g tube question

[heidikk]

at what point do they start talking g-tube? I've been so afraid of it and maybe I'm borrowing trouble again. If he's on the chart even if very low? If he's gaining but not as fast as they want? Dekorrah's appt. is tomorrow and I'm doing my usual day before panicking.

 

[Aboveallislove]

They started talking G-tube for us when DS was losing and down to around 20%. Knowing what I know now, if they are eating well and not otherwise having lots of lung issues, and your family is on lower curve (as I think you said), I wouldn't do it. I think the doctors think that is the "easy answer" to get someone to 50%. If they aren't gaining, I think the first thing to discuss is why and that means adjusting enzymes and acid reflux meds and addressing any GI issues first. From all you said, your DS is eating well and is stable and is "normally" lower on the curve. Does this make sense? I'm not saying there isn't a time and place for G tubes, but I think the doctors would rather put one in than address the other problems or worry about weight.

 

[heidikk]

Dekorrah isn't losing, but is only just barely up from last month and they already weren't happy last month. I agree that I don't think we should do it. I'm so afraid they'll bring it up and start pushing for it though. I hate feeling so afraid.

 

[heidikk]

I gave him a bottle of his goats milk today. Even though I know it was hurting his tummy and I had a good reason to stop. Even though it's not likely to make that much difference on the scale by tomorrow anyway. I'm insane. This is insane.

 

[Aboveallislove]

Yup, after a year when they stop naked weights I just dress bulky to add a pound and get them off our case.

 

[heidikk]

can. not. wait!

 

[Aboveallislove]

Have you considered pumping and adding formula to supplement? Is he on acid reflux stuff? That makes the enzymes more effective. Also, I'd note that given his bout with constipation which gave him several days of low intake, his weight gain is good, if the doctors make an issue. Or just listen, nod and then keep feeding following his cue. Or better yet ask in your sweetest naive voice, "don't you think given our family size and that our other 9 children were always on the 20-30% growth curve that this is his natural weight?" And when they come back with the 50% blah, blah, blah, repeat sweet naive voice with "hmm, well how do you suggest we try to force DS to eat more?" Augh. Hang in there. Also, fyi: Our son's weight was like 13%ish percent first appointment and low for first year and is at 50% now. And it only drops when his tummy is backed-up for most of the time between weigh-ins.

 

[heidikk]

I've been considering the pump more and more throughout this month. I didn't think I'd be able to produce enough milk for regular feedings and then extras in between to add stuff to, but now that I've seen that I can feed him a full feeding every single hour, I think it may be possible after all. He's not taking anything for acid reflux. Since he doesn't spit up, I think it's assumed that any reflux he might have isn't an issue. Reading Little Lab's posts this morning, perhaps I should rethink that.

 

[Aboveallislove]

our ds had horrible reflux and constant spitting up so it was easy, but id discuss at next appt snd ask if they think it would help make enyzmes more effective. and if he has digestive issues with tummy avhes ask re elecare VANILLA for supplementing to add to pump because it is pre digested. also you van rent high power pumps t hospitals i think and if you try to do at end of feedings youll like
y get all the high calorie stuff and maybe get your producrion up to without hampering how much you have nextfeeding. just some thoughts off what you can try...dont force preassure with extra bottle though oe he might start fighting and drink less. hugs and prayers,

love

 

[Dowling]

Been In your shoes. I did a lot of research and g tube aren't even a guaranteed weight booster. Pregestimil formula is amazing at adding weight . I pumped and mixed it with breast milk. Boob juice is 20 calories / ounce, with the pregestimil I could make each ounce 28 calories. Times tha by her eating 6 times a day , and I basically added an extra feelings worth of calories. I make very skinny babies, so I always said no! She is in the 76th now, but we had MONTHS of either 1/2 oz gain or exactly the same. You'll get there. I agree though that reflux meds may help absorb more enzymes !!! Hope this helps, you're doing great

 

[Dowling]

Feedings!!! Not feelings

 

[heidikk]

well we survived. no mention of g-tube praise the Lord, although they were definitely discontent with his weight gain. are reflux meds the same thing as acid inhibitors? dr. mentioned trying that if things don't change.

 

[Aboveallislove]

Zantac and Prilosac/Prevacid are the two types. They work differently. Ds is on both but usually they start with just Zantac. Pretty sure they are acid inhibitors. Cf blocks the pancreas natural bicarbonate and too much acid enzymes don't work we'll. check out cff.org on gi stuff primer. Just learned few months ago re that.

 

[dmarie781]

I kept putting off having my daughter get a g tube and regret it to this day. She just never could gain wait and I didn't realize how important the weight gain had to lung function. I guess everyone is different but it is a lifesaver for us!