feeding tube ?

[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.

 

[mrsmom]

I sent you a pm.
Kim

 

[minkydog]

I have no experience with feeding tubes as a mom,but as a NICU nurse I saw them plenty. My youngest child had feeding problems and there was a point at which we were advised that a feeding tube might become necessary. Thankfully, we didn't have to do that, but I totally understand the feelings of grief and fear that go along with it. I can tell you, from a professional perspective, that feeding tubes can be literally life-saving. They aren't hard to care for and the ones inserted through the abdomen are not noticeable to others. For a child who cannot take enough nutrition to grow properly, it's the only alternative.

 

[mrsmom]

I agree the feeding tube was the best thing, as it did save my baby's life.i was scared to death but it really wasn't as bad as i thought. I even took her to disney with it and i had two other children at the time.ans now it was removed at 1 1/2 she says she is special because she has two belly buttons.
Kim

 

[SueM in MN]

Follow the link in my signature to disABILITIES. You should be able to get some answers there from some other people who have/kids have feeding tubes.

My DD doesn't have any problems with eating, but other parents of special needs kids I know agonized over the idea of getting a feeding tube. Like you, they didn't like the idea either, but once they got one, they felt free in a way.

Most of them continued with oral feedings, but the feedings became much more pleasant because the child didn't need them for nourishment. Instead of worrying about getting every drop in, they could concentrate on making the feeding a positive experience. Most of the people I know whose kids have feeding tubes said they actually wished they had done it sooner. Some kids end up keeping the tube for a long time, some only a short time as they learn to feed orally better.

 

[Mom to Jordan]

I am sorry for all your concerns rights now. I do not have experernce with the feeding tubes but my DS was extremly difficult to bottle feed. He was premature and was gavage feed for the first two months and never really developed a good sucking reflex. It was not so much he could not as with your little one, but he would not. It took a hour to get a couple ounces in him and we had to feed him every two hours. He was still 4 1/2 pounds at 3 months. What finally happen with him was that we started him on ceral VERY early. He was 6 months but just two months adjusted ages. We mixed it with formual but breast milk is better if you are doing that and used a spoon to feed him. He did so much better as it is a different sensation than sucking. He started to grow and was up to 17 pounds by a year old. Our doctor oked this so you might want to run it by her. We thought at one point we might come home with a feeding tube and while we were scared we like your knew it would be the best for our little one.
BTW-- That child is now 13 and I can not keep enough food in the house for him!!

Jordans' mom

 

[mom x4 grandma x4]

Hello,
I do not have a child with a feeding tube, i do have a niece with one and it saved her life. I have a feeding tube myself, it is the only way I can eat. The surgery wasnt as bad as most. yes I was sore,but not as bad as you would think. The tube is easy to care for and easy to feed with. A simple on in a child is much simplier because they are flat and do not sick out so the child will not pull on it. Just remember, no one can tell you what is best for your child, it is up to you. But the tube is temporary and can do nothing but inprove the childs health. Most can just be removed in the doctors office with no pain, unless a shot to numb where they may want to put i stitch or clamp til it heals. To me this is much better than the alternative of lack of nutrition. I have been there, not getting enough nutrition can do permanent damage to your organs that will bother you for a life time. If it were my child, (I have 4) I would do it, for their sake. That's what parents are for, to make those tough decisions for the best interests of their child, unfortuatly there are no easy decisions. I wish you all the best and good health to your child.
My tube saved me i would be dead if I didnt have it.
It's not as bad as it sounds to have one.
mom x4,grandma x4

 

[ckmommy]

One of my twins had to have a feeding tube. He was 11 pounds at 8 months old (7.0 pounds at birth). Both of the twins were put in the hospital at 8 months for failure to thrive. Once in the hospital, and running tons of tests, they had to put a tube in the smallest twin. He had it inserted through his nose. He had a drip of very high calorie and fat formula flowing all night, but only at night. He had the tube taped onto his face 24/7, but only use tube fed while he slept. I was nursing both of them, and had to stop using my milk as their primary food source. They both had to have the high calorie formula after their breast milk, and at every feeding. The twin that was on the feeding tube was only on it for about 6 weeks. I did have a nurse (paid for by insurance) come in once a week to help with taping the tube on his face and answering questions. She also came out if the baby pulled the tube out--I was not going to re-insert it myself--although, I am sure I would have learned to if he would have had to have it for a long period of time. I look back at pictures and wonder how I thought they looked healthy. They were both so tiny!! They are now three, and I have to lock the pantry door now because they eat all the time. The twin that was on the tube is still small for his age, but i think he is just a slight boy. The other twins who was small, but not as small as his twin, has caught up with the growth charts and is at the 50%ile!!

