Got miss whit weighed on tuesday and she gained!! In two weeks she gained 7 oz! That's huge! and very surprising! She's been 16 lbs 14 oz for a month solid! Now she weighs 17 lbs 5 oz. That's 7 oz! Pediatrician said she should gain about 2 oz a week. The wierd thing is that on our no goat's milk formula trial Whitney threw up 3-4 times a day! Way way worse than the 1-2 times a day. I'm so confused. I don't knew if I should go back to the goat milk or wait another week, getting very mixed signals.....threw up a lot yet gained a ton of weight....
Whitney is still not interested in eating by mouth. She gets very upset and frustrated. Which makes me less motivated to feed her. But I hold strong and let her play in her food 2-3 times a day. Even though I'm getting very tired of her vomitting all day and grumpiness, I know I need to do my best for Whitney, and one day she will be an eater!
Wednesday, September 21, 2011
Tuesday, September 13, 2011
New trial and the Goat Milk Formula Recipe
going to try a new trial and hopefully not error this time. Whitney is still vomiting once or twice a day. No matter how consistent I am. No matter how inconsistent I am. No matter how much or how little I feed her. No matter how fast or slow it goes into her. No mater how far apart or close together her meals are. So the one thing we have been doing this whole time, the common denominator, is the Goat Milk. So for the next seven days, starting tonight, she will be feed only Neocate Jr. unflavored. Just a trial to see if she is allergic to something in that. She has been fed our homemade Goat Milk formula for about 9 months. The homopathologist said it was good for her. Some speech therapist say it's good. Wish us luck!?
Ingredients:
12 oz Raw Fresh Goat's Milk
20 oz Organic Rice Milk
1 tsp. Nutritional Yeast
1/2 tsp. Probiotic
1 tsp. Flax seed oil
1 tbsp. Blackstrap Molasses
single herb Slipper Elm
IO-Plex-A-Dine Liquid
Formula equals 18 kcal per oz
to thicken to Nectar consistency for a bottle feed, add 1 tsp of grounded up organic rice or oatmeal cereal for everyone 1 oz of formula. equals 25 kcal per oz.
If you add one scoop of duocal to a 4 oz bottle it makes the total 31 kcal per oz with cereal.
The pediatric surgeon said that she's not ready for me to do the blenderized diet/homemade formula. The Dr. is just concerned that it will clog the tube. The tube cannot be replaced till the end of October (2 months after surgery). So, if it were to clog with thicker formula, we couldn't use it till it's able to be replaced. The surgeon is always saying how she had OCD (obsessive compulsive disorder) and that she'd rather prevent things then have to fix them! I'm perfectly okay with that and love that she has OCD! I also learned how to check the water level in the ballon. It's pretty easy, just make sure the baby is holding still or do it while asleep. Her's needs about 5 ml's of water in the ballon. They are ordering me and extra button so that I will have one on hand. They also gave me a sponge with silver nitrate in it to put around Whitney's G-tube to help decrease the granulation. I replace it everyday after her nightly bath. She said she might need to use it for a month or so. We will be seeing the surgeon every 2 weeks for her to checkup on the g-tube. Thats a lot of visits and a long drive!
RELATING to WHITNEY...
I remember that while I was pregnant with Whitney, during that last month or so, I had really bad heartburn. I could hardly sleep. I would several tums at night and sleep practically sitting up! I can tell Whitney's reflux is really bugging her and I hope the prevacid is working. The GI nurse says it's a good amount for her weight.
Also, one time I ate at Olive Garden and had bad heartburn for the next two days! With that bad expericence it makes me not want to go back! Anytime I have a bad expericence with food, even I get and aversion to it. In general, I am a picky eater and have not even tried a lot of differents foods simply because of the way it looks or smells or the textures. I hate the smell of pickles, I hate the looks of a tomato, I hate the texture of bananas, just to name a few. But with time and encouragement I'll try new things...
