feeding tube help!!!

[gabbysmom04]

My 3 month old DS was born with a cleft lip and palate and has trouble gaining weight. He is now only 10.1 lbs He was 6.15 when he was born. He is right now not even on the growth chart. I am afraid that our next step is going to be getting a feeding tube. Does anyone have any experience with feeding tubes in babies? I have been trying so hard to get him to gain weight but it seems I am losing the battle. I want to do what is best for him but I hate the idea of a feeding tube. I am not sure if this was the right board to post this?

 

[Cheshire Figment]

Have you talked to his doctor? What does the doctor suggest? There are others on this board who may have experience, but at this point I think you need professional medical advice.

 

[mrsmom]

i sent you a pm
kim

 

[SueM in MN]

I posted on your other thread on the Family board. Glad to see you came over here.
My DD never had an issue with eating, so I have no personal experience with feeding tubes, but I have experience of talking with other parents and also as in indirect care giver (nurse working in home care/public health advising parents and Infection Control Nurse). The two concerns I saw people usually have were:
1) Being afraid of the care.
2) Feeling like getting the feeding tube was giving up and their child would never feed orally once they started with the tube.

For the care, feeding tubes are actually easy to care for. There are a lot of things to learn right away, but once you have those down, feeding tubes are very easy to use/care for. When you are not using it, the feeding tube is pretty much invisible.

For the "giving up" feeling. Many people I talked to felt that way, but once they had the feeding tube, they felt good about it and most actually wished they had done it sooner. Instead of having to worry about how much the child was eating, they could concentrate on making oral feedings a good experience. That will help in the long run when the child "graduates" to eating more by mouth.

Is it the doctor or dietician who is suggesting the feeding tube? Perhaps they could give you some names of people in your area in similar situation to talk to?
Have I hit the things that concern you or do you have other concerns that we can help with?

 

[SueOKW]

With our DS we fed him for the longest time, and it was such a struggle to get him to gain weight etc... finally it was determined that he was aspirating too much and we went with the tube. (He was 13 when we put it in, has spastic quad CP.)

As SueM says - we were sorry we didn't put it in earlier.. we thought he would never be able to taste food again - but he can - custard consistency. He's gained weight and is much MUCH happier. SueM is exactly right in her post above.

So - - I can't really answer your question, except to say it isn't as scary as it may appear.

 

[debbiemomto4]

My ds had a feeding tube-a g-tube when he was 2 during his cancer treatment. He had a tumor in his neck so he couldn't swallow and had many issues. The feeding tube was a God sent. We were able like someone else said to concentrate on just the things he felt like eating. The calories he got through his feeding tube. We had no difficulty with it except when his counts(white lood cells dropped) not a problem with cleft palate. I was on a message board through ivillage for parents of kids with feeding tubes. It was helpful. If you have other questions please pm me. Hope all goes well.
Debbie

 

[biancamouse]

Not much to add, but my son is on a feeding tube. When he was placed on it, it was because he was not getting enough calories and was aspirating frequently. He still ate his favorite foods at the time, like cereals, crackers, anything like that consistency, but the feeding tube helped him gain weight and in turn he had more strength and felt better. Good luck

 

[joanchris]

Hi, I know it must be scary thinking of a gtube in an infant. My daughter, now 10 has had one since she was 3 1/2. There is a listserv:

http://listserv.syr.edu/scripts/wa.exe?SUBED1=gtube&A=1

where you can go subscribe and ask questions there. I know there are other parents who have infants or whose children started a gtube as infants there. Also, there are members who still subscribe whose children have outgrown the gtube and they stay on to help others like you.

For us a gtube was fabulous. However for my daughter, it will be a lifelong necessity, it makes it easier I suppose in some ways that way.