Good Luck to you!!

 

[luvsmickeymouse]

I hope this helps. We adopted our youngest son from The Phillipines and he was born with a cleft lip and palate. He came home at 11 months weighing just 10 lbs. He hadn't had any surgery. What we did was feed him with a regular bottle with the nipple slit larger. We bought cross-cut nipples and enlarged the opening. Worked wonders. I learned this trick from my oldest son born in Korea with a cleft lip and palate. That is how they fed him in Korea. We didn't need any feeding tubes with either son. They are now 18 and 15 and doing great.

 

[luvsmickeymouse]

I forgot to say that we put a little rice baby cereal in the bottle. He loved it. I remember being so afraid when he came home because I had never seen such a small 11 month old. He worn newborn size diapers. He hadn't eaten much so I started him on foods as you would a baby that hasn't tried different foods. Within 3 weeks he was like a different baby.

 

[North of 49]

We have been where you are five years ago. Our daughter was born in Oct '00 at a healthy 8+ lbs. But despite constant feeding, couldn't gain much weight, and we went from 95% weight to 5% weight in three months. Starting having seizures at two months. Jan '01 was just a mess of constant hospital appointments. Finally at the end of January, exactly five years ago, we put her in hospital for tests and they tube fed her via the nose for two weeks. Her weight exploded on the tube feeding. Just before we got out of hospital, they gave us a G-tube to the stomach. She still has it.

Five years later, our daughter is 95% weight and over 50 lbs, and very healthy. She is severly disabled - I describe her development as that of a three month old - but a very beautiful girl who is in kindergarten. We have had many, many test, but no diagnosis. Still have some siezures. She is a real joy for all.

As far as the tube feeding goes - it is great. Without it, she would have died. Tube feeding is much easier and WAY less stress than bottle feeding if you are having feeding problems. The operation to insert the tube only took 20 minutes. Never had a problem with the tube site. She had only regular Carnation Good Start formula for the first two years, and now has a similar formula that is much like infant formula. Hard to believe you can get to 50 lbs on pure formula, but she did. We have to be careful not to over feed her -she is big enough already, especially when you have to lift and carry her everywhere.

Have to run. Leave for Disney in 10 hours. Daughter is not coming - she is in a care facility for 2 weeks. Its a break for us.

K.

 

[rhiannonwales]

I have never had a child with a feeding tube but i wanted to send some good vibes your way.......
MY DD was born preemie and small (i had toxemia) and even now at 2 years 1 month, only weighs 20 lbs. She is in the 10th percentile... 90% of girls her age are larger. Still wears infant clothes.Its very hard to watch you child not thriving like other babies.But it will all work out.MY DD is ths light of my life, and though tiny in stature more than makes up for it with her fiery never give in spirit.

Just curious, do you plan on surgery for your little one? I've been told ( though i may be misinformed ) that its a fairly simple surgery.Ive seen it done on tv for a charity that does it overseas.Not trying to pry, i was just wondering if perhaps your child need the feeding tube to big/strong enough to undergo such a procedure.

Hugs,
Sherrie

 

[Mom to Jordan]

What CKmommy is describing sounds like a gavage tube. They are considered short term but reguire no surgical intervention. We had one for two months in ICU but just excaped comming home on one. This might would be an option if surgery for the cleft lip is comming quite soon.


rhinnonwhales,
Tha is almost exactly what DS weighted at 2 years. I think he was right UNDER twenty pounds. If I remember right he did not even hit the charts to about that time. Anyway he stared growing like crazy about age 5 and completly skipped a size of clothes!!!
AT 13 he is taller than me and weights about 145 lbs!!!!
They do grow. It just takes time and somtimes a little intervention.

 

[MayMom]

I teach in a special needs classroom. One of my former students had a port and we fed him Ensure through it 2 times daily. It was on his lower left side and was not noticible to anyone, unless you knew it was there. Because he was developmentally delayed, he would pick at it and pull at it every so often and we would have to watch him very closely. It was an easy access port for his medications as well as exrta fluids (he had a kidney problem and had to have certain fluids periodically). I wish you lots of luck and prayers for your journey with your sweet baby.....

 

[gabbysmom04]

I want to thank everyone for writing. It is nice to know that I am not alone. Although I am sorry for everyone who has to go through this. We are going to try to get him to gain weight by mouth for a few more weeks. If things don't go well then we will have to get the tube. I know that it is not as bad as I think. Dominic has already had 1 surgery at two days old and will have three more before his first birthday. I pray that number will not become a total of five. mom x4, I wish I was still going on the Dec 2 cruise. I switched over to the 10 night and now can't go on that either. Maybe next year my family can make it on DCL.