Tubie Pajamas

Tubie can do anything!  But when they throw up twice a day, the parent is very hesitant to let them do anything.  Don't run to fast after a meal, don't spin in circles right after a meal, don't eat or drink anything right after a meal, don't get upset or throw a tantrum after a meal, don't laugh to hard after a meal, don't crawl up the stairs after a meal, and don't burp after a meal, don't go for a car ride after a meal, don't take a bath right after a meal.  ......   All these things can and usually do result in vomit.  Sometimes, she's still in her high chair doing nothing and she'll still vomit after a meal!  Sorry for the blah post but that's ALL I can really think about.  And of course the GI nurse was all like, Yeah, it could be a motilty delay, and yeah it could be an overly sensitive gut, and yeah we can only increase her bethanechol by .2mls,  and yeah we don't do anything to help...  And the feeding therapist is always reccomending doing different schedules that I've already tried a million times.  And before a blenderized diet we were just using formula or the Goat milk and everyone was all like,  she won't vomit any more on a BD because it's real food and it'll be heavier in her stomach and it'll help her eat better  ......... Again, Sorry for the complaining post. 

anyways, here's the part about Whitney's makeshift tubie jammies.

"X" marks the spot of her button.

I simply snipped a hole, leaving a little flap.



TaDa! easy access to her feeding tube with out disturbing a sleeping baby!



My amazing husband so willing to feed Whitney every night!

NEW feeding schedule

 Whitney started vomiting again. It was a few weeks ago but is getting worse! I can't figure out what I did differently.  I write everything down about when, where, and what I feed her.  But it was kind of around the time I slowly transitioned from just the Goat Milk Formula to a Blenerized Diet.  And also at that time I was weaning her off of the night drip.  So the GI doctor told me that Whitney should be able to tolerate 8 oz of BD at a meal, which she never has in her life....  So I decided to feed Whitney 6 oz 4 times a day, 24 oz of the BD.  She recently started throwing up twice a day so I asked around.  Some people thought it was dairy, but Goat Milk isn't Really dairy.

  So one friend suggested:
"In my opinion, it would probably be less of a change for her to be fed the same blend you're already doing in smaller portions more often first, and then if that doesn't change anything maybe try switching up the blend to less ingredients to see if maybe something is bothering her."
And some didn't agree with her, I didn't at first either,but when I thought about it longer, it made more sense to try that first than to change up Whitney's entire blend!
Another said:

"I don't know if I agree. It may be a food that you are feeding that is not agreeing with her, if her currents blends aren't working then you may want to reevaluate what you are feeding her. Remember, an intolerance is different than an allergy....she may have a hard time with something that you are unaware of. I would almost suggest going back to basics, simplifying your blends and seeing what she tolerates. Less more often should help if it's a motility issue. Have you had a gastric emptying study done? Does she have any constipation? I know this is all tough, trust me! We dealt with vomiting for 6+ mths, I was almost defeated, but we stuck with it and found what works for William. Good luck!"

 

 

Anyways! For a couple days now I started feeding Whitney 4 oz 6 times a day, So it's still 24 oz total, but smaller meals more frequently.  You know,like a regular oral eater! snacking all day!  And she is doing much better with this!  She's only vomited twice since and one spit up because she was crying a lot.  So hopefully this will be it, haha, but I doubt it!  (It'll be something new bugging her in a couple weeks, I'm sure).  Also I think that she may have motility issues/delayed gastric emptying plus an overly sensitive gut (because of her being born with CDH, all of her insides being moved around so much).   My friends told me about how thier sons eat and this is what they said:

"Chase is almost 15 months old. He has four 5oz bottles of milk a day and 3 meals (breakfast, lunch, dinner). For breakfast I usually feed him a grain & dairy (like a cereal bar & string cheese). Lunch is a meat, fruit, veggi and grain. Dinner is the same as lunch along with a little dessert (chocolate graham crackers or something lol) . If he seems hungry in between meals ill give him his sippy cup of either water or a little juice. My child is a chunkster though and has always loved all foods... he is 28lbs! I just let him eat however much he wants. Sometimes he barely wants anything and at other times will be eating for a half hour straight. When he's full he let's me know!"


