Feeding tubes

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Latest reply from KevinO

(4 posts) (4 people)

Feeding tubes

Posted 3 months ago by Leonie

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Leonie said 3 months ago

I have put Sabrina on the waiting list for a g tube. The surgeon said she is a good candidate for the surgery. The thing is sometimes Sabrina will eat and drink, but the problem is that sometimes she wont. It can be very stressful (as I'm sure you all know) at the end of the day when I know she has only taken about 500ml. I'm still making my decision about it and I can take her off the waiting list if I change my mind. I would be interested in hearing your experiences.
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Laurie said 3 months ago

Kaylee was exactly like that~ she was eating fine most days, but then she would struggle to take in even 3 oz a day. I had an appt for the tube, canceled it, thinking she was doing fine, then rescheduled it, only to have it placed in an emergency situation a week earlier than planned because she fell sick and dehyrated quickly. The specialists at our children's hospital told me that all children have a sucking reflex at birth. Most babies develop/learn a purposeful suck about a month later; Kaylee lost her reflex but never learned the purposeful suck~ hence, the poor oral intake most days.

I, too, was nervous about the surgery, but I can tell you now that it is the BEST THING I ever did for my baby. She has gained weight and is stronger than ever. She gets her medication through her tube, so I never have to panic if she spits out a little of her medication and wonder if she will seize as a result. Even Tylenol works so much faster, keeping us out of the hospital when prior to the tube, we'd be admitted for days. She has been healthier overall, and I've seen great developmental strides since getting it last May.

Is it a miracle worker? Yes...to me, it is. I do not regret getting it for a second-- except to say that I wish I had gotten it sooner.
Hope this helps.
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oliviagrace said 3 months ago

I am not posting to tell you not to get a g-tube or to get a g-tube, just sharing my experience. Olivia left the hospital being tube feed. I was also told not to feed her, as she did not have a coordinated suck swallow pattern. I, however, tried often to bottle feed her, paying close attention to her swallow so she could develop what she was lacking and after about a month we took the tube out. She has been tube free since. Feeding her is a stressful time sometimes. I have been on a see saw myself about have a tube in place (wouldn't it be much easier to feed her). There are days she eats a lot and days she doesn't want any of it. But aren't typical kids like that also. I am constantly counting her calorie intake each day to make sure she gets enough in a day. She is still bottle fed and eats pureed baby food. She loves her baby food, not too keen on her bottle. And we supplement, she gets microlipid for extra calories and butter in her food. We tried to make higher calorie formula but she intakes less. I am not against a g-tube. My child continues to have a coordinated suck swallow pattern, and has age appropriate weight gain. If for any reason she "forgot" how to purposefully swallow, or continued to lose weight (she lost 6ounces when she was sick) than I would definately consider g-tube. Olivia is 8 months old 15 lbs and 25.5 inches long. She eats between 14-22 ounces of formula a day and 6-10 ounces of pureed baby food. I know it is a hard decision. You will make the right one for your child.
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KevinO said 3 months ago

Kendall got a feeding tube before she was diagnosed and we were force feeding her because we didnt know what else to do. Her life was changed once she got the tube... And so was ours. We would have done it sooner had we known the difference it made in our life. The best thing about it is that it's better to have it than to not, since you can use it as a supplement if the child is eating well. The benefits are countless really. Having it for times when Kendall is sick and not wanting to eat can come in handy as well. It's also makes giving her medication so much easier.