As has been said similarly in other posts, many parents are afraid of giving up, have problems accepting that their child needs the help of the gtube, if only temporarily. The benefits of the gtube are immesurable. My daughter actually ate better, at least for a while, after we got the tube for her, since we could turn off the pressure sometimes and just eat for enjoyment, no worries if she didn't eat everything. The health benefits of being fully hydrated and nourished made her much stronger. The procedure was fairly simple, and the tube itself is very simple to care for. As your child gets older, if he still needs the tube, you can introduce babyfood thru it as you would otherwise, he can eat what he wants and can orally in a reasonable amount of time, then the rest can just go through the tube! I found we spent hours at the table trying to get my daughter to eat, I think part of her refusal to eat was that she was bored of sitting there so long for each meal.

Sorry if I've rambled, check out the listserv, the people there are really helpful and friendly. I joined it before my daughter got her gtube and it helped me immensely!

 

[Mickey'snewestfan]

My DS (now almost 7) had a g-tube placed at 9 months. Before the tube he ate well but had constant respiratory infections and pneumonia that we just couldn't get a handle on. After a battery of testing they discovered that the problems were due to aspiration, and we went with the feeding tube. The difference in his health with the tube was amazing!

Over the next two years, Nick gradually outgrew his swallowing problems. Reintroducing foods went easily and by the age of 2 1/2 he was able to get everything he needed by mouth. We kept the tube in for a few more months as a safeguard, and removed it the week of his third birthday. Now at six he's above average for both height and weight, and eats a wide variety of foods. More importantly he's very healthy, and is doing wonderfully in all areas -- very active, plays lots of sports, near the top of his class at school, and HAPPY (things we had concerns about, simply because as an infant he was sick so often that he didn't have the energy to learn and grow). Except for some mild asthma and his "second belly button" there isn't really any way you'd know what he went through.

I won't tell you it was all easy, he wasn't allowed to eat for the first year or so (something you won't deal with) and denying him food when he clearly wanted it was hard, as was finding a day care program and preschool that could accomodate him was hard. But there's no doubt in my mind that it was the right decision and that we wouldn't be where we are without the tube.

 

[gabbysmom04]

Thank you to everyone for posting! we were first told about the g-tube by our DS's surgeon. He had to have surgery when he was two days old because of a perferated bowel inutero. At our follow up he suggested a feeding tube to help him gain weight. His reg doc thought that we should try to get him to a better weight with formula and adding oil to it. I just got back from DSs doc and we are going to try oil and adding powdered formula to his ready made to increase the calaries. We are going to do this for two weeks with weight checks once a week. If that fails then she thinks a feeding tube will be the next step. I know a tube is not the worst thing in the world but I hate the thought of it. I do feel like I am failing my son. I hate the thought of putting him through anymore pain. Well I am just being silly with all this self pity. Again thank you for everyones help.

 

[minkydog]

I know a tube is not the worst thing in the world but I hate the thought of it. I do feel like I am failing my son. I hate the thought of putting him through anymore pain. Well I am just being silly with all this self pity. Again thank you for everyones help.

You're not failing your son and this is not your fault. He just needs some help and you're trying to find him the best care. Bravo! Every parent who has dealt with a child with disabilities or birth defects has been through similar feelings. It's okay to vent about it--we understand. You don't have to explain it to us, we've been there

I've got a new motto for you "Whatever it takes"

 

[MommytoMJM]

I sent you a PM too... MJ has had hers since she was 15 months old...

 

[debbiemomto4]

I emailed you too. !
Where in NY?

 

[SueM in MN]

You're not failing your son and this is not your fault. He just needs some help and you're trying to find him the best care. Bravo! Every parent who has dealt with a child with disabilities or birth defects has been through similar feelings. It's okay to vent about it--we understand. You don't have to explain it to us, we've been there

I've got a new motto for you "Whatever it takes"

Agree totally!