 "boys are pretty picky. Even at that age. Braxton has hardly ever eaten meat. So he gets most of his protein through peanut butter and eggs. Nixon doesn't like eggs but will eat meat. They eat 3 meals a day. Small breakfast, good sized lunch and an average dinner. They always have a 10am snack(crackers, fruit, cheese, yogurt, or applesauce, that kind of stuff) and a 3pm snack as well. They have to have snacks in between or get really cranky. I keep their snacks small tho or else they won't eat their next meal. At mealtime tho I do the same as faith, let them eat as much as they want. I've got one chunkster and one skinny winny. But they both eat a lot so its just how they're built! Good luck"

"Unless Caleb was in a serious growth spurt I could never get him to sit and eat a straight solid meal (he'd push it away SCREAMING). So life at our house was a series of snacks - he'd get up and have a sippy cup of milk, 30 mins later he'd have a cup of yogurt or maybe eggs and toast, an hour after that he'd have fruit, an hour after that he'd have cheese and crackers. Then usually it was nap time and when he got up I might be able to get a half a pb&j into him (its HARD to get this kid to eat protein so I usually have to go dairy or peanut butter), hour later more fruit or maybe a veggie (if we're lucky), I could usually get a small serving of whatever we're having for dinner down him and then usually one more snack - crackers and fruit or some more cheese, then another sippy of milk (he drinks water during the day) and then to bed. I tried doing 3 squares and that just doesn't fly with him. From birth he's been a grazer."

I thought it was so fascinating!! I can't even imagine what life would be like if Whitney ate food by mouth!! It's funny because my whole life I knew that kids eat!  They eat normal foods all day and grow healthy and strong, just fine! even if they are picky!  But know that my daughter doesn't eat, it's so interesting to me to see other toddlers eat! And of course I really really wish Whitney would!  But I know, that one day we will get there, but not anytime soon. 

Also, Whitney got an Occupational Therapy evaluation!  I really hope she qualifes (I know that sounds weird) so that they can work with her sensory issues!  I think it will help out a lot!  It sucks for me though because then I would have to drive to scottsdale (30 min) twice a week instead of just once. Oh well, Whit's worth it! 

My diet analysis

This is a list of the nutrients in each food that I added to Whitney's blend the other day.  I know there is a lot of fruit but the day before there were mostly veggies.  But most of the time I make it an even amount of both!!  I just type in the food and it brings up a list to choose from.  I choose the most accurate one and choose the amount of food and then my diet analysis does the rest.  I love this program!  Now I know how much calories,  protein, fat, carbs, and all the vitamins and minerals my daughter is getting through out the day. 

