venting!!!

[Anonymous]

ndrose wrote:

Sorry, I don’t have much advice but I wanted to assure you that you are not imagining things. My refluxers didn’t care if they ever ate either and nobody understood that. I’d wait 5 or 6 hours and they still would eat nothing or stop at an ounce or two. Only moms with reflux babies can understand this.

I wish you the best with her doctor visit today. Please let us know how it goes.

Oh my i couln’t agree more. that is exactly the way it is. nobody understand. Iam sorry you and your baby are going through this. Please know your feelings are well founded. Hugs

[Anonymous]

Hailey could go for half a day without eating when she was younger and then when I presented her with the bottle, she would still refuse and cry. As an infant, she NEVER cried to indicate she was hungry. Everyone- including a pediatric feeding psychiatrist- told us to leave her until she was hungry. One day I waited over 10 hours without offering her food because she didn’t indicate she was hungry. When I presented her with the bottle at that point, she still refused to take it. Her ped, who understood that she had a feeding aversion, told us to go to the ER for hydration.

People who have never dealt with a feeding aversion are offering advice that is true of healthy normal children- that they will self regulate to eat when they’re hungry. Children who are sick or who have had traumatic events interrupt the normal feeding process may avoid eating to avoid unpleasantness, and so they can’t be trusted to self-regulate.

The problem with this, I’ve learned, is that the truth of the situation is the same for both healthy babies and babies with feeding aversions- you can’t MAKE a child eat if they don’t want to. Believe me, I’ve done everything in my power to will Hailey to eat. Our first GI told us that she felt that Hailey needed a feeding tube b/c she didn’t want to eat. We thought that we’d be better off if we kept up with sleep feeding, so we went for another opinion. Our next two GIs told us that we should just keep up with what we were doing, and that she wouldn’t need a tube. Well that was the worst piece of advice I ever got!

In hindsight, if I could go back in time knowing what I know now, I would have gone for the tube right away. If she wouldn’t eat, and the meds wouldn’t correct this, then I would have stopped trying so hard to feed her and let her go for the tube. The reason I say this is because trying to sleep feed a child who didn’t want to eat, and trying to get her to eat solids now when she doesn’t want to eat, has been the most awful struggle. It’s made our whole life revolve around feeding her, and it’s disrupted our family in countless ways.

I believe that life would have been much easier if we would have had a tube. Yes, scary initially the way learning anything new is, but it would have given us freedom to enjoy life with Hailey without focussing everything on the feeding.

I post on another forum and there are a lot of moms with tube fed babies over there. Maybe they can give you a more realistic picture of what it’s like. But the funny thing is that I avoided the tube b/c I thought that it would give her more sensory issues, and that she wouldn’t start to eat until much later. The reality from what I’ve seen on that site, is that Hailey is NO further ahead from not having a tube, and the kids with the tubes have much more flexibility in trying new things during feeding therapy. For them, they can wean tube feeds slowly and then reintroduce them when they have to instead of the situation we’re in, which is horrific.

I don’t mean to come off sounding like the tube is the way to go for everyone. I think it’s an individual decision for each child. That being said, I first would try to get her on a high dose of PPI and see if that can turn things around for her. It has helped some babies with feeding problems start to eat again. I would also make sure that she has a good GI, if she doesn’t already, and get the testing done to make sure that there’s nothing physical causing her to not want to eat.

Good luck and HUGS. Keep us posted.

BTW, the other site is http://www.parent-2-parent.com/forum .

s&h’s mum2007-2-20 12:12:17

[Anonymous]

thank- you for giving an honest opioion, I feel like i am giving up wanting to go to the tube feeding, but the frustration has to be felt by my baby and that pressure is not fair to her. We to have been willing her to eat and I feel like it is a big power struggle with a 4 month old. the tube feeding would birng a peace of mind to me, I think and like you said once you get used to it, I think that it would just be healthier. I also think it would help our bonding as well. thanks for all the support, and I will keep you posted.

She lost 3oz but the doctor would like to give the reglan a chance to work and we go for a check up tommorrow and then decide what to do from there.

[Anonymous]

There’s no reason to feel guilty, or to feel like you’re giving up if you decide to go to a feeding tube. I think you should do whatever you feel is best for Chloe and for you. It might be easier for you to teach her to eat without the pressure and worry of getting food down her for weight gain. Good luck with your decision. And good luck at the check up tomorrow. Keep us posted!

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