Saturday, June 2, 2012

Chasing Zebras

Well as I am sure many of you know or have guessed, we have now welcomed our newest little addition into our home. Another little girl! My poor husband-- he is so outnumbered. At least he is surrounded by beautiful women, right?!

B is the best big sister you will ever hope to meet (though I am quite biased). She loves kissing Baby C's little toes and even helps with her baths. As a true FPIES kiddo, she is very concerned with C's poops-- haha-- though I promise you, other than our dairy debacle, the poops are fine!

This brings me to my point of this post-- chasing zebras. How do we as parents turn off that setting? When your child has been diagnosed with a rare illness and even more so, a rare degree of severity of that illness, how do you become accustomed to not looking for zebras, not looking for a rare illness to rear its ugly head once more in other children down the line?

I have been struggling with this for most of C's pregnancy and now her early infancy. Trying to walk the line between determining what is "age and stage" vs. "not all that normal." We have discovered that there is certainly something going on with C and her response to foods in my milk. I am eliminating the following at this time: dairy, soy, rice, barley, oats, white potatoes, sweet potatoes, avocado, all beans and tomatoes (though will reintroduce to see-- these are questionable), eggs, all meat (simply due to being vegetarian), peanuts, tree nuts, all squash. It honestly isn't that bad, it is just complicated. She is still struggling with reflux-- silent and "not so silent"-- but I am trying to stick to eliminating everything that is causing outright vomiting right now, and then if we can get her to be stable for a little bit, then I will work on refining my diet a bit more if I can. I am also hoping that some of these foods clear my system in another week or two and maybe some things will resolve independently of me needing to cut more out of my diet.

But the reward is that C has calmer days, less crying than B ever did, and other than responses to a few of the foods that I have since eliminated, limited lower GI responses aside from extreme gassiness. I do feel like we are more in control of the situation and I do feel that for us, starting the elim diet before giving birth did help a lot in this process.

As we move through this, even though we are identifying things that certainly do not seem normal for "age and stage," I am trying to be conscientious of not jumping to FPIES with every hiccup, every blowout (even blowouts can be normal of course!), and every fussy night. I want so badly for C to breeze through her infancy, to have a relatively normal experience with doctors, food, growth, and so forth. I do however understand that as we trying to not jump to conclusions, having survived B's infancy certainly gave us tools that are priceless in helping us begin to navigate C's early days.

So for us I suppose, the answer is to acknowledge the possibility of zebras, to remember the tools and lessons that we have learned, but to remind ourselves to breathe in between all of this. To leave space for simply "age and stage," to hope for normalcy. And in the meantime, I will sit back and enjoy B learning how to love her little sister, enjoy those moments of infancy that we didn't get with B because of not knowing how to control some of the early symptoms that she had, and thank heavens for the fact that despite losing my beloved baked potatoes, neither one of my kiddos seems to have issues with pure cocoa. That is what I call the fates throwing us a bone. And on that note, I am off to find some ice water and enjoy life chocolate chips.


  1. what an amazing mama to juggle all those eliminations in an effort to keep breastfeeding. YOU GO! what a lucky little girl(s) to have such a dedicated mama.

  2. I am dealing with my FPIES (GI Dr. believes it is but sending us to and allergist)son who is now 10 months old and is still breastfed, he has been and is super sensitive to foods I eat, including Chocolate, quinoa, teff well most gluten and non gluten grain so you. The funny (not actually) thing is that I have I always said I am not a chocolate person, but now that I can not have it (or very limited amount infrequently)I want it BAD. LOL the whole diet elimination has been overwhelming since he has been so sensitive,so I understand and kowing that you are taking care of 2 babies now... shwooo, great job momma!

  3. Thanks, mamas! Yes Whitney, the elim diets do take some getting used to, for sure! I will eat a chocolate chip for you--- I am guessing you have tried the dairy and soy free ones already (Enjoy Life brand)? Those and basic hershey's baking cocoa are the forms of chocolate that I can safely eat, if it at all helps. I hope you can find some safe alternatives in time! Good luck to you!!