Reasons for tube feeding

[Anonymous]

If you all don’t mind sharing,

What were the reasons your child was put on tube feeding and how old?

[Anonymous]

We only had to Ng tube feed but it lasted about 2 months due to failure to thrive/ no wt gain or very minimal. Also my son didn’t take well to the taste of Neocate and refused it.

We had issues from birth, but due to doctor denial (my opinion) and not getting the right answers, he was 4 mo before we ever got into the hospital and that is where they basically said this is the only answer that will get a healthy baby the fastest.

[Anonymous]

I guess I could go further in my explanation in saying he was BF from birth and was MSPI, couldn’t seem to gain wt, reflux got really bad and it was the combo that ended us in the hospital. Very fussy baby, thrashing with feedings and uncomfortable and unconsolable after, mucousy and greasy looking stools, 4-6 stools a day, non stop projectile vomit.

[Anonymous]

Jedd’s NG feeding tube was originally palced due to FTT and hi scongenitial heart defect.

the night is was placed we realized somethign was seriously worng!!!! He vomitted continuosly th eentire night!!!! From that point on we pretty much didn’t get any sleep.

He weighed about 7.5lbs when it was placed. He was born on Oct 20tha nd had itt palced on Jan 6th. He was 5lbs 15ox at birth…so you can see we really needed it badly.

By 6 months old Jedd only weighed 12lbs. The minimum weight limit they wanted us to be for his open heart surgery.

Honestly, without the tube my son woudl have died!!! I has been both a blessign and a curse together but it is somethign I would do all over again if need be.

Feel free to ask me any other ??? I am not sure but I don’t think there ar emany tube feeders here. I know another board where ther eare litterally 100’s of tube feeders of all sorts of tubes…NG, G, GJ, And J feeds.

On Aug 10th, 2007 we had a G-tube palced for permant feedinig. By that point he had been NG fed 100% for MONTHS!!!! There was no point in continuing to do the NG tube…it was a PITA!!!!!

[Anonymous]

We managed to avoid tube feeding, but it was a threat that was always lurking in the background. For us, the consideration was not due to inadequate weight gain, but due to her severe feeding aversion. She hated feeding and eating and it was an impossible chore that we dedicated our entire lives to for two years. The sleep feeding and challenges associated with the refusal to eat and food hating were intense, and many times I felt like I couldn’t continue. We had dry spells where I could hardly get her to take anything in, and we were worried about malnutrition and dehydration. During those times, the threat of the tube was the most severe.

[Anonymous]

Take this with a grain of salt form someone who has been in the tube feeding workd for well over a year and a half OKAY….

At t his point in a child’s life if they are suggesting a feeidng tube..they have good reason for it….

Good nutrition in the first 2-3 years of a child’s growth and development is the #1 concern!!!!! It is during this time that brain and eye development NEED the nutrition in order to develop properly. That may be why Dr are talking about a tube.

It is NOT good for a child’s body at a young age to go through periods where it is receiving in-adequate nurishment.

A feeding tube can also take the “pressure” off an already TENSE and STRESFUL situation. You will know 100% that once a tube is placed the child WILL recieve the proper nutrition their body needs.

I litterally wept th enight our NG tube was palced. Jedd was about 10 weeks old and I had NEVER seen his belly rounded from being full of food. His tiny little belly was plump for the first time in his life!!!!!

But…..like I said, take that with a grain of salt…

Keep in mind a feeding tube is NOT the end of the road, it is a beginning…..

I have litterall y tube fed Jedd EVERYWHERE and opended him up and medicated him everywhere. He has “eaten” at…WalMart, Taget, Babies R Us, grocery stores, church, restaurant, Bush Gardens, traveling, Malls, ……ECT. I mean everywhere……Youname it and Jedd has “eaten” there..LOL

Life did not/does not end when you become a tube feeder.

I would not fight it, I would give in and take the pressure off….

Just my 2 cents.