All Nutrients Spreadsheet This report shows all nutrient values in a spreadsheet format. Nutrients are displayed horizontally, with totals at the bottom of the list. Profile Info Personal: Whitney Female 1 yrs 2 ft 7 in 20 lb Day(s): 12/11/11 (Snack) Activity Level: Very Active Strive for an Active activity level. Weight Gain: 0.5 lb per week Best not to exceed 2 lbs per week. BMI: 0.0 Normal is 18.5 to 25. Clinically Obese is 35 or higher. Day Meal Item Amount Cals FatCal SatFatCal Prot (g) Day 2 Snack Milk, goat, w/add vit D (USDA 1.5 cup 252.5 136.4 87.8 13 Oil, flaxseed (USDA SR-23) 2 tsp 80.1 81.6 7.6 0 Yeast, nutritional, flakes (Now 1 tsp 8.3 1 0 1.3 Molasses (USDA SR-23) 0.5 tsp 9.7 0 0 0 Oats, rolled, old fashioned, dry 0.5 cup 150 27 4.5 5 Coconut, water, fresh (USDA SR- 0.2 cup 11.4 1.1 0.9 0.4 Cereal, granola, oats & honey 5.3 tbsp 113.7 26.7 4.4 2.5 Date, Deglet Noor, whole (USDA 2 each 40.1 0.4 0 0.3 Banana, fresh, med, 7" to 7 7/8" 0.5 each 52.5 1.7 0.6 0.6 Kiwi, fresh, 2" (USDA SR-23) 1 each 42.1 3.2 0.2 0.8 Cranberries, dried, swtnd (USDA 6 tbsp 140 5.5 0.4 0 Strawberries, swtnd, fzn, 0.2 cup 49.7 0.8 0 0.3 Broccoli, fresh (USDA SR-23) 0.2 cup 7.7 0.7 0 0.6 Carrot, baby, fresh (Dole) 0.2 cup 13.3 0 0 0.3 Day Total -- 971.3 285.9 106.5 25.3 Average Day Total -- 971.3 285.9 106.5 25.3 Day Meal Item Carbs (g) Sugar (g) Fiber (g) Fib-S (g) Fib-I (g) Fat (g) Day 2 Snack Milk, goat, w/add vit D (USDA 16.3 16.3 0 0 0 15.2 Oil, flaxseed (USDA SR-23) 0 0 0 0 0 9.1 Yeast, nutritional, flakes (Now 0.8 0 0.7 0.1 Molasses (USDA SR-23) 2.5 1.8 0 0 0 0 Oats, rolled, old fashioned, dry 27 1 4 2 2 3 Coconut, water, fresh (USDA SR- 2.2 1.6 0.7 0.1 Cereal, granola, oats & honey 20.8 6.9 1.5 3 Date, Deglet Noor, whole (USDA 10.7 9 1.1 0 Banana, fresh, med, 7" to 7 7/8" 13.5 7.2 1.5 0.2 Kiwi, fresh, 2" (USDA SR-23) 10.1 6.2 2.1 0.4 Cranberries, dried, swtnd (USDA 37.4 29.5 2.6 0.6 Strawberries, swtnd, fzn, 13.4 11.9 1.2 0.3 0.9 0.1 Broccoli, fresh (USDA SR-23) 1.5 0.4 0.6 0 0.5 0.1 Carrot, baby, fresh (Dole) 3 1.7 0.7 0 Day Total 159.2 93.5 16.6 2.4 3.4 31.8 Average Day Total 159.2 93.5 16.6 2.4 3.4 31.8 Day Meal Item Fat-S (g) Fat-T (g) Fat-M (g) Fat-P (g) Chol (mg) Water (g) Day 2 Snack Milk, goat, w/add vit D (USDA 9.8 4 0.5 40.3 318.5 Oil, flaxseed (USDA SR-23) 0.8 0 1.8 6 0 0 Yeast, nutritional, flakes (Now 0 0 0.2 Molasses (USDA SR-23) 0 0 0 0 0 0.7 Oats, rolled, old fashioned, dry 0.5 1 1 0 Coconut, water, fresh (USDA SR- 