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Preemies
Feeling really down
about the feeding issues.
Robbie's eating got a little better after the surgery but then it got worse again. He settled to where he was eating about 30-50ml at a feeding and I was tubing the rest.
He started spitting up a pretty fair amount again, so thursday they changed us from prosobee to Elecare (again) and since then he's all but stopped eating completely. I'm talking 5 or 10 cc at most feedings. A couple of times yesterday we got 20, but that's the max.
I decided he must hate the flavor so I tried to give him some plain breastmilk bottles today and he still won't eat them.
This is as bad as it's ever been and I'm just so frustrated. I can just see myself chasing him around as a toddler trying to put pureed foods through his tube.
I've been feeding him solids and he'll eat them, but I practically have to pry his mouth open. He doesn't fight me like he does with teh bottle (squirming, crying etc) but he's not enjoying them the way he did before the surgery either.
This sucks.
/vent, whine, cry.
This discussion has been closed.
Re: Feeling really down
Ugh, I'm so sorry. I was hoping you'd be bolus feeding for a while and then just magically he'd transition to solids. It's no consolation but my guys are struggling with eating too, especially Evan who was always my good eater. Now Cameron is my good eater - sort of. I make a damn fool of my self trying to get them to open their mouths so I can sneak some puree foods in there. It's exhausting. And their sensory delay has gotten much worse since we had the tubes put in too.
Does your OT have any suggestions as to why this is happening? From everyone I've spoken with and the specialists at the feeding clinic this is apparently normal behavior for kids on feeding tubes.
I wish I knew how to make this all work but I'm at a loss.
Need help with high fat food ideas? Chunky Monkey
I'm sitting here crying for Robbie, Cameron and Evan. G0ddamn, these kids have been through so much already, it's just not fair that something as simple as eating is so hard for them.
{{huge, huge hugs}}
Thanks guys.
Laura- no, not really. She's really stopped working on oral stuff. She still writes for me to work on oral stim.. but honestly, he's fine with EVERYTHING but food. WHen he's writhing, crying, squirming away from the bottle, I can put the paci in his face and he grabs it and shoves it in his mouth. He's totally fine with sucking, chewing, etc.. just not EATING.
Mrs.D- Thanks. Just you saying you were crying made ME cry. I'm a mess today.
I managed to fight off a good breakdown earlier when he just wouldn't eat.. but tonight I've been reading up on Stellen (do you read My Charming Kids?) and sat here and bawled. Then I tried to tell my husband about it and bawled.
Oh.. and nevermind the blog commenters who have called me ***, whiny and a bad Christian the last couple of days. I don't so much mind ***, but bad Christian.. and the insuation that I'm a bad mom,... well, those hurt more than I wish they did.
I also feel like I have PMS so I don't know if AF is comin' or what.. but I'm sure it's not helping.
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We have the same problem. Cameron is losing interest in his paci but is a better eater (for the moment). Evan loves his paci, can put it back in his mouth, and always has both hands crammed in there along with the paci. I can get him to chew on things, especially a warm wet washcloth, but I am really struggling to get him to open up to eat. We're going back to Bananas tomorrow. I'm thinking maybe he was on strike until he gets what he wants to eat.
Oh, and all those other nay-sayers commenting on your blog can go take a hike! (I'd love to post what I really think, but I'm trying to clean up my potty mouth lately.) They don't know what it's like, and you and I know that we wouldn't wish this on our worst enemy. Besides we are entitled to put and say what we feel on our blogs, and I applaud you for your openness and candor.
Tricia - I'm really sorry that things are going in the wrong direction. I know how hard it is - I used to smile through the tears as Olivia slowly went down to eating nothing by mouth. It's not fun. Or fair.
Since I wouldn't be me without trying to offer some advice - here is what I have:
1) Formula - since Elecare is clearly not working, have you asked to try something else? Tell them you NEED something else. I think you said Neocate didn't work is that right? Maybe try again just to see? Tell the doc you just want to try something else to see if it will work. Ask for something more elemental. We had to switch Olivia from Pediasure to Peptamin Jr (a more elemental enteral nutrition) and it did WONDERS for her reflux.
2) For feedings - do you let him play with the food? I mean make a total mess, put his fingers in etc,? Sometimes that freedom helps kids develop a better relationship with food. Have you tried swiping the food across his lips with your finger? If you are playing with a toy or reading a story while feeding, do the swipe and then go right back to whatever you were doing. See what he does with the food. You can try giving him a spoon to play with - sometimes kids prefer the control. Have you tried mixing some interesting flavors - making something spicy or sweet? Mixing baby food with a little whipped cream?