[Anonymous]

I would agree with Jessica, although our time with ng was short, I thought it was going to be horrible and it was b/c ng gets pulled out all the time, but the miracle turnaroud it did for our son was worth it. We did everything we normally did once we got into a routine. And he got so much stronger in such a short period b/c he was getting nutrition.

[Anonymous]

We haven’t tube fed since by some miracle Paige has gained weight well on Neocate alone. We were getting close when she was 3 months old and started to develop a feeding aversion, but thankfully the switch to Neocate formula and starting a good dose of Prevacid made a world of difference.

But I just wanted to let you know that there is another mom on here named Leo (posts under kendramom) who’s daughter is about 2 years old who is on a G-tube as well. Just in case she doesn’t notice this thread, I’m sure you could PM her if you want any more info as well.

[Anonymous]

MFPIx2 wrote: We haven’t tube fed since by some miracle Paige has gained weight well on Neocate alone. We were getting close when she was 3 months old and started to develop a feeding aversion, but thankfully the switch to Neocate formula and starting a good dose of Prevacid made a world of difference.

But I just wanted to let you know that there is another mom on here named Leo (posts under kendramom) who’s daughter is about 2 years old who is on a G-tube as well. Just in case she doesn’t notice this thread, I’m sure you could PM her if you want any more info as well.

I know Leo from another board…she is VERY sweet. I think she has been real real busy with the kids becasue it is summer. She is also right now (I think) on a missions trip out of town…I forgot where to….

G;ad to read the short term success stories with NG tubes, that is just wonderful.

We were lucky Jedd never pulled his out and I never misplaced it when putting it down a true miracle since we had it for 8.5 months!!!!

I was the QUEEN at taping that hting where it belonged!!!!!!

[Anonymous]

Thanks for sharing everyone. After reading Jessica’s post above I began to come to terms with the possibility of the tube and then I felt relief realizing I would no longer have to fight, stress, and worry about every feeding, count calories, and feel disappointed after weight checks.

We had our endoscopy today and it showed nothing abnormal. We have to wait for the biopsies Friday for the definitive results. I am relieved that everything looks good but worried that we are never going to have answers and things will never get better.

Here is the odd thing that my very well respectied ped GI told us after the test that I question and would need to get a second opinion on. He wants to try one more thing,,,,,,switching to PEDIASURE or WHOLE MILK. My son was diagnosed with milk and soy allergy (blood in sttol, mucous, eczema, weight loss..TOTAL DISASTER) so this really confused me. He said many children have begun to outgrow there allergy at Thomas’ age and he may want to try it if the tests came out okay on Friday. STRANGE so I wil get a second opinion.

For those of yu who actually read this far (sorry so long) Thanks for listening, this is a very hard time in my family’s life and it seems to help venting to people who understand as most people have no clue what we are going through.

[Anonymous]

OMGosh DON’T do milk!!!!!!! LOL But really I would get a 2nd opnion about the milk thing really. It would scar th edickens out of me to do it after having htat kind of a reaction in the past.

You can also add benecal or duocal or polycose for added calories. That way you can boost the clas and possibly avoid the tube…..just a thought.

YOu can also add non salte dbutter, olive oil or flax seed oils to food as well. ALL of those add MANT good fats and clas.

You may also want to work with early interventin (EI) to get hlep to overcome any feeding issues. they hav eowkred wonders for Jedd.

Glad I hlep you to not be so afraid of a tube…..le tme know if you ahv eany other ????

my e-mail is…

[email protected]

[Anonymous]

Ok.. I am not on here hardly at all anymore so I am sure that you have no idea who I am, but I will give you my experience anyway.

Sammie was 15 mos old when she had her Mic-Key put in she had it at the same time as her Nissen. IT SAVED HER LIFE!!! She was 15 lbs 8 oz @15mos old. She had been in and out of the hospital several time for dehydration for the simple fact that she refused to eat. The feeding tube made life a little less stressful for us. I knew she was getting enough nutrition and it allowed us to focus on the rest of what was going on medically with her.

She got her tube out today and I am so nervous about it! It becomes your “safety net”

Most children that have tubes placed do not have them for as long as Samantha had hers. They do definitely lower the stress about if you child is getting enough calories.

