Owen is 30lbs. He lost almost a lb while in the hospital and now I'm trying to get him bulked up for his Fontan. I spoke with a nutritionist at the hospital and she calculated Owen's calories and said he should be getting around 1400-1600 calories a day.
No biggie. We have the Gtube.
Here's where I am scrambling. Owen has a low tolerance for volume. He has always been a puker, and I finally found a balance. For the last year, I set the timer every 30 minutes from 8am-10pm and feed Owen around the clock. It's exhausting.
I am trying to figure out another way. I don't want him strapped to a feeding pump. I have never tried feeding slowly through a syringe and wouldn't know where to start. Do you just fill up a 2oz syringe and let it drip? Or do you push it through the syringe slowly? How much volume can your kids handle and over what period of time?
In a perfect world, I would love him to tolerate a full meal over an hour time period. Give his belly time to empty and then he would be hungry enough to orally eat before his next meal. I'm just trying to grasp onto some kind of hope that we'll lose his Gtube before he gets to college.
Thanks for any input you have.
After he heals up from this surgery, I want to start encouraging the oral feeds a little more. I have focused so much on walking, talking and keeping him alive. It's so hard to find balance.
I am double lame because I have no pictures from today. Kamryn's hair is disheveled after her morning shower and she's in cozy sweats. Owen is napping in his diaper and has stitches hanging out of his chest. There's a visual.
I've got to get back to getting my tax docs in order so we can file tonight. Crossing my fingers for a refund.
Monday, February 21, 2011
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Callie wont tolerate me pushing food through her gtube with syringe. When we did the syringe thing, i just poured the food in a 2oz syringe and let gravity do the work. Callie for the longest time would only tolerate 32mls/hr for her night feeds. 2yrs. later she is up to 75mls/hr. Every 2wks or so I would bump her up, sometimes it would only be by 1ml. So, we have finally made it to the 75/hr. I do not feed Callie through the gtube during the day. So, I can only comment on night feeds. Good luck, I know how frustrating it can be. You just haveto find a good point that works for Mr.Owen and not so demanding for you:)
I'm useless here. :) When you figure it out let me know. We're still using the J tube for Raya's formula and the G tube for water and that's all she gets. Good luck with things. You're a smart cookie and you'll figure out what works for him. :)
With Lily we tried to do bolus feeds at meal times. So, we do about 5-10 mls (I think...maybe it was even 15 mls...it's been a few years...she did tolerate pushing with the syringe very well.) every 15 minutes or so for an hour. I would also offer food during this time, so she could associate putting food in her mouth with a full feeling in her stomach. The bulk of her formula came at night. I'd start a feeding around the time we put her to bed, and let it run until about 3-4:00 am, so when she did wake up about 6 or so, she could actually feel hungry in time for breakfast.
Hi andrea,
you may want to ask
Courtney
http://randycourtneytripproth.blogspot.com/
or
Patrice
http://patriceandmattwilliams.blogspot.com/
They both have a 2 year old baby with EB and tube-feed them thousands of calories daily. They MASTER tubefeeding. Unfortunately :-P
Love and hugs
I'm 25 and I've had a PEG (G-tube) for 2 years now. I'm not quite sure what your concern is with using a pump - don't knock it before the little dude's had a chance to try it. My pump is one of these - the US equivalents are these two, it's TINY, fits in an average purse easy. If you watch the video on the first link, the little boy on the playground apparatus is wearing a special rucksack which has a pouch for the pump and a clip or velcro straps for a bag or bottle of feed. They do a bear backack for it as well as these kiddy-sized ones - it's not like he'd be stuck attached to an IV pole all day.
Nobody ever even knows that I have a feeding tube unless I tell them. They can't see it or hear it, I don't need to stay still or get someone to help me to eat, just set up the pump at the start of the day, into the rucksack with a bottle of feed and away I go. It's been a lifesaver for me - I'm not ashamed of my PEG but I would find it hard to remember to do feeds regularly enough, and it's not convenient to get out syringes etc. in the middle of a formal meeting or in the cinema.
