Ok, this just isn't working

[KJKK8437]

I'm frustrated again today. After a lot of of brainstorming, Nanny and I wanted to raise a few questions/thoughts for you guys.

I'm wondering if there are any other families out there whose child(ren) are mostly tube fed and who do not use overnight feedings. This was the path we took to try to encourage daytime oral feeding, and we have had a lot of success with conquering oral aversion. (No drinking yet, though.)

Now here is the problem -- between the pump (at maximum speed), and the oral feeding, this child spends a shocking amount of time in the high chair every day. I'm out of ideas on how to shorten it up. He's getting frustrated, as am I. Now that he tries so hard to eat by mouth, we have a lot more vomiting, too. We can ease these by giving more breaks and letting him move around during the pump feedings, but that makes a meal that takes almost an hour take nearly an hour and a half.

I've thought about having more, shorter meals (even though it is not recommended as a way to encourage oral eating because the current schedule matches his hunger cycle). But, by the time we plug him in, flush everything (or play keep away if we do gravity by tube), its actually longer in the chair than before. Our therapists and caregivers are anxious about letting him be fed "outside" the chair because he is so active that we are fairly certain he will crawl too far and yank the stupid thing out. Plus, if we connect him more often, and feed more often, there is no time to use the PMV (which causes intense coughing and increases vomting when stomach is full). It is hard enough to find time to use it now that doesn't empty the stomach.

I know this sort of post is probably more appropriate on a feeding board, but I'm not a member of one right now, and I'm really more concerned with what you guys think because you know the additional concerns of aspiration, self-gagging from mucus and suctioning, etc. etc.

We can't be the only family that struggles with this, and I'm hoping its an old problem to y'all.

Frustrated in Virginia

[Baby1107]

Maybe if you posted your schedule it would be easier to make some suggestions. We still do night time feeds. As I understand it, that will be the last thing to go...but Austin is only 8mo and not mobile yet so we have it pretty easy right now.

Does he need to be in the high chair for tube feedings? Maybe I am sneaky, but Austin gets his feedings when he naps. And if it falls when he is not napping then the gets to sit in his jumper while being tube fed or in his swing and watch cartoons. So far this has worked for us, but Iam not sure of your amounts & time requirements.

[aydenava]

With Ayden we never pushed oral feeding,he retched all the time with tube feedings,he was feed overnight & during the day small amounts,just about every 2 hrs,it was the only way to get the calories in him.By the time he was 2 he HATED EATING(TUBE & ORAL)BECAUSE IT MADE HIM SICK.He would cry every time he saw the tube & fight us.When we took him to cincinnati & started the pureed diet through the GT he never retched again,10-20x per day to Zero.After about 4 mo. of no retching(age3)He wanted to eat by mouth,he sat with us for every meal & I always gave him food & he would play with it & eventually started tasting it,I never pushed him.Since his trach has been out(2 mo. now)Hes eating a-lot,2 chicken nuggets,french fries,fruit snacks,dry cereal,ect...I truly believe & some Docs agree,with retching,he associated food with vomiting/retching,so to him it was like eating poisen & once that was out of the equation he was willing to eat,not huge amounts but he tried & wanted food all day long,since hes taken off now we think the trach was making it uncomfortable to swallow,the pierre robin does make the trachea & esophogus very close together,now I encourage him to try new foods,because now I know its physically possible,with the trach,for my son anyway I dont think it was completely possible.Take your time & when you eat give him food too,let him play in it & it is a slow process,but a long term GT isnt going to hurt him.......................Angie

[KJKK8437]

Maybe if you posted your schedule it would be easier to make some suggestions.

Ok. Alex used to be 30% oral drinker, so we never got into the continuous feeds, etc. Docs said it was a step he didn't need, so even after we lost the oral skills, we were already at a daytime only feeding regime and just kept it.

breakfast 8AM -- 7 oz. formula by pump, anything by mouth that is tolerated (usually not much)

Lunch noon -- 1-2 tubs stage 2s and 7 1/2 oz formula by pump

Dinner 4-5 pm, same as lunch

Snack 645 -- about 1 tub of food

Bedtime -- 8 oz after Alex is asleep, by tube/gravity because it is faster than the pump.

Pump is started after 15 minutes, and is set at 400 ccs/hour. 7 1/2 oz is about 220 ccs. This is as fast as the pump will go. This makes the awake meals over 1/2 for pump alone.

[sandra]

Does he tolerate bolus feeds? I didn't put Brian on night feeds either. We divided his feeds into 6 feeds and slowly bolused that in over 15 minutes. I didn't use the pump. The first feeding was early in the morning before he really woke up and one was about 10 at night after he was asleep.

He could tolerate a lot at a time and I know that isn't the case with lots of children.

[lovemymak]

We used to do the same thing......feeds during the day to associate the full feeling with meal times. It never worked. We then worked with our GI Dr on a different approach and switched it completely. We did all the feeds overnight and made sure that they finished an hour or two before she would wake up. This way she would feel hungry all day. She'd get everything she absolutely needed to gain weight overnight, and then she'd be hungry during the day, and more likely to want to eat something.

[TommysDad]

First of all I want to thank Angie for her post as this gives us hope.