Hope that I did not ramble too much… lol

[Anonymous]

Janice, great news that Samantha got her tube out today!

My 2 cents- if your child needs a tube, then they need a tube. I think that there are benefits and struggles that go along with both sides. I am happy that we did not need one in the end, but it was a very hard road. And we were lucky that Hailey gained weight by some miracle. If you decide to get a feeding tube, then do it knowing that you’re doing the best you can and trying to do the best for your baby. I got a couple of opinions who all told us we were not in dire straights which helped me to push through, but I was always worried, and we were lucky that we had the luxury of time as she was not FTT.

s&h’s mum2008-07-31 18:51:59

[Anonymous]

Janice wrote: Ok.. I am not on here hardly at all anymore so I am sure that you have no idea who I am, but I will give you my experience anyway.

Sammie was 15 mos old when she had her Mic-Key put in she had it at the same time as her Nissen. IT SAVED HER LIFE!!! She was 15 lbs 8 oz @15mos old. She had been in and out of the hospital several time for dehydration for the simple fact that she refused to eat. The feeding tube made life a little less stressful for us. I knew she was getting enough nutrition and it allowed us to focus on the rest of what was going on medically with her.

She got her tube out today and I am so nervous about it! It becomes your “safety net”

Most children that have tubes placed do not have them for as long as Samantha had hers. They do definitely lower the stress about if you child is getting enough calories.

Hope that I did not ramble too much… lol

WHOOHOO WTG Samantha and Mommy!!!! I bet that was lots of hard work.

Jedd had his NG tube placed in Jan of 2007 about the 4th or 5th I think…He got his MicKey on Qug. 9th of 2007. We still ahve it.

Right now he is only taking meds in it though so we have gone form 100% tube fed at Thanskgiving to 100% oral right now!!!!!

[Anonymous]

Tommysmommy wrote: Thanks for sharing everyone. After reading Jessica’s post above I began to come to terms with the possibility of the tube and then I felt relief realizing I would no longer have to fight, stress, and worry about every feeding, count calories, and feel disappointed after weight checks.

Hi there,

before Kendra’s tube, our life was miserable! we live our days fighting Kendra refusal to eat for nearly eight months and would not want any one to go through that misery, if there is a better way. The stress was HUGEEEEEEEEEEE! just like you, the dissapoinmnet at every weight check was more than i can bare. I cried like i never had before.

Yes, there is some adjustments to make with a feeding tube, specially the NG tube, but it really helped Kendra and save me and my family from so much distress.

Kendra got her tube due to feeding adversion (from severe reflux), which was causing failiure to thrive. i was trying to feed her ALL DAY AND ALL NIGHT. i looked like a living dead (seriously) and my poor baby was behind wit her milestones due to that stress we were going through.

We have had the tube for 1.5 years and it hasn’t been too bad. She is on the 60% per height and 40% per weight right now (she was on the 3% per height and close to being of the chart per weight at 7 months old). She goes to feeding therapy every week and she munches on food and drinks water. We are also going to an intensive feeding program in January.

Our lives is much better now (busy, but better). Like Jessica, we have fed her every where (we have a feeding pump for night feeds, but you might not need it). Yes, good nutrition should be the number one concerned.

Kendra had an NG tube for 6 weeks, then we had a G-Tube placed. Some chidren will start eating better after the pressure of feeding them eases up (beacuse of the feeding tube). Your child might not need a g-tube after all (just the ng tube).

Also, i would not do milk, if you have those kind of problems you mentioned. Kendra started eating on her own 3 weeks after her NG tube, but due to food allergies (that we didn’t know about ) she refused to eat completely. You see, i was giving her food that was making her sick and she of course started associating food with her tummy problems.

Once we removed the food we thought were a problem, she started trying food again.

i wish you the best of luck with your decision. Please pm me if want to talk more about it; i’ll be happy to listen.

P.S. Hey Jessica, didn’t know you were here

Hey Sheri, i hope Page is doing better

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