Just a little ‘food for thought’ (sorry!) for you there. Feel free to drop me a line if you have any questions.
Becca
Sydney has never been able to tolerate a bolus feed -- however she can drink 6 oz of milk on her own -- Go figure :). Her pump runs at 120/hr all night long and she does fine. I run her for 12 hours as that is how long she sleeps :) for a total of 1440 cals. Then she eats ad lib during the day. I can't / couldn't chase her all day around with a 60 cc syring trying to get little bits in her. It just didn't work.
I had a girl in my area who is a dietician give me ideas on how to pack in calories in small quantities. I will find that paper and scan and email it to you when I find it.
We had a speech therapist give us an idea to help get Alyson to eat and it worked wonderfully. We did night feedings all night, then during the day she would be hungry enough to want to eat on her own. That took about a month and she was eating by mouth after that. Currently I mix 2 scoops of formula per 6 ounces of whole milk which is around 35ish calories an ounce I figured. 1400 calories a day! WOW! I know Alyson doesn’t get that much, I should figure out what she does get.
Do you have a problem getting in that much calories? Olive oil is heart healthy so maybe a little bit which has a lot of calories could help….maybe. I try to feed Alyson healthy, but unfortunately healthy stuff doesn’t have a ton of calories. She likes ramen noodles, eggs, hot dogs, Vienna sausages, olives…stuff like that. Because she doesn’t eat a ton, I try and give her things that have a lot of calories. We tried PB&J the other day and she gagged when it went in her mouth so that’s not an option right now! She even eats plain lettuce and loves it so she is really random with her eating.
Andrea...
I was totally checking in with you guys to tell you that I FINALLY started Isaac with a Blended diet. Ok, so I haven't gotten my book yet...just surfing the internet and finding what other moms do.
SO....break it all down for us. How much does he eat by mouth at a time...how much "milk" can he tolerate at a time in his g-tube (and are you even giving him milk anymore if you're blending?)
Because...I wanted to ask YOU if you had found a balance with his blenderized foods yet and how much you were giving him each day (AND...fyi...Isaac will be FOUR years old next month, and only weighs 27 pounds!)
Glad you're home...and your only major worry is packing on the pounds.
Kathy
The pump is really not too bad. We use it at night only for and bolus feed during the day. It works well for us. Good luck!
Just found your blog and wanted to say hello and let you know I became a follower. You have a beautiful family.
Andrea,
When I was able to get my daughter off of the g-tube, I was given the OK to just do bolus feedings. Started small and them increased them as she tolerated them. Because we were oral feedig at the same time, I'd give her the bottle and see what she ate and then 5-10 min later bolus the rest. I did get some back in my face a few times, but she got used to it. :) I think the key is to let your child get hungry. It may mean a stable weight for just a little while as they get the hang of eating. Since Owen has the idea of oral feeding, have you ever thought of taking a day or two and just doing oral feeds?
By the way, I really admire the fact that you are feeding him whole foods through the g-tube. It's got to be so much better than formula.
We've had a hard time establishing oral feeds as well because surgery was always hanging over our heads and we figured we'd get to that afterwards. We do 140mls every three hours during day time and we just pour it into the 60ml syringe and let gravity do the trick. The higher up you hold it, the faster it empties. Rudy doesn't have a problem handling the volume so we can usually get it in there pretty quickly.
We've never had to push it in with the plunger, but I imagine one might have to if the kid was active. If he kicks or coughs, it can bubble on up, but otherwise it's a pretty quick and easy process.
We're actually
With Bree we use to have to do 5 ml's every five minutes through the syringe. This was when she was tiny. She just couldn't handle any more than that. We slowly bumped it up to where it took only (only..ha!) 45 minutes to feed her 8 ounces. I am not sure when or why we switched to gravity feeding her with a syringe, but that is what we do now and it only takes 15 to 20 minutes to get the 8 ounces into her. We do that 3 times a day (somehow we need to work in a 4th feeding). Feel free to text or email any questions to me. :)
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