So I can totally understand why Whitney doesn't eat, it makes her feel bad! It's up to me to help her enjoy eating. That's pretty much what my life is about. I wonder what I would be doing if I wasn't always focused on her feeding issues. It seems like a strange hobby but I enjoy learning about this stuff. Even though it's weird to not eat, I mean we have to eat to survive! I still understand her.
As a side note, for all you mamma's with NG tubie's, don't let them have that for very long. I personally regret Whitney having that thing for 9 months! Not that it was my choice to have it that long, but it was my choice to get the Gtube. I really didn't want it but Whitney has done so much better orally. She's able to eat and not gag! I think the NG tube contributed to her oral aversions. It's okay for short term (3 months). But I do think think the G-tube has made her reflux worse. We are working on that. Just do lots of research and it won't be scary.
Ingredients:
12 oz Raw Fresh Goat's Milk
20 oz Organic Rice Milk
1 tsp. Nutritional Yeast
1/2 tsp. Probiotic
1 tsp. Flax seed oil
1 tbsp. Blackstrap Molasses
single herb Slipper Elm
IO-Plex-A-Dine Liquid
Formula equals 18 kcal per oz
to thicken to Nectar consistency for a bottle feed, add 1 tsp of grounded up organic rice or oatmeal cereal for everyone 1 oz of formula. equals 25 kcal per oz.
If you add one scoop of duocal to a 4 oz bottle it makes the total 31 kcal per oz with cereal.
The pediatric surgeon said that she's not ready for me to do the blenderized diet/homemade formula. The Dr. is just concerned that it will clog the tube. The tube cannot be replaced till the end of October (2 months after surgery). So, if it were to clog with thicker formula, we couldn't use it till it's able to be replaced. The surgeon is always saying how she had OCD (obsessive compulsive disorder) and that she'd rather prevent things then have to fix them! I'm perfectly okay with that and love that she has OCD! I also learned how to check the water level in the ballon. It's pretty easy, just make sure the baby is holding still or do it while asleep. Her's needs about 5 ml's of water in the ballon. They are ordering me and extra button so that I will have one on hand. They also gave me a sponge with silver nitrate in it to put around Whitney's G-tube to help decrease the granulation. I replace it everyday after her nightly bath. She said she might need to use it for a month or so. We will be seeing the surgeon every 2 weeks for her to checkup on the g-tube. Thats a lot of visits and a long drive!
RELATING to WHITNEY...
I remember that while I was pregnant with Whitney, during that last month or so, I had really bad heartburn. I could hardly sleep. I would several tums at night and sleep practically sitting up! I can tell Whitney's reflux is really bugging her and I hope the prevacid is working. The GI nurse says it's a good amount for her weight.
Also, one time I ate at Olive Garden and had bad heartburn for the next two days! With that bad expericence it makes me not want to go back! Anytime I have a bad expericence with food, even I get and aversion to it. In general, I am a picky eater and have not even tried a lot of differents foods simply because of the way it looks or smells or the textures. I hate the smell of pickles, I hate the looks of a tomato, I hate the texture of bananas, just to name a few. But with time and encouragement I'll try new things...
So I can totally understand why Whitney doesn't eat, it makes her feel bad! It's up to me to help her enjoy eating. That's pretty much what my life is about. I wonder what I would be doing if I wasn't always focused on her feeding issues. It seems like a strange hobby but I enjoy learning about this stuff. Even though it's weird to not eat, I mean we have to eat to survive! I still understand her.
I tape the extension to her diaper
Wearing the silver nitrate sponge
As a side note, for all you mamma's with NG tubie's, don't let them have that for very long. I personally regret Whitney having that thing for 9 months! Not that it was my choice to have it that long, but it was my choice to get the Gtube. I really didn't want it but Whitney has done so much better orally. She's able to eat and not gag! I think the NG tube contributed to her oral aversions. It's okay for short term (3 months). But I do think think the G-tube has made her reflux worse. We are working on that. Just do lots of research and it won't be scary.
Cute video with surprise
I saw and heard Whitney babbling on the monitor so I went in with my carmera recording. Looking back on it I feel so dumb! Ha ha! But oh well!
