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My daughter is 14 months old and has a G-Tube that we have to supplement her diet with through this due to lack of/loss of weight. Anyone else have a tube feeder? ↓
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| Name: momo | Date: Dec 8th, 2006 7:17 PM |
| My son is not a tube feeder anymore but was for a while when he first came home from the hospital....does she have a naso tube or a button one that goes into stomach...my son had the nasal... ↑ |
| Name: babygirlsmom1005 | Date: Dec 8th, 2006 9:28 PM |
| She had the NG tube in the NICU, it came out when she left and we were tube free for almost 7 months, and then when she had stomach surgery at 7.5 months, they put in a G-Tube (button) when they were in there. ↑ |
| Name: CJ | Date: Dec 10th, 2006 5:07 AM |
| My son had a nasal tube when he was in the NICU...but was switched to a g-tube shortly before his discharge. Several months after that the g-tube was switched to a mickey button, which he still has. He is 3 now. If you have any Q's please write them out and I'll try to answer, we have 3 years experiance dealing with feeling issues...Good Luck , CJ ↑ |
| Name: babygirlsmom1005 | Date: Dec 10th, 2006 7:13 AM |
| CJ - have you any experiance with night feeding with a pump? My daughter since her surgery has not gained any weight and has actually lost a pound in the last month and a half (surgery at 7 months, and she is 14 months old now). This will proably be in our future from what her Pedi, GI & Nutricinist say. I don't really know how that will work out with the button she has now (Microvasive Button by Boston Scientific), I have seen the Mic Keys and they look pretty sturdy as far as hooking up tubes to and the tubes not being able to pull out so eaisly...... ↑ |
| Name: CJ | Date: Dec 11th, 2006 4:09 AM |
My son is hooked up to his night time feeding pump as I am typing this to you. We started using the pump almost 2 years ago. It was a lifesaver, I still have to get up during the night but thats not to bad once you get use to it. My son was having so much reflux during the day due to larger feedings that were needed, the pump has really helped in that regard. And we have never had a mickey button pull out, ever. Although I do change the buttons as needed at home.
I use pedi-sure in the pump and it works well. Do you add DuoCal powder to your babys meals/formula to try and up her calorie intake? It might help her gain some weight. We did for a while and it worked great, I didn't like the idea of adding oil to his meals (which was also recommended to us.) Hope this helps...CJ ↑ |
| Name: babygirlsmom1005 | Date: Dec 11th, 2006 4:28 AM |
The problem we have with adding stuff to her diet (like a supplement) is she is allergic to both dairy and soy, so it is extremly hard to find these high calorie items. She is also breastfed. Our nutricinst suggested using EleCare Hypoallerginic Formula/Medical Food and after giving it to her via the tube (only 2 oz BTW), she started retching (trying to throw up but cannot due to her surgery), breathing funny, coughing, gagging, etc. I don't think she handled it well and the next day there was blood coming out of her stomach (could see in the decomp tube when "burped" her) so she went back on her ulcer meds.
