me. She's been doing really well since then, and we recently passed her 2-yr. "kidney birthday". When she was in kidney failure, she was very, very sick -- her bp without meds was 250/150. She is truly a miracle girl.

The decision to put her ng tube in was really hard for me since I just so badly wanted to keep nursing her and hope she grew, but it was obvious that she just couldn't gain weight without help. At the time, she needed to gain at least 4 pounds before they could consider a transplant. I just never imagined she'd have the darn tube for a year! We had planned to switch to a g-tube sooner, but couldn't because of risk of infection after the transplant. In all, she had the ng tube for a year. She also pulled it out all the time and she ended up with rashes on her face from all the tape/bandaids we used to keep it on. The g-tube comes with its own set of issues, but for her its the best solution. It helps us make sure she gets all her medications and stays hydrated, which is critical for the health of her kidney. Now she calls it her "button" and she's happy to show it to anyone who asks!

Hang in there. I know it's a tough road. You're doing a great job for your baby!
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