 

[sejejoemmiev]

My daughter had alot of trouble gaining weight like your son. She was born at 6lbs 5 oz We could never get her to eat more than 1/2 oz. to 1 oz. at a time She was only eating 10-12 oz. a day. We started with increasing her calories in her formula from 24 to 26 then to 28 cal per oz. The VNA came for weight checks every other day. She has a heart defect and low muscle tone and the combination made it difficult to keep the stamina up for eating. It would take 1 1/2 hours to eat 1oz. She was burning more calories trying to eat than she was taking in. I kept a food diary and kept a close record of every drop she took in and every diaper. It became so exhausting trying to keep her alive. At 7 weeks old she had a NG tube placed to supplement her feedings. (She was still at her birth weight.) We would offer her a 2 oz bottle every 3 hours and let her eat for 1/2 hour only. Whatever was left in her bottle was put down her NG tube. Eventually she started taking less and less until she started refusing oral feedings. The NG tube can make it uncomfortable to swallow. 2 1/2 months later it became clear that this was a long term battle and she had a G-tube placed. The G-tube has been wonderful. I wish we could have avoided the NG tube. Maybe she would still be taking a bottle then. The G-tube leaves your mouth free to still enjoy oral feedings. She is now 8 months old and thriving!!!! She is up to 14 lbs 9oz. Teaching her to eat again is the huge struggle. She has OT come twice a week to work on feeding. The bottle will never happen again. We have accepted that. We have moved to baby food and introducing a cup. This will be a long term struggle. She does not know how to eat. This is difficult to teach. But with her emerging personality comes an intrest in what others are doing and that includes eating. Boy does she love to watch us eat!! My advice to you is to get the G-tube, avoid the NG tube if they let you. (They didn't let me. They said it would be crazy to do surgery for a g-tube unless we had proven it was a long term thing) AND MOST IMPORTANTLY ....... KEEP FEEDING HIM WITH THE BOTTLE BEFORE EVERY G _ TUBE FEEDING WHether he wants to or not. BE PERSISTENT. IF you aren't it just makes the road ahead a more difficult struggle. I made the mistake of letting her refuse. I wish I had been more persistent. Good Luck. A G-tube is not the end of the world it just makes for a happier and healthier baby. And less stress for you!!! Jessica

 

[eternaldisneyfan]

I got a g tube (Mic-key) when I was 16 b/c of trouble swallowing and eating enough. It also helped beef me up for a big surgery. Later my swallowing got worse and my gastroperesis (paralyzed/very inactive stomach muscles) got really bad and the g-tube was fed down to my jejunum in Interventional Radiology. I was the first person at UCSF to get the Mic-Key two port gj tube. It only requires one stoma (surgical opening). The feeding tube has been great for me! I am on 24 hour feeds and use a Flexiflo feeding pump. I can't eat any food by mouth anymore due to swallowing/aspiration and gastroperesis. It has been an adjustment since I ate until I was 16.

If you do end up getting a tube, get the Mic-Key style. Very low profile and easy to change. A plus for feeding tubes is that you can put medicine through them. The feeding tube definitely helped energy wise

I suggest adding poi to the formula. We have been adding poi to my feeding formula and it has helped with weight and digestive problems (I also use some IV nutrition). You have to cook the poi thin and boil it to get it formula consistency. Poi is a traditional Hawaiin food that many people there use as baby food.

Good luck

Christamae

 

[MissingMickey]

Our ds is 25 months and has a gtube. We LOVE it. It has taken the pressure of all of us so that feeding isn't a battle. Ng tube for 6 months b/c surgeon really hoped to avoid gtube placement b/c of mixed up anatomy. Couldn't avoid and was the very best decision we could have made. He eats orally now and has for some time, but we supplement b/c his digestive tract is a bit wacky and he can't take enough calories in during the day for needed growth. The first 2 years are so critical for growth and development. Get the nutrition in however you can. There is plenty of time to work on oral motor skills. Don't give up on the skills though - gtubes are often very temporary. We have weaned down to only 8-11 oz of formula by tube a day (overnight) and hope to completely tube wean in the next 12-18 months.

I sent you a PM about a tubefeeding forum you might find helpful. Check it out. It really isn't so bad. And it really might be for a short time.