Tubie BFF photo shoot

First I want to say that Whitney finally got approved for the synagis shot!  The way way expensive one that prevents RSV!  She got her first one tonight.  After the surgeon, GI, cardio, and pediatrician writing  notes to the insurance company!  Yay!  Now I feel more comfortable that she won't get sick the year either! 

I'm still in the trial and error phase of this whole Blenderized Diet for my tubie Whitney.  I keep making too much volume out of the calories she needs.  I have finally completed weaned Whitney off of the night drip or night times feedings of formula.  Now I'm feeding her 4 bolus meals of 6 oz each (180 mls) everyday. At 9 am, 1 pm, 5 pm, and 9 pm (she is asleep for the 9pm feed).  She also needs more fluids so last night I tried a slow water drip from midnight to 7 am and she did really well with that!  It was about 200 mls of water...very wet diaper in the morning!

The Regsitered Dietician said that a variety in Whitney's diet is a very good idea, I'm just still worried that she's not getting enough calories.  For example, Quinoa (keen-wa) has a lot more calories than brown rice, but they are both really good sources of whole grain.  But I wouldn't eat quinoa every single day and neither would a kid eating by mouth!  The RD said that as long as she's gaining good weight, then it's all good.  So I guess we will see how this is going when Whitney gets weighed next week, I'm very much want to know how much she gained...or lost.

  Whitney is eating way healthier than a regular kid could too.  For example, the other day she got brown rice, avocado, pumpkin, sweet potato, banana, cucumber, pear, blueberries, goat milk, pro biotic, multivitamin, flax oil, and nutritional yeast.  Of course it made way too much volume.  And another day I blended quinoa, chicken, broccoli, carrots, cucumber, banana, avocado, sweet potato, tomatoes, and goat milk with all the other stuff listed earlier.  I'm definitely grateful to be able to feed my daughter real food!

I've heard everyone say that there is no wrong way to make a BD but that's not entirely true!  Just because kids like to eat chicken nuggets and french fries doesn't mean you should blend it up for your tubie! Haha.  Or like a bunch of empty calories like crackers and chips and cookies!  Anyway, my goal is to just make sure I give Whitney her grains, fruits, veggies, dairy, and meat and a little oils.  I'm not saying that mouth eaters don't eat this good stuff, because I'm sure they do too!  Just not a large variety.

Whitney is still throwing up at least once a day.  So no, tube feedings are not perfect nor ideal in any way!  The RD told me that she shouldn't throw up because it's real food.  Guess she was wrong there.  And I don't really know why Whitney is so vulnerable to vomit!  It pretty much sucks. 

To figure out how many calories kids need daily: 

Take the weight in pounds (lbs), ex Whitney is 18 lbs 10 oz which is 18.62 lbs

then divide that number by 2.2 which equals 8.5 kilograms (kg)

She needs 100 kcals per one kg.

100 * 8.5 equals 850 cal a day

Now that number is to maintain and steadily grow.  So it is safe to say that my FTT child could use 900 to 1000 calories a day to gain catch up weight.  So when Whitney reaches 20 lbs she'll need about 900 calories a day. 

Anyway,

Here's the fun part about the tubie Best Friends Forever!  My friend Rachel, has a friend Alix, and her daughter, Lily, has a feeding tube! I meet them earlier this year when both our girls were on NG tubes.  Now me and Alix are pretty good friends and love to talk about our miracle babies!  Lily is 6 months younger than Whitney but they got along really well!  So far Lil is undiagnosed but has allergies among other GI issues.  She is so cute!  I love how they are opposites in there hair, eyes, and skin color!

Whitney was doing Pat a cake Pat a cake....and throw it in the oven for baby and me!  It was the only way we could get them to look up from the book!  So adorable!

 Wearing matching skirts that Rachel bought for them! 

They loved laying down on the cool wooden floor!

Aww BFF

They were so nice to each other! It was so sweet!

Lilian

Whitney K. 

Gaining weight on BD

Whitney weighed 18 lbs 9 oz on Tuesday 11/15.  She gained 8 ounces in 2 weeks!!

We just got the awesome Vita mix blender at Costco the other day during a their 'roadshow'.  My dad saw it and asked me if we wanted it now and if he should get it.  So I called up the company and asked about their special medical discount.  They said that a Doctor has to write a note on his letterhead about the child's condition, why the blender is needed for them and a signature.  Pretty simple.  They would fax it to the company, then the company said they would call and set me up with a reconditioned blender for about $300.  Pretty good deal.  But reconditioned means that they would send me one that has been used for their roadshows.  Unfortunately I have issues with anything used.  So my husband agreed to get the one at costco for $435. 

