[athikers]

Teeter had been eating very very very very well... I was getting so optimistic we could schedule his tube removal. Now, over the last few days his eating has tanked again. Completely. I will be very surprised if he's even able to maintain his weight with what he's taking in as he's refusing solids almost completely and will not take his bottle at all! He took it last night, but other than that he's been eating very poorly. Two steps forward... one and half steps back. He has his 15 month appointment this week.

[devildogwife]

I'm dealing with some feeding problems too.

I have to weigh Cameron every morning. For 5 days in a row, he'd gain, lose what he gained, gain it back, lose, etc. He has a bad MSPI plus corn and his formula is supplemented with oil. He rarely eats enough to maintain his weight. He only had his NG tube for a week at home, and then we pulled it. I am SO hoping he won't need it again at night. I want to pull my hair out.

I'm sorry things are discouraging right now. Feeding issues are just so hard. I feel like it's two steps forward and a step back every single day.

[SuzBerg]

I think of all the issues we've E in the last 4 years the feeding issues are the hardest. Let's face it, it totally sucks when your kid doesn't want to eat (or your baby in your cases ath and ddw ). E has finally been putting on weight for the first time (about 8-9 lbs since her surgery in Oct) AND when I took her to the pediatrician for her check up (same pediatrician that said we would probably have to put in a feeding tube 4 months ago), she said we needed to be careful because we did NOT want Em to be obese as a teenager. WHAT ? She only weighs 37 pounds and she is 6 1/2 years old.

I decided to not freak-out, ignore that comment and just make sure Em continues to eat healthy meals and snacks. If she had said she was worried about Em's heart with all the sudden weight game I would have been fine with that. But let me tell you my fondest dream is that Em becomes a chubby teenager. THAT would be a miracle.

I just wanted to let you guys know I understand your frustration with the feeding issues. If you have any specific questions I'll try to help though I'm obviously not an expert on this.

I also wanted to remind y'all (this is something a friend always says to me). "2 steps forward and one step back is still progress"!

[athikers]

DDW, we are also adding oil to Teeter's diet, in his meats. I plan to ask his ped on Thursday what our other options are. He has a g-tube and he's still BARELY gaining even when we supplement with the tube. Its a difficult game because he's a refluxer and if he's OVER fed then he throws it all up, obviously not good. I don't want him on that tube forever, but because of his bronchopulmonary dysplasia he's appetite and volume tolerance are horrible AND he needs more calories than the average kid cause he's working so hard just to breathe.

Anyway, it is continuouly frustrating, but good to know I'm not alone in my frustration. And, I agree about feeding being the hardest. When Teeter was placed I was TERRIFIED of his O2 needs. I quickly learned his oxygen and breathing treatments are NOTHING, so easy. His feeding is so constant and so much work! I guess I should be thankful we got him over his sensory stuff and his not gaging and throwing up every textured thing we put in his mouth

Thanks for the support. Speaking of Teeter his pulse oximeter tells me he's awake, gotta go.

[Lylac]

Abbie will eat and suck enough milk, to sustain her now..and thats it. But because of her medical problems she'll never be able to gain to a healthy weight w/out tube feeding. I'm so looking forward to seeing my baby gain weight and strength. She'll be two next Thursday and she can't hold her head up longer than 2 seconds (if that).

So I see the tube, as my friend and I'm expecting a very long friendship at that.

[OakShannon]

Athikers,

What did you do to help Teeter get over his sensory issues? The little boy that is being placed with us has that issue and I know an OT is supposedly working with him on it. He's really tiny and he won't eat anything that has any texture. Only creamy foods or liquids. (He'll be 2 this month.)

Shannon

[athikers]

Well, Teeter's eating apparently was just a pre-cursor to bigger and better things. He is extremely sick and I thought for sure they would hospitalize him yesterday but they said we are doing all we can do.