0.1 0 0 0 0 57 Cereal, granola, oats & honey 0.5 0 1.7 0.2 0 Date, Deglet Noor, whole (USDA 0 0 0 0 0 2.9 Banana, fresh, med, 7" to 7 7/8" 0.1 0 0 0 0 44.2 Kiwi, fresh, 2" (USDA SR-23) 0 0 0 0.2 0 57.3 Cranberries, dried, swtnd (USDA 0 0.1 0.3 0 7.3 Strawberries, swtnd, fzn, 0 0 0 0 0 49.8 Broccoli, fresh (USDA SR-23) 0 0 0 0 0 20.3 Carrot, baby, fresh (Dole) 0 0 0 0 0 24.8 Day Total 11.8 0 8.8 8.3 40.3 583 Average Day Total 11.8 0 8.8 8.3 40.3 583 Day Meal Item A-RAE (mcg) A-Car (mcg) B1 (mg) B2 (mg) B3 (mg) B6 (mg) Day 2 Snack Milk, goat, w/add vit D (USDA 208.6 25.6 0.2 0.5 1 0.2 Oil, flaxseed (USDA SR-23) 0 0 0 0 0 0 Yeast, nutritional, flakes (Now 0 0 1.6 1.6 9.3 1.6 Molasses (USDA SR-23) 0 0 0 0 0 0 Oats, rolled, old fashioned, dry 0 0 Coconut, water, fresh (USDA SR- 0 0 0 0 0 0 Cereal, granola, oats & honey 0 0 0 0 0.2 0 Date, Deglet Noor, whole (USDA 0.1 0.8 0 0 0.2 0 Banana, fresh, med, 7" to 7 7/8" 1.9 15.3 0 0 0.4 0.2 Kiwi, fresh, 2" (USDA SR-23) 3 35.9 0 0 0.2 0 Cranberries, dried, swtnd (USDA 0 0 0 0 0.4 0 Strawberries, swtnd, fzn, 0.9 10.2 0 0 0.2 0 Broccoli, fresh (USDA SR-23) 7.1 82.1 0 0 0.1 0 Carrot, baby, fresh (Dole) 208.3 2025 Day Total 429.8 2195 1.9 2.2 12.2 2.2 Average Day Total 429.8 2195 1.9 2.2 12.2 2.2 Day Meal Item B12 (mcg) C (mg) D-mcg (mcg) E-Toco (mg) Fola (mcg) Calc (mg) Day 2 Snack Milk, goat, w/add vit D (USDA 0.3 4.8 4.8 0.3 3.7 490.4 Oil, flaxseed (USDA SR-23) 0 0 0 1.6 0 0 Yeast, nutritional, flakes (Now 1.3 0 0 40 Molasses (USDA SR-23) 0 0 0 0 0 6.8 Oats, rolled, old fashioned, dry 0 0 Coconut, water, fresh (USDA SR- 0 1.4 0 0 1.8 14.4 Cereal, granola, oats & honey 0 9.9 Date, Deglet Noor, whole (USDA 0 0 0 0 2.7 5.5 Banana, fresh, med, 7" to 7 7/8" 0 5.1 0 0.1 11.8 3 Kiwi, fresh, 2" (USDA SR-23) 0 64 0 1 17.2 23.5 Cranberries, dried, swtnd (USDA 0 0.1 0 0.5 0 4.5 Strawberries, swtnd, fzn, 0 25.2 0 0.2 2.6 7 Broccoli, fresh (USDA SR-23) 0 20.3 0 0.2 14.3 10.7 Carrot, baby, fresh (Dole) 2 6.7 Day Total 1.6 122.9 4.8 3.7 94.1 582.4 Average Day Total 1.6 122.9 4.8 3.7 94.1 582.4 Day Meal Item Iron (mg) Magn (mg) Phos (mg) Potas (mg) Selen (mcg) Sodium (mg) Day 2 Snack Milk, goat, w/add vit D (USDA 0.2 51.2 406.3 746.6 5.1 183 Oil, flaxseed (USDA SR-23) 0 0 0 0 0 0 Yeast, nutritional, flakes (Now 0.1 53.3 3.5 0.8 Molasses (USDA SR-23) 0.2 8.1 1 48.8 0.6 1.2 Oats, rolled, old fashioned, dry 1.8 0 Coconut, water, fresh (USDA SR- 0.2 15 12 150 0.6 63 Cereal, granola, oats & honey 0.7 19.8 