The blender has been working really well.  My first blend consisted of

1/2 c. cooked Quinoa

1/4 c. frozen green peas

1/4 c. steamed sweet potato

1/4 banana

1/4 c. thawed strawberry (3)

8 oz Goat Milk

It didn't put any meat in it because I think that that would give her too much protein.  It made 16 oz of formula and was a thin consistency.  I think I blended the Goat Milk a bit too long because it was kinda frothy.  Whitney threw up the first time she got it.  She was playing outside and chasing the dog, just got too wilded up I guess.

The next day I made: the same Quinoa, 1/2 c. frozen mixed veggies (broccoli, carrot, celery, and edemane), 1/2 c. mixed fruit (strawberries, blueberries, raspberries, and pineapple), and 8 oz GM

The first time she threw that up too!  But that's because I gave her too much.  SHE actually signed to me that she was ALL DONE at 5 oz into it.  She's never done that before so I though silly girl, not yet!  So I gave her the last ounce.  The she took a 30 min bath, she was upset to get out and started to cry and got that look on her face and threw up all over her towel and into the tub!  Gross!  Bathed her again she then she took a three hour nap! I feed her the blend for the next two meals and again she told me all done and this time I listened!  I stopped! 

Whitney's speech therapist came over during a feed and Whitney loves it! She's coming along good in her speech and learning new signs.  Basically Whitney has lost some oral motor skills because she doesn't use her tongue and lips like oral eaters do. 

Also, I got a phone call from Ellen the nutrionist/RD in Tuscon saying that the OT, Marsha Dunn Klein is not seeing patients right now for personal reasons..... okay, I've been trying to get in to see her again since august!  Whatever.  So  Ellen said that we could just talk on the phone about Whitney's blenderized diet instead of us driving down there. So I still have a bunch of questions and will ask her on Monday. I let you all know the answers too!  I'm not going to try to get in to see Marsha though. 

Working on Blenderized Diet

WELL for the past couple of weeks I've been giving Whitney some blended foods, mostly from jarred puree's that I already had. I'm doing more research about blenderized diets. There are so many different recipes out there and I was very confused on which one to base mine from. I finally figured it out and it's very simple.  Figure out what your child's daily nutritional needs are, choosemyplate.gov is a great source! It will tell you how much of each category they need based on their height, weight, age, gender, and activity level.  It gives lots of examples of that food too! This is the basic's that every blend I've seen incorporates.  Every one needs:

GRAINS

VEGETABLES

FRUITS

DAIRY

PROTEINS

Whitney needs 1000 calories a day. 

She also needs 3 oz of grains:ex: brown rice, rolled oats,quinoa, millet, couscous, wholegrain barley

 1 cup veggies: ex: spinach, broccoli, tomato, carrots, red or green peppers, squash, peas, zucchini

1 cup fruits: ex: banana, apple, strawberry, blueberry plum, pineapple, peach, pear, cantaloupe

2 cups dairy: ex: Milk (Goat or Cow), Cheese, yogurt

and 2 oz proteins: ex: chicken, turkey, pork, beef, salmon, ham, tuna, egg, any nuts

She also needs probiotics and multivitamin daily. She'll also require about 1 more cup of fluids daily.

So now the challenge is to figure out what goes best with what (taste and nutrient wise)!!  It's very important to make sure that tubie's get enough (and not too much) of all the nutrients!  I also think a variety will be great! 

I have this program called mydietanalysis.com  which I got from being in my food and nutrition class.  I costs money, I'm not sure how much,  but if you really want to know exactly what is in what then it is a great source! 

I've already come up with some ideas to blend and I put the foods in the diet analysis and none of them quite equal up to 1000 calories.  So I will ask her dietician about it when we see her in a couple weeks in Tuscon. Plus I have no idea how much volume it will produce so I predict a lot of 'trial and error' as usual! There are so many options. You can do one or three or even 7 different combinations! I will probably do 7 different blends and rotate them every day throughout the week! Make it the night before and refrigerate it for the next day.

Meanwhile trying to wean Whitney off of the night time feeds. I want her to take all her boluses during the day like a normal kiddo!

 I plan on purchasing the Vita-mix 5200 standard blender soon!  It's about 450$$ and buying all this food will be expensive (compared to the free, ins. covered, formula)!  This adventure will be exciting and frustrating I'm sure! But well worth it!  I bet you'd wish all your kids (and you) could eat this healthy!! 

I figure that once we get this well on the way and with no vomiting and healthy weight gain... then I will focus on weaning her off!