Thursday, May 2, 2013

Another BIG DEAL!

Ella had her first (Stage 1) veggies yesterday!

Yum!  She looks Sweet Potato drunk, doesn't she?
This is a BIG DEAL!

For those that don't remember her background... I'm working on (okay, thinking about) a post for our upcoming terriversary, her NEC battle.  That story next week, I hope I can do it justice.

Ella had a portion of her small intestine removed with the NEC battle that nearly took her life.  And in her second surgery, when she was having her ileostomy reversed they had to take a good portion of her colon.  That's when her g-tube was placed and she got the Short Bowel Syndrome (SBS) diagnosis... ugh, that was a really bad time too...

Essentially, SBS babies, kids and people overall have a difficult time eating and processing foods.  Many babies/children end up with oral aversions, they don't eat by mouth.  Many have a difficult time gaining weight or balancing their nutritional needs.

Ella has been on her special formula since last summer when they took her off breast milk (OH, don't get me started on that again).  I have another story about this to write up with a happy ending, soon... soon...

She was able to start cereal a couple of months ago, I stuck with oatmeal due to the 'arsenic in rice' scares.  She had done alright with cereal.  She's done better with the Neocate Nutra (special formula that is thick/pudding-like).

And remember, she has the TUBE... we are directed to tube any amount she doesn't take by mouth so she gets her prescribed amount daily (35 oz).  People always comment about how big she is... well, there is a reason.  She has a prescribed amount she is required to intake daily, either by mouth or tubed directly into her tummy.  FORCE FED is what I frequently call it.

Graduating to veggies is a BIG deal.  She had her bloodwork on Sunday and it shows that she is absorbing her nutrients well, her electrolytes look good, she is NOT dehydrated.

I didn't get into the "mommy adjustments" I have made to the prescribed amount.  What this tells me that even with "mommy adjustments" (downward) she is absorbing and growing great!  I only imagine how big she would be if she got her FULL prescribed amounts!

The GI gave me the option to either begin reducing her overnight feeds (she's on the equivilant of 4 bottles overnight via pump/tube) OR introduce veggies.  I actually managed to get her to agree to both.  We are reducing her overnight feed by 1 bottle plus 3 ounces (adding the 1 bottle into the day) AND allowing her to begin 'tastes' of veggies every day (she actually said twice a day).

She advised to start with green beans because that has been reported to slow stooling (another SBS side effect, multiple dirty diapers daily).  I only had sweet potatoes on hand and our Speech Therapist came yesterday afternoon, so we started there.

SHE LOVED IT!

video


I'm so excited to see that she is happy with the introduction of her first 'real' food.  So many SBS babies don't eat, at all.  I can't wait to try more veggies very soon.

She is amazing!

Side note:  I have an appointment with the "other" pediatric GI practice locally in a couple of weeks to get a second opinion on how they would treat Ella.  She proves it over and over, she is not a 'typical" SBS baby, I don't want a doctor who treats her like one.

15 comments:

  1. Way to go mommy! You will always know her best. Way to advocate and adjust for her! And hooray for eating.

    I can only imagine your worries. I tried not to get too concerned when my son refused food for over a month (not a big deal when you consider his adjusted age, but everything feels like a big deal when it's your baby). Now he eats just like his sister (neither has ever refused a food). I wish you the same luck!!

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  2. That's so wonderful! Enjoy tasting life, Ella! You have an amazing mama! xox

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  3. Way to go Ella!!! Such a happy girl!

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  4. That video is precious!! Yeah, Ella for continuing to be a rock star!!

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  5. this is a fabulous post that made my day. Way to go, Ella!!

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  6. I loved watching that video. It put a huge smile on my face. Go, Ella!

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  7. So happy to read that she is getting into her veggies now. Go Ella!

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  8. She proves it over and over, she is not a 'typical" SBS baby, I don't want a doctor who treats her like one.

    Well said. I think many moms share this feeling (just insert any number of diagnoses). There is no "one side fits all" treatment for anything. Good for you for advocating and making "mommy adjustments".

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  9. Awesome! Also, I need to look into neocate nutra. Is it RX only, like Neocate? I'll be writing more about it on Tuesday, but there is a strong suspicion that Owen has a condition that may have him allergic to a lot of foods....he failed bananas this week :-( I'm still deciding what we are going to try next...something truly hypoallergenic may be interesting.

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    1. It is Rx only as far as I know. Our GI gave us 2 cans when I was trying to figure out what to do for a "smash cake" for Ella's 1st birthday... she's done really well with it so we have kept up with it as part of her ST/food introduction. I know fruits are a long way off for Ella due to the fructose... not a good match for a short gut. Sorry Owen failed bananas. Will look for your post next week.

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  10. Love your blog! Ella seems like a very strong little girl! Good luck with the food :-)

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  11. That's awesome! Go Ella! Such a cute video. :)

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