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Special Needs Sunday: Formula for feeding tubes & “Failure to Thrive”

20 Jul

One of Jenna’s official diagnoses is “Failure to Thrive.”  It sounds horrible and hopeless and more like something someone in a third world country might be suffering from.  As a parent, it’s hard to get past the feeling of guilt – that somehow your baby is failing to “thrive” and grow as a result of some sort of failure of parenting.  In actuality, it’s just some words that describe the fact that Jenna’s not gaining weight and “typically” growing according to established norms.  I try to remember that, but it’s hard.  And I worry.  A lot.

For most of her life, she wasn’t even on a growth chart for her weight, and we were thrilled when she reached the third percentile.  Then she got stuck there.  It’s hard for anyone to imagine (unless you’ve been there) how most of her life (and ours) for her first two years revolved around her feedings, measuring what went in, catching and cleaning up vomit, fretting about the amount that she vomited, tracking her responses to various foods and formulas, keeping track of poops and pee, battling recurrent diarrhea, and dealing with all of her feeding equipment.  That being said, I thought I’d share our experiences with different formulas, in the hope that maybe it will help one of you.

We started on Neocate from the NICU through her first birthday, and struggled with ongoing vomiting and diarrhea issues.  We’re talking SERIOUS issues that resulted in a recurrent raw butt, and vomit with every feeding and all through the night.  Our gastroenterologist seemed unfazed by my concerns with an attitude that seemed to be, “this is normal for kids with her condition.”  Because I was at my wits end and desperately worried about my baby, I started researching on my own.  I read a lot about Peptamen Junior and successes with kids with short-gut due to better absorption.  I pushed and pushed with our gastroenterologist about switching formula with no luck, so we finally made the decision to switch to specialists at Children’s Hospital Boston for a second opinion.  It meant a LONG trip to see them (and many return trips since), but we are SO glad we switched.  They listened to our concerns and made the switch to Peptamen Jr.  We immediately noticed MUCH less vomiting and NO MORE diarrhea.  BUT, from her first birthday to her second, she pretty much gained no weight.  She stayed right at or around 20 pounds for one year.  In March of this year, at the recommendation of our fantastic docs in Boston, we switched formula once again, this time to Resource Just for Kids with fiber (RJFK).  In just six months since the switch, she’s gained 5 and a half pounds.  Hallelujah!

RJFK is lactose and gluten free (it does contain casein and whey proteins), the fat content is made up of oleic sunflower oil, soybean oil and medium chain triglycerides (coconut and palm kernel oils), and it has 1.5 calories per mL.  You can read more about the nutritional content and analysis here.

I know that each child is different and I’m in no way trying to replace any doctor’s advice, but I feel compelled to share our success with this formula and at least let you know about it so that you can research and determine if it might be right for your child too.  It comes in handy little boxes (like juice boxes) with a bendy straw and a friendly looking dinosaur printed on the label.  Jenna calls it “dinosaur juice.”  This is also the first formula of any we’ve tried that she’s been willing to take by mouth (we get the vanilla flavor).  She never takes much, but she’ll at least give it a try and swallow it instead of just spitting it out. 

Hooray for Dinosaur Juice!  She’s doing so much better now, and I’d say she’s thriving just fine.  We won’t know if she still meets the criteria for the diagnosis “Failure to Thrive” or not until our next appointment in Boston in September.  It will be a day for celebration when that label is removed, but I think it will take a while longer for all the mommy fears and worries to settle down.  Once you’ve been in survival mode for so long, it’s a little hard to trust that things are OK without wondering when the next “bad thing” will happen.  It’s so great to see her little pudgy, toddler tummy developing, though, that I can’t resist the urge to plant a few raspberries on it.

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5 Comments

Posted by on July 20, 2008 in G-tube issues, Jenna, Special Needs

 

5 responses to “Special Needs Sunday: Formula for feeding tubes & “Failure to Thrive”

  1. Liza R

    July 21, 2008 at 9:53 am

    Great job! Through our trials and tribulations, the single most critical thing I’ve learned is the importance of taking a proactive role in my (and my family’s) medical care. I always do my research, and have even switched doctors who can’t be bothered to accept that I’m going to play an active role in my own care. When I find medical professionals who have do accept it and are open to working with me instead of talking at me, it usually pays off in spades.

    Way to go! Fingers are crossed!

     
  2. psychmamma

    July 21, 2008 at 5:55 pm

    Thanks Liza!

     
  3. leslie

    October 3, 2008 at 11:15 am

    I have twin sons, born premature because one, Nick, wasn’t growing as he should. (His heart was stopping, emergency c-section ensued, crash carts brought in.) Nick was under 2 lbs at birth and while he’s come a very long way now at one 1/2 years of age, he has also been diagnosed with “failure to thrive” and our lives revolve around trying to get him to eat and to not throw up. He has a feeding tube and he gets a majority of his food via pump during his sleep. He recently has begun vomiting early in the morning, and it’s really scary because the food is partially digested and very, very thick and he sleeps on his back,

    Anyways, apologies for my longwinded response, which was, in fact, all about my situation lol. I just wanted to let you know that your posting really really hit a chord here. I’d love to hear more about how you and yours are doing.

     
  4. elizabeth

    July 22, 2011 at 12:56 am

    Oh, my goodness…I just found your blog, and we are so much alike! I remember reading about parenting with my first baby, not understanding how “failure to thrive” happens…just feed the baby, right? Well, my second child (also Jenna) has been “failure to thrive” since her heart defect was detected at two weeks old….she has been on a feeding tube since she was five months old and just turned two! Your Jenna is so precious..and so blessed to have you as her mom! Keep up the good work!

     
  5. PsychMamma

    July 22, 2011 at 9:38 am

    Elizabeth –

    So glad you found me! Would love to learn more about your journey, but it doesn’t look like you have a blog. If you DO, please leave a link for it and I’ll come and visit! Also, you are welcome to email me anytime!

    psychmamma1 {at} gmail.com

     

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