As for what can help your little guy, I wish I had the answers because then I could get my guy to eat by mouth, too and to stop vomiting.:( All I can give you is great big cyber hung and tell you to hang in there! It's a long road, and sometimes waiting is the hardest thing in the world:hug: What patients you have! You're an amazing mom!

~Maggie

[KJKK8437]

Along the lines of what Maggie and Angie mentioned, I saw on another board that a child who was 100% tube fed and 100% averse began eating at 28 months and isn't looking back. I found that encouraging, so I thought I'd pass it along. This will happen.

Sarah, I've heard of that approach -- do you have nursing at night for the pump, or do you just let it run by itself?

Our new (really good) speech therapist is going to talk with a nutritionist and our pede and try to come up with some more ideas.

Thanks, everyone.

[lovemymak]

Sarah, I've heard of that approach -- do you have nursing at night for the pump, or do you just let it run by itself?
We used to do both. Run by itself (and hope for no bed leaks) and nursing on occasion. Keturah is 100% oral fed now. She went through a 3 week inpatient intensive feeding program when she turned 2. It has had it's set backs, and she's only eating things such as high calorie formula, gogurts, pudding, ice cream, parmesan cheese, etc, but it's enough to keep up her weight herself. I've heard that VA has an AMAZING inpatient feeding program......

[drct1245]

Karin,
Ever thought of going to more food and via a 60/70cc syringe so you can push it in? Ayden NEVER tolerated formula via a bolus feed, but was able to tolerate his puree. Ayden's puree is about 50cal/oz or about 1.6cal/mil. We let Ayden eat orally as much as he wants for about 15-20min and then we push in his puree and continue to let him feed himself. We do 3-70cc boluses. We can now push in a bolus in about 5 min, then wait 10 and repeat.

We still have do feed Ayden some at night - it's about 1/2 water and 1/2 formula. We only have nursing 3 nights a week and so we turn on the feeding at about 10pm and double check that it's ok before we go to bed. It stops about 4:30ish.

I feel for you as it's very hard to try and keep the kids on a normal schedule. Our schedule is about the same as yours -
8a 3-4 oz bottle by mouth - whatever he will take and 3oz of morning puree
11a 3-70cc puree (oral feeding for about 10-20 min first)
5ish same as lunch
8 bottle - what ever he takes (1-4oz)
10pm night feed 350-400cc (1/2 water- 1/2 pediasure)

hope that helps a little. I would love to get away from the night feed, but I don't think we can get enough water in during the day.

[MOMOFFAITH]

From the info you give- he's getting about 880ccs + 4-5 jars of baby food per day. The biggest thing for us was to know how many calories or ccs she had to have per day to maintain (or gain) weight--then we played with the sched that would work around meals and school... we also had to change it when all the vomiting was increasing!

Kadyn was vomiting 1-3 times a day-all formula until 2 1/2 wks ago when we started the reglan! It slowed last year when she was on Elecare, but started up again w/ a vengeance. Now she is a different child- hungry all the time, trying lots of new foods, etc... We can tell the reglan is emptying her tummy fast for sure!

Because of the vomiting, we have played with her feeds several times. We had to keep reducing the amt of formula and reducing the rate in order for her to keep it down. We couldn't get her calories in without doing a night feed. We also discussed this w/ her sp ther and dietician. They agreed that if we tried to break the feeds up in the day and feed her at meals while continuing to offer oral foods, that she should still associate the food with the satisfying feeling. We also spread out the feeds during the day and try not to "overfill" her w/ formula , so that by the next feeding she will have hunger cues and be ready to eat. I really wish a good dietician would do a study of this topic--

Her sched now is 5 feeds every 3 1/2 hrs starting
7:30a, 11a, 2:30p, 6p, 9:30p of 140ccs at rate of 320/hr
and 12a-4a of 400ccs at 100/hr overnt.

if we eat supper late (7-8p) then we feed her with us and add her 9p feed of 140 to the nighttime feeding & start it at 11p.

Since she is doing so well now acting hungry all the time- I want to ask the DR if I can bump her feeds up in the day to 160- 170 ccs 4 times a day - every 4 hrs, then have night feed of 440- 460ccs. I think this will spread feeds further and help us hit the mealtimes better and begin possibly counting calories of snacks in between. May make her hunger cues stronger too!

I apologize for being long winded- hope this gives another perspective!

[cariaad]

KArin, it sounds like an awful lot of stuff in the stomach at one time. Allison never tolerated that well at all. Can you get a pump that will fit in a backback and do a feeding over a longer period of time? That way he isnt tied to a high chair and still gets the amount yo want. We finally went to overnight feedings (and now one afternoon feeding) because of the volume tolerance issue. If she got 100 cc/hr over 10 hours she was OK, because at that rate she could empty enough from the stomach at a comfortable rate to accept more. We just run the pump overnight, once we quit using extension sets with med ports it was no more feeding the bed. Feeding issues are the worst1 Deb

[faywrayy]

We do no tube feeding during the day, only at night. The last feeding stops about 3:30am, in the hope she'll be more hungry in the morning. She's a tough one. The DGE keeps her feeling full longer and it usually takes until 3 or 4 in the afternoon until she really feels hungry enough to eat a good amount. But we do bolus feeds, not continuous. If we did continuous, she never eat.