Tuesday, September 6, 2011
New feeding schedule
The past three days I have been feeding Whitney differently than before. Before I use to do her meals over one to two hours and she would vomit once or twice a day. They say do it slower so that she can handle it. Then, we thought that maybe she was vomiting so much because it was so slow and having food constantly in her belly. So on Saturday morning, after she threw her her first "slow" meal, I tube fed her 100 ml's over 20 minutes! She did great with that! So we did that schedule all day and she didn't throw it up! I tried to hold her, or she sat in her high chair, or she was asleep for the whole meal. I added in one more meal a day (5total) to get her the right amount. Night drip is still 200 ml's, then 100 ml's at 9 AM, 12 PM, 3 PM, 6 PM and 9 PM. She did NOT vomit on Sunday with this schedule. On Monday, I increased it by 5 ml's and she threw up the 12 pm meal, but I think it was because we were at the wild life park and she was really hot. Today I gave her 105 ml's and she threw up her 3 pm meal while she was just walking around. So that was sad. Usually, if she throws up her entire meal, I will start the next one half an hour early. I will try to stay at the 105 ml's 5 times a day for a couple days if she doesn't vomit, if she does then it's back to 100 and if she keeps it all down then I will increase it another 5 mls. So now she gets just over 700 ml's a day (24 hours).
We had a different feeding therapist today because our's is out of town for a couple weeks. This one was pretty good and thought that Whitney was doing really good by playing in her puree and chewing on all their fancy chew toys. Whitney tasted the apple sauce once! The feeding therapist said to keep letting her play in her food 2 or 3 times a day and eventually she will taste it more. So today she played in some pork and beans. Also dipped some cracker in cheese. I always give her puff like foods, for example, today I bought her
veggie straws,
pirate booty,
snikidy baked fries,
snap pea crisps,
and gerber puffs.
Whitney eats these a little bit! It's also good to let her experience real whole foods like brocolli, strawberry, bannana, zuchinni or squash slices, basically anything they can suck on and won't choke on. I'm afraid to give her carrots because they are small and could slip out of her hand and down her throat.
We got her weighed today. 16 lbs 14 oz. Did not gain a single ounce! She's been that weight for 3 weeks now! Very strange to me!
We had a different feeding therapist today because our's is out of town for a couple weeks. This one was pretty good and thought that Whitney was doing really good by playing in her puree and chewing on all their fancy chew toys. Whitney tasted the apple sauce once! The feeding therapist said to keep letting her play in her food 2 or 3 times a day and eventually she will taste it more. So today she played in some pork and beans. Also dipped some cracker in cheese. I always give her puff like foods, for example, today I bought her
veggie straws,
pirate booty,
snikidy baked fries,
snap pea crisps,
and gerber puffs.
Whitney eats these a little bit! It's also good to let her experience real whole foods like brocolli, strawberry, bannana, zuchinni or squash slices, basically anything they can suck on and won't choke on. I'm afraid to give her carrots because they are small and could slip out of her hand and down her throat.
We got her weighed today. 16 lbs 14 oz. Did not gain a single ounce! She's been that weight for 3 weeks now! Very strange to me!
Thursday, September 1, 2011
Puke Puke Puke...
Yes, three times...so far...today Whitney threw up all her meals! She's on Neocate Jr. I can't wait to get the OK to start the homemade blended food or blenderized diet. She got 150 mL's over night and did fine in the morning. She got 120 mL's from 10-11AM and threw up. She got 120 mL's from 2-3PM and threw up. She got 120 mL's from 6-7PM and threw up. I really hope there's nothing wrong. I'm going to call the surgeon and GI Dr.'s in the morning. Basically for her, not keeping things down is bad. I'm sure she didn't get much nutrition today. She still doesn't eat any by mouth, it's hard to just get her to try things now. I have asked a few other moms of tubie's and I want to share what they have to say... ( I have deleted everyone's name but mine)
- Anything new? Runny nose,new meds???