I had all hopes of once she started eating solids the weight would come on - she started eating foods a month ago oraly (YAY - Big Step for her) and had only been breastfed up until then. The last weigh in she had lost a pound after 2 weeks of eating foods....our next weigh in is on the 20th......hopefully...... ↑ |
| Name: CJ | Date: Dec 12th, 2006 4:20 AM |
| I read the ingrediants on the Duocal powder and I didn't see any soy or dairy , maybe check it out. It certainly sounds like your little one had quite a reaction from the last formula that your doctor recommended. The pedi-sure that I put in my sons pump does contain some soy oil, although it is not one of the main ingredients (pedisure can be purchased at wal-mart or your local grocery store) you might want to take a look. Have you called your hospitals dietician to get any ideas, they might have a pediatric speach/feeding specialist, or possible even call the manufacturer of the feeding tube. Maybe they would have some ideas. Good Luck...CJ ↑ |
| Name: babygirlsmom1005 | Date: Dec 12th, 2006 4:49 AM |
| That was a horriable reaction. We are seeing a nutricinst throught ECI (Early Childhood Intervention). The local children's hospitals dietician had no idea about the surgery she had and very little idea about the tube, plus couldn't give me any advice on how to get her to eat (that was before she would take food oraly), so we ended up not seeing her. The one through ECI actually deals with a bunch of tube feeders and babies with the surgery she had, so I am more comfortable with her. Pedisure is a no-no, we've already been told that by the nutricinst and pedi GI. I will check out the Duocal powder and see about it. This is just so frustrating. We were never told about the lack of/loss of weight as a side effect of the surgery and before it, she had no weight gain problems (born preemie - 6 weeks early on Oct. 11th 2005 - weighed: 5 lbs 8 oz, the day of her surgery - May 24th 2006, 7 months old - weighed 18 lbs 8 oz and now at 14 months old weighs 17 lbs 9 oz.). Anyway, it is nice to speak with someone that understands!!! ↑ |
| Name: CJ | Date: Dec 13th, 2006 12:55 AM |
My son is also a preemie. He was born at 26 weeks and weighed 14 ounces....thats right, less than a pound! We have dealt with oral and sensitory issues since he was born. He is doing GREAT... he now weighs about 30lbs. And is enrolled in our schools Early Childhood program (thats the program after the child is to old for Early Childhood Intervention)
What surgery did your little one have that started all of the problems. Why did they have her get a feeding tube? CJ ↑ |
| Name: babygirlsmom1005 | Date: Dec 13th, 2006 5:53 AM |
| She had a Fundoplacation/Nissen Wrap (the took the top part of her stomach, the fundus, and wrapped it around her esphogas and sewed it together. Food can go down, air can go down, but nothing can come back up) to correct stage 4 reflux with complication of aspiration (there was stomach acid and breastmilk in her lungs). The surgen said that with babies (she was 7 months old) he always places a tube due to 90% refuse to eat afterwards, that was not the case, she nursed the next day. We originally use it to buro her with, she has horriable gas, but now having to use it for supplements. ↑ |
| Name: CJ | Date: Dec 14th, 2006 3:38 AM |
| My son had reflux but I' m sure what your daughter has/had it much worse. We seem to be though the worse of it . his reflux Now We need to get him to eat enough to sustain himself. Once he proves to us that he can do this his mickey button should be able to be removed. I so glad that your daughter will eat orally. With my son it is a struggle/challenge to get him to eat at all. Any ideas for me? ↑ |
| Name: babygirlsmom1005 | Date: Dec 15th, 2006 4:01 AM |
Well, since she only started eating a month ago, the only advice I can really give that helped us get to that point was de-sensitizing her mouth with NUK brush (a picture of one is here:http://www.superduper
inc.com/O_Pages/om320.htm)
that our Occupational Thearpist provided for us. She loves the stupid thing and will crawl around chewing on it. For the longets time if I put food on it, she would totally ignore it. I think it just clicked one day (sounds strange, but) and she took a bite off of a plastic spoon, swallowed and then another. She now only eats very little oraly and still nurses most of the time. We do not strap her in (that freaks her out with her sensory issues) and let her come to the food. I sit at the coffee table and she will cruise back and forth when she wants a bit (this can take up to a hour for 1 feeding, and then it is only a few bites). But to me, every bite is a milestone for her. ↑ |
| Name: My sunshine miracle | Date: Dec 16th, 2006 8:20 PM |
| Hello my 11 month old son is g-tube fed. He is in speech therapy now and we are praying oneday he will eat by mouth. It is very frustrating sometimes because if he could swallow he could eat , but he doesn't know how to protect his windpipe. Hang in there and trust in God!! ↑ |
| Name: CJ | Date: Dec 17th, 2006 5:02 AM |
| Danny has been throught the physical, Ocupational and speach therapys... He is eating soft foods, Mac and cheese , applesauce, pudding, small pieces of chicken, mash potatoes, but nothing that he really needs to chew much nothe that really has a crunchy or harder texture.. Somedays he eats OK and other days he eats next to nothing. We Got to put in a new mickey button today , my sister helped... all went well. CJ ↑ |
| Name: babygirlsmom1005 | Date: Dec 17th, 2006 6:23 AM |
I would be SOOOO scared to replace it at home. The tube she has is a half mushroom, so it is almost impossiable to pull it out and we don't have to worry about leaks with it. If it ever does come out, we have to go directly to the hossy to get it replaced. Kudos to you for being able to do that at home!!!
