[athikers]

Our little Teeter is like our own little roller coaster in a cute little chubby cheek package. We've been trying and failing at discontinuing his g-tube for a couple months now. The first time we tried it was an obvious SERIOUS failure within the first 24 hours. This second time we tried for two weeks and I really, REALLY thought he might make it. Then, he was weighed and he's losing weight! I don't know whether I want to cry or scream. He is a very very thin little boy and cannot afford to lose any weight... as he continues to get taller and is not gaining weight fast enough. It is so challenging.

I feel like we are in an impossible situation. He CAN eat and enjoys eating when he's hungry enough. And, he will guzzle his bottle when he's hungry enough. The issue is, he would be dangerously dehydrated AND way too skinny if we only fed him when he was hungry enough to eat cooperatively. I don't know for sure, but I think this is due to his nissen fundo surgery. It is very uncomfortable for him to be full. VERY uncomfortable. So it is hard for us to get him to eat enough for his stomach to stretch and grow. As it is, we feed him every two hours from 5 am to 9 pm alternating bottle and solids.

I'm at a loss. We see his ped in just over a month. I don't feel like she can really 'solve' this for us.

There's not really a question in there anywhere, I justed needed to vent.

[kelceesmom]

I am sorry for what you have to go thru. It sounds like many days are hard to deal with. I hope things turn around for you.

[SuzBerg]

Ath - I don't have a lot of advice to offer. As you know I was rather unsuccessful at getting our little E (and I mean little) to gain weight for a long time. I think the hardest part is figuring out why the kiddo isn't gaining weight. For 4 years we didn't really know what was causing E's failure to thrive. Was it that she didn't like to eat? was it that she didn't eat enough? was it that her heart just didn't function well enough for her to gain weight? was it the low oxygen levels? or was it just that she had been failure to thrive for so long that her body really didn't know how to grow? I think it was a combination of all these things.

I will tell you what has helped us (don't know if any of this would work with Teeter - just my experience). First getting her heart/lungs working better and the oxygen levels up has made a HUGE difference (she's gained over 8 pounds since her surgery 4 months ago). Second she is on an appetite stimulant (megestrol acetate) that makes her hungry and third she finally ENJOYS eating. Also we added a calorie enhancer called Benecalorie (I think it's something crazy like 400 calories per 1/2 oz) to her Pediasure. I don't know if it's recommended for infants but I would definatley ask his pediatrician about adding it to his formula.

Just a few ideas of what has worked for us. Of course it took me almost 4 years to get to this point of her gaining weight, so I might not be the best one to give advice .

Hugs to you my friend, I KNOW how frustrating this is. Best Wishes - Suz

[athikers]

Thanks Suz. I do plan to ask about the benecalorie next visit. We've been pushing pushing pushing food for a couple days now... and the more we push the more he does NOT want to eat. In fact, after consuming almost nothing but his bottles today (ideally he eats food four times as well as drinking/tubing his bottles) he even threw up some of the little bit of food he DID eat for good measure. I want to cry... and find a low volume high calorie diet so I can be mommy to a little boy that LIKES eating.

[SuzBerg]

ath - it's been a couple of weeks since you last posted about this, just wondering how Teeter is doing with the eating now? I hope things are going okay - let us know