Wednesday, November 23, 2011

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. 


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