My Sunshine, aspiration is not fun!!! Madeline was aspirating, but not when she swallowed, she was aspirating from her reflux (instead of spitting it out, went into her lungs). ↑ |
| Name: hughesy | Date: Dec 21st, 2006 3:26 AM |
| My son is 2 1/2 and has NG tube in placed now for six months. He has gained five pounds and he is being weaned off the tube. He has recently been prescribed periactin ( to increase his appet.) Now he is struggling to keep the weight he has gained. He is not eating and my concern is that there are some side effects from the periactin-crying more, more needy- Is there anyone out there that has been prescribed this from their team of doctors? Any comments or suggestions are appreciated. ↑ |
| Name: jessica2006 | Date: Dec 27th, 2006 6:49 AM |
| Yes I have a 3 month old daughter who has been recently diagnosed with kidney failure and heart failure and also failure to thrive. she is just now 8 pounds 3 ounces just a little over a pound from her birth weight. She has an NG tube to supplement her feedings and they ae talking about placing a g tube but I am afraid of the surgery she had=s so many things going on already I just dont want her to go through more that what she has to. The way I look at it is if the ng tube is working why put her through a surgery to place the g tube. please info would help. I am so worry about my daughter. ↑ |
| Name: crystalritter | Date: Dec 28th, 2006 3:21 AM |
| My daughter is 13 months old and is also tube fed. We go to PT, OT, and ST every week. She was born with hypotonia and congenital myelination neuropathy. We are gradually taking away her tube feeds one at a time. She had a nissen and a mickey button put in when she was 3 wks old. ↑ |
| Name: CJ | Date: Dec 29th, 2006 1:01 PM |
| Jessica..my son had his g-tube put in when he was 4 1/2 months old, he is 3 now. He had many surgerys before this one , including heart surgery. It got to the point with NG feedings that he would reflux part/most of the feeding when the tube was taken out. After dealing with all his medical issues (he came home on 12 medications) and feeding issues I am glad that I had the g-tube put in, (was later switched to the mickey button) Good Luck CJ ↑ |
| Name: karen | Date: Jan 27th, 2011 10:14 AM |
| yes my daughter is 19 months and keeps pulling out the whole thing from her stomach,help ↑ |
| Name: jayla wilson | Date: Jan 27th, 2011 4:57 PM |
I have a tube feeder that is strictly
tube fed on a daily basis by a bolus.
He has been fed this way since the
tube was placed at a week old and
we are now 18 mo. old. He has
done well with this. We also have
other problems stemming from
him having cerebral palsy. ↑ |
| Name: jayla wilson | Date: Jan 27th, 2011 5:06 PM |
Karen -If your having trouble with the button pulling out are u getting the balloon inflated enough? U might look at the directions on your spare button and make sure that you
are inflating the button with enough saline to hold it in properly. Also do u have problems with the button leaking around it? This would be a sign of the button being under inflated. ↑ |
| Name: jcrull | Date: Nov 18th, 2011 4:29 AM |
| my son is 6 years old and we just had the g-tube put in and we had the g-tube put in july. My son was eating by mouth and feeding himself but now refuse to eat or even feed himself. He will throw and push away the food and we had test done and know he can eat just fine if he just would. Has anyone ever had this problem and what did you do about it? I need suggestions here because i don't know what else to do ↑ |
| Name: Mer29 | Date: Jan 5th, 2013 7:48 PM |
| Worried my son is going to be tube fed forever. Can anyone relate??? ↑ |
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