Sending major hugs to everyone with little ones who have feeding issues. It's a sucky club to be a part of.
PP:
They just switched us to Elecare on Thursday. I figured I'd give it the ol' college try and give it the weekend.
I FINALLY got him to eat tonight.. he took 70ml of plain breastmilk. What I did was add the elecare to the leftover milk that I needed to tube. But I'm not sure that's a permanent solution either.
And Elecare is elemental. I think (from what the GI and NICU said) that it's one of the more elemental things.
my leading theory is that 1) he doesn't like the taste of the Elecare and 2) He can't take the corn syrup solids in powdered formula. I checked and RTF is 7% versus the 55% in most powders.
I can't find the nutrition information in something like Prosobee concentrate to see how it compares to be able to use it for extra calories. But I'm still not ruling out just using a fat in the tube to make up the calories.
2) No.. I haven't tried those things. I will say that today he was reaching for the spoon.. not to feed himself, just to play. but you're right. I should have my hubby bring up the actual high chair (I've been feeding him in the by-your-side bouncy seat) and just let him make a mess and see how it goes.
I also want to get some puffs or something. He likes to put things in his mouth, maybe he would eat something by accident.
As for the whipped cream, they're still not sure if he's allergic to cow's milk, so I'm not sure I'd be allowed to do that.
My pedi and I are going to have a long talk on Tuesday. We have his 9mo checkup (yes, at 10months) and she tends to think more like me on things.
Right now he's just getting stage 1 veggies/fruits. We haven't even made our way through all of them because they had us not feeding solids for 2months.
It's all just so frustrating.
Tonight when he finally ate (after a battle and some trickerly on my part....) I literally cried because he was reaching for the bottle and putting it in his mouth. It was like "THIS is what it's supposed to be like. THIS." and I was bawling.
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I can ask my mom about the Prosobee - I'm sure she can find the nutritional info.
Have you tried MCT Oil? I have no idea how that compares calorie wise. It goes down easily in the tube. Did you ever try Duocal - I think we talked about it before? I have given some to Dominic in his milk and he drank it without saying anything so I don't think it affects the taste. It's 42 cals per tablespoon.
My apologies, I forgot Robbie was under a year.
Puffs are good - they dissolve fast. And as a bonus you can work on his fine motor skills. Olivia also likes things she can hold in her hand - like the baby banana cookies. Stuff that dissolves but is long enough to hold onto. You could also crush up a puff into his food to give it more texture in case he likes that.
It will come together one day. It will. That's about the only thing that I can go off each day
PP.. honestly, thank you for all your support. I think about you ALL the time at home. When I'm struggling I think "PP got through this." this week I've been thinking about O walking. I wonder if Robbie will ever roll or sit up or whatever and I think "O is walking. He will get there." You've really helped me a lot. Just so you know.
And no, the only oil we've tried was olive oil in his sold food before the hospitalization for FTT. I'm pretty sure all the oils are within 1 calorie of each other (40. I think the coconut oil is 39 or something, but close enough.)
If your mom can find out, I need to know what percentage of Prosobee liquid concentrate is corn syrup solids. The regular liquid is significantly lower than the powder. Since EVERY powder we've tried (regardless of milk, soy, elemental, hypoallergenic, whatever) has freaked his tummy out, I really think that's what it is. Something to do with the manufacture of the actual powder.
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I'm glad I can help!! I know Robbie will do all those things. And trust me, he is doing far better in the eating department than Olivia ever did. And once you figure out the right milk/formula combo than I'll bet the other stuff will come along. If you need any suggestions for development stuff just let me know!
For the MCT oil, one site said "Each 15 mL of bland tasting, light yellow colored oil weighs 14 g and contains 115 calories. M.C.T. Oil provides 8.3 calories/g." I think they usually do 5 mls 3-4 times a day. You do need a prescription for it. When Dominic had it as a baby he drank with his bottle no problem. But even if you waited to put it down the tube I think it could help a lot. Maybe that would help with the calories because clearly Robbie is a boy who knows what he wants (and it's not icky tasting formula)
I'll ask my mom - she should be able to find that out. I'm glad you are making some headway towards figuring out the problem. That's great.
I hope today is a better day for you. It will get better - I promise.
I talked to my mom - she has the day off so she didn't have her full info on stuff. She did look at some stuff she had and found that both Ailementum and Good Start 2 do not have any corn in them. They do both have dairy so I'm not sure if that would work for Robbie. One thing to note - Good Start with soy does have corn so stay away from that one.
My mom will look at the Prosobee when she goes to work tomorrow (all her form told her is that it does indeed contain corn but doesn't provide percentages).
I hope that helps!