Lactose Intolerant!! Needs New formula!!



Last Friday I received a phone call from Whitney's GI Dr. U.  She said that all of Whitney's labs came back normal expected that she tested positive for Lactose Intolerance.

Crazy huh?  I suspected that all along, the Goat's Milk is the culprit!  They don't know when it started but I'm sure she's been lactose intolerant for a least a year now.  :(  NO more Goat Milk or any milk for Whitney!  They say that since this intolerance started at such a young age that she might be Lactose intolerant forever.  Or maybe she will grow out of it. 

We don't really think that Whitney nibbling on some cheese or cheese flavored snacks will upset her stomach.  But for now, and for a while we will steer clear of those things!  A while ago, Whitney loved yogurt and would eat quite a bit of it.  It always made her sick and vomit afterwards. 

Why didn't they test for this before or even bring it up?  Who knows!?  Why didn't they suspect it or test for it earlier?  Who Knows!?  I'm just so glad we got a good GI doc on our team finally! 

Since I received that news,  I threw out Whitney's Blenderized Diet with Goat's Milk and switched to Rice milk for a few days.  A few days of a clean baby and floor!  AKA No vomit!  I just gave her poor belly a rest and gave her some fortified Rice milk with seeds and oils to increase the calories.  I also gave her lots of jarred baby food purees.  The problem with that diet is that it's not enough.  It was okay when she was under one, but she needs a lot more to grow.  Whitney needs a better source of protein, carbs, and fats. 

Whitney fits in a size 6M pants! 

So rice milk isn't really milk and it can't replace milk for a toddler unless they can eat a lot of meats, fish, and eggs.  I'm sure I could even blend those things up to a liquid (kinda gross and smelly though).  But the nutritionist and GI dr.  want to try a new formula called Compleat Pediatric.  It has some real foods in it.  From a medical stand point they just need to make sure Whitney (who is extremely underweight) is getting all the nutrients she needs.   And I completely agree with them at this point.  Although I'm sure I could do it with a blenderized diet,  I don't want to risk it.

I was so looking forward to making my own Rice Milk (which is pretty easy and fun), and my own Oat milk, and Quinoa Milk.  But it's just basically watered down grains. How or why is it even considered milk?  Plus I just bought a bunch of frozen veggies and fruits to puree.  But this formula is just a bridge.  It needs to get Whitney gaining weight!

So far she has been tube feed with it five times.  First at dinner time last night.  Then around 11pm.  She threw that up and we were pretty sad about that.  So I actually stayed up and feed her it again around 12:45am so that she would be so hungry.  Then she got it for breakfast this morning.  She had a bath.  Tube feed three hours later and went to bed.  With no vomit!  I have to give her 5 ounces 6 times a day for her to get about 900 calories a day.  It is thin enough to go through the pump and bag,  but I'm so use to doing bolus feeds via syringe.  I have to sit with her at the table anyway so it's just easier to not mess with a pump that always errors and such.  Doing this formula is a little to easy on my part though!  I still wish I could blend up her foods! 

I'm so relieved that this might work well for her.  We are still considering doing a GJ tube but not any time soon.  The dr.'s were even talking about doing TPN for Whitney, which is total nutrition via IV!  Scary!  But we really need her to grow and development normally, mentally and physically.  I'm willing to do anything for her at this point.  But so far this formula seems to be working well, but I won't jinx it,  it's only been half a day!! 

Now I'm just dying to post a couple of candid pictures from our Three Tubie Girl BFF's Photo shoot last weekend.  It just a sneak peak of how cute they are!  The professional pictures are so much better so I will wait to post those and the whole adventure when I get them!  We all had so much fun! 

Whitney loved playing in the dirt and flowers!  They are all such princesses!



 Whitney was very entertained tearing the flowers apart,  Raya was chewing on the balloon, and Lily was very fascinated by her! 

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.