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Sunday, February 24, 2013

Failure to Thrive does not mean YOU are a Failure.

 Failure to Thrive does not mean YOU are a Failure: 
And no, I am not just saying that to make myself feel better. Here's WHY:


Failure to thrive. 

To many, one of the worst "diagnoses" a mother can hear. To a mother, that immediately translates into "you are doing something wrong", or "you're not doing enough", or "there is something wrong with your baby"... 

Regardless, it's hard to swallow. As with anything, there are varying degrees. Some Failure to Thrive (FTT) babies are easy to spot; pale, lethargic, dry skin, sunken features. Others, look like my girls. 

Baby B

Baby A
 For those of you that don't regularly follow the blog, I do not have twins. Baby A and Baby B are 2 years apart- their nicknames for purposes of the blog merely coinside with their first initial. Baby A was born in 2010 and Baby B in 2012. Both weighed approximately 7 lbs at birth, and were full term babies. Baby A was delivered by scheduled C section and Baby B was a VBA2C.

Both healthy babies, and have had (knock on wood) no major illnesses to report. But both are small. Baby A, now almost 3 years old, has remained in the 2nd percentile. I many times, have found their obsession with her weight annoying, to say the least. After all, I figured, these "percentiles" are based on fat, formula- fed babies anyways! EBF babies are supposed to be smaller. AND add to that, that Sissy (my 16 year old stepdaughter and their half-sister) is a size 00. I mean, a TRUE 00! And this is a girl who eats well, regularly, and is an avid athlete. So I figure, my husband just makes small babies! 

SO I shrug them off until Baby B comes along. They gave me until she was about 4 months, when they referred me to another Doctor in the office. 

"But she's exclusively breastfed" I told them. "Her sister has always been small and she is FINE"...

Baby A at about 4 months- the original face of NurturingtheNaturalMama

Baby A 2011
Baby A 2012
 She's a happy, healthy girl after all! (And beautiful, I might add! ;)) But Baby B had alternating visits of gaining weight, staying the same, and then losing weight. That is where the weight obsession came in. 

Adding formula, adding cereal (bleh!), and tracking everything! All my kids have been tandem nursers and formula drinkers, but I was really hoping that Baby B, baby #3, would be EBF for as long as possible- so this was a bit of an ego blow... 

But, of course, the baby's health was first. They ran a battery of tests at about 6 months of age, when she continued to lose weight, despite her being my best nurser and regular bottle feedings.



She looks like a "normal" baby, right? No sunken features, you can't distinguish her ribs, she has met all of her motor skill and cognitive milestones, her skin isn't peeling, and she is not anemic or excessively pale- so how is she not gaining weight? In fact, how is she LOSING weight? 

Baby B January 2013 
 At almost 9 months old, Baby B weighed just 10 and 1/2 pounds. 

She has seen an immunologist, and a gastroenterologist. After our recent appointment with her pediatrician, they are contemplating placing a nasogastric feeding tube this week. She still "looks" wonderful, but has lost more weight despite adding even MORE calories! 

Having been in the field of veterinary medicine for almost 12 years, I have seen many an NG tube placed in cats. The thought that I would ever need one for one of my children never crossed my mind. NG tubes involve using a syringe or pump to "pump" food or formula directly into the stomach. They do not "hurt" (although I am sure they're not comfortable either), and this allows caloric intake for those who will not or cannot eat, or aren't eating enough. 
In felines, a slurry of wet cat food, usually Rx diet a/d is used. For baby B, it will likely be formula or breastmilk. She self weaned several weeks ago, but if the tube is placed, I will opt to pump again to build my supply and start using breastmilk as soon as possible. Breastmilk has some critical healing properties, so that would be my optimum choice. 

In the meantime, we have been asked to take precautions because of her immune disorder, so we are to wear masks or gloves if we are sick; we have to start using hand sanitizer before handling her, and she is not to have any contact with any other kids until she sees the gastroenterologist again in an attempt to spare her a chest infection. Any company to our house will be asked to dawn the mask and gloves as well. 



We are going to be one fashionable family!! ;)  

So WHY am I telling you all this?? Part of it is because it is easier for me to process things when I write them out. I figure this blog will be, in some way, a documentation of my kids' childhood and show them what was important to us at the time. Additionally, I figure if I am going through this, there must be SOMEONE else going through the same thing. I hope that they will read this and at the very least think; "WOW, I am NOT alone!"

I obviously don't have any answers for you, or any nuggets of wisdom since I am in the midst of this myself... but I will keep blogging as we get more answers (assuming we get some). And in the interim, we will continue to enjoy every moment with Baby B, as we do with all of our kids. Her condition is certainly not life threatening, at least at this point, so we are so very thankful for that. We look to each other and to God for strength and faith during these trying times; as some days seem so emotionally and physically exhausting.

We have an appointment with a naturopath this week as well, so we will see if that brings any new information for us and Baby B. Thankfully, we love and trust our pediatrician (it took us 5 peds to find them back when Spiderman was born;)) so we know we are in good hands.

If you have a Failure to Thrive baby, you can find more information HERE

*You can find more information on Selective IGA Deficiency HERE 

* and more information on Celiac Disease in Infants and Children HERE 

4 comments:

  1. That's really challenging. Thanks for sharing your story, and I wish you all the best as you continue working this out. I love your title, because it's so true.

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  2. Thx lauren! Gdlk w ur little guy too! Baby b ended up having celiac!

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  3. Hi Theresa, how are you beautiful little ones now? My son uses a g-tube for failure to thrive, short bowel and gastroparesis. It is so challenging and difficult, thank you for sharing your story.

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