74.2 69.2 54.4 Date, Deglet Noor, whole (USDA 0.1 6.1 8.8 93.3 0.4 0.3 Banana, fresh, med, 7" to 7 7/8" 0.2 15.9 13 211.2 0.6 0.6 Kiwi, fresh, 2" (USDA SR-23) 0.2 11.7 23.5 215.3 0.1 2.1 Cranberries, dried, swtnd (USDA 0.2 2.3 3.6 18.2 0.2 1.4 Strawberries, swtnd, fzn, 0.3 3.8 7.6 62.5 0.4 0.6 Broccoli, fresh (USDA SR-23) 0.2 4.8 15 71.9 0.6 7.5 Carrot, baby, fresh (Dole) 0 15 Day Total 4.3 138.7 565 1740.3 12.2 329.9 Average Day Total 4.3 138.7 565 1740.3 12.2 329.9 Day Meal Item Zinc (mg) Omega3 (g) Omega6 (g) Alc (g) Caff (mg) MyFrt Day 2 Snack Milk, goat, w/add vit D (USDA 1.1 0.1 0.4 0 0 0 Oil, flaxseed (USDA SR-23) 0 4.8 1.1 0 0 0 Yeast, nutritional, flakes (Now 0 0 0 Molasses (USDA SR-23) 0 0 0 0 0 0 Oats, rolled, old fashioned, dry 0 0 0 Coconut, water, fresh (USDA SR- 0.1 0 0 0 0 0 Cereal, granola, oats & honey 0.4 0 0 0 Date, Deglet Noor, whole (USDA 0 0 0 0 0 0.2 Banana, fresh, med, 7" to 7 7/8" 0.1 0 0 0 0 0.4 Kiwi, fresh, 2" (USDA SR-23) 0.1 0 0.2 0 0 0.4 Cranberries, dried, swtnd (USDA 0 0 0.3 0 0 0 Strawberries, swtnd, fzn, 0 0 0 0 0 0.2 Broccoli, fresh (USDA SR-23) 0.1 0 0 0 0 0 Carrot, baby, fresh (Dole) 0 0 0 0 0 Day Total 2 5 2 0 0 1.2 Average Day Total 2 5 2 0 0 1.2 Day Meal Item MyDry MyGrn MyVeg MyProt ExFrt ExMeat Day 2 Snack Milk, goat, w/add vit D (USDA 1.5 0 0 0 Oil, flaxseed (USDA SR-23) 0 0 0 0 Yeast, nutritional, flakes (Now 0 0.1 0 0 Molasses (USDA SR-23) 0 0 0 0 Oats, rolled, old fashioned, dry 0 1.4 0 0 Coconut, water, fresh (USDA SR- 0 0 0 4.2 Cereal, granola, oats & honey 0 1 0 0 Date, Deglet Noor, whole (USDA 0 0 0 0 0.7 Banana, fresh, med, 7" to 7 7/8" 0 0 0 0 0.9 Kiwi, fresh, 2" (USDA SR-23) 0 0 0 0 0.7 Cranberries, dried, swtnd (USDA 0 0 0 0 Strawberries, swtnd, fzn, Broccoli, fresh (USDA SR-23) 0 0 0.3 0 Carrot, baby, fresh (Dole) 0 0 0.2 0 Day Total 1.5 2.5 0.5 4.2 2.2 0 Average Day Total 1.5 2.5 0.5 4.2 2.2 0 Day Meal Item ExVLMt ExMilk ExOth ExStar ExVeg ExFat Day 2 Snack Milk, goat, w/add vit D (USDA 0.8 Oil, flaxseed (USDA SR-23) 1.8 Yeast, nutritional, flakes (Now 0.1 Molasses (USDA SR-23) 0.1 Oats, rolled, old fashioned, dry 1.9 Coconut, water, fresh (USDA SR- Cereal, granola, oats & honey 1.4 0.1 Date, Deglet Noor, whole (USDA Banana, fresh, med, 7" to 7 7/8" Kiwi, fresh, 2" (USDA SR-23) Cranberries, dried, swtnd (USDA 2 Strawberries, swtnd, fzn, 0.7 Broccoli, fresh (USDA SR-23) 0.3 Carrot, baby, fresh (Dole) 0.5 Day Total 0 0 2.8 3.3 0.8 2.6 Average Day Total 0 0 2.8 3.3 0.8 2.6