ME: Nope, nothing new! She's had the gtube for a week now, is it normal to not tolerate feeds for a while? she got 4 oz in one hour. (she's had and NG tube for 9months and got 5 oz in one hour and didn't throw up AS much). ?
my son has had the gtube for 3 1/2yrs and he would vomit everything given to him through his tube. he would vomit 20x/day. finally after test after test it was determined he has slow gastric emptying plus the formula was the wrong one for ...him. changes we made were: slowing his rate down and having his feeds run longer. he is at 180cc/hr x 2hrs 3x/day, next change was polyric botox injections, 3 so far and as of right now the dr won't do anymore cause he only vomits like 1-2x/day if even that, oh and the first change we made was his formula------he can only tolerate elecare unflavored. keep in in this took over three yrs to finally get this all under control, now the next step is to keep trying to get him to eat orally, he only eats very little by mouth.
me: Then I will definitely ask the GI if there is anything else he can do ie. tests or meds! I feel like her reflux is worse...
- Our daughter became a vomiter once she got her gtube...played around with rate etc but hasnt completely gone away. Not helpful I know but wanted you to know you aren't alone!
- ·
- ME: Thanks! It's frustrating and discouraging. And she just threw up her third meal today!
·
ME: oh interesting! She's on Neocate JR. unflavored, has been for about a month 1/2 now.
my other question:
I use to do 5 oz (150ml's) in one hour with NG tube. She threw up once a day and gained weight.
Now with new G tube I do 4 oz (120ml's) in one hour of Neocate Jr. She throws up more with that! Is it too fast? too much?
She 'needs' 800ml's a day but only gets 650mls a day with the vomitting! I feel like I've tried every thing!
Answers:
There is no "one size fits all" answer. Your LO obviously is not tolerating the boluses at that rate and or volume.
You can try adjusting one or the other or both at tge same time. I would suggest giving less volume in each bolus and add in one more feeding time to start. You can slow the rate too if she's still struggling.My LO can't tolerate much by bolus so we do a small percentage by day in 3 boluses and then do a continuos feed overnight at a much slower rate. That helped us a lot.
Is she on meds for Reflux? Has she had a gastric emptying scan? For us, even on meds, it was trial and error finding the rate and volume our DD liked and once that happened things improved dramatically.
It's important she's getting enough fluids daily too, especially with the vomiting so water is also important.
Have you looked at everything she takes in I read she is on neocate I know the first ingredient is corn solids (processed corn) they wanted to put my LO on this, we chose not to because he does not tolerate processed foods. I know she has a new G-tube and probably had a nissen done also. You may need to go down a little more in volume. Rylan can handle exactly 165cc's per feeding and nothing more of he throws up too. Her stomach may still need to stretch to handle the volume you are giving her. Also are you feeding by pump or gravity, we do gravity because Rylan could not handle the pump for some reason. And if she does have reflux you may want to look into some gripe water it is natural and has no side effects as opposed to conventional drugs.
Hope this helps.
It does take a little while to figure out what your daughter can handle. It sounds like her G tube is relatively new? My daughter can only handle 120ml by bolus and she has to be laying down (elevated). If she is sitting up she throws it all up. Something about the tube makes kids puke. My daughter never threw up in her life until she got a tube. She could take 4oz. by mouth (dream feeding) and never got uncomfortable. With the NG tube we couldn't even give her 2oz. over an hour or she would puke??? Now with her G tube she can handle 4oz. but barely. I feel like I am constantly disagreeing with the nutritionist because she always wants Macy to take in more than she is....but she just cannot handle more. She is at her max continuous feed overnight, and her boluses are maxed out. Every kid is different and you know what your daughter can handle and can't. Trial and error is all you can do to figure it out. But if her G tube is still new, I noticed my daughter did get better with time. GL!
Small guaze with slit provided by feeding company (option 1) with a single piece of tape
Guaze when I took it off for her bath. I put it on at 9 PM and took it off at 11 AM so 14 hours of goo!
The other side, it's greenish and gooey :)
4x4 guaze (leftover from hospital) and button buddy, this way I don't need tape!
It's difficult to tape the extension to Whitney's skin, or diaper or shirt. I really don't want it to get pulled on!
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