What the F****: Our FPIES Journey


A lot can happen in a couple months time. Last time I checked in, I was diving into "April Accountability" (which went great, by the way!) By simply stating my intention of moving my body more, I accomplished it. Having my intentions out in the open was helpful in keeping me accountable, which was the whole point, but things kind of derailed at the end of April.

June had a significant vomiting episode and we weren't sure what was going on, but in my gut I knew something wasn't right and we ended up at the ER. We thought we had a game plan and went on our way. Then it happened again at the beginning of May. After some back and fourth, we're 99% certain she had an FPIES reaction to being fed oats + avocado. A diagnosis like this is enough to make a Mama's head spin. We're grateful that so far, her FPIES reactions have only included profuse vomiting and haven't gone all the way to extreme dehydration/shock, but that's the path it can take, and for that reason, it's my biggest fear. 

There are a lot of things to be said about getting a diagnosis that remains to be somewhat of a mystery to the medical community. Most medical professionals I know have never even heard of FPIES. We are grateful to have a physician that is willing to look at and learn about what's happening with June, and has committed to staying as involved as we need her to be as we move forward in introducing new foods to our sweet little girl. We have a plan, we feel as informed as we can be at this time, and we have no choice except to move forward.

If I'm being totally honest and transparent, this diagnosis shook me up - big time. I was not, and sometimes still, am not doing well with it. Both severe vomiting episodes were in response to foods she had eaten several times in the past successfully (common of FPIES), so I was left with 100 questions - will the next 'safe' food she eats trigger her? Will it be only vomiting again, or worse? I feel like I went through the 5 stages grief. At first, I had a hard time wrapping my head around it, thinking "if it's so rare, how can it be happening to us?", and believed on and off that it's not FPIES, just fluke symptoms that are seemingly very similar.  That passed, and I just felt angry. Really, really mad and frustrated and anxious - it's not fair that everything about the way we planned to introduce foods to June has to change. I can't tell you how many times I have gotten mad at myself for introducing solids to her the way that we did - feeling like it's my fault, that I could have done something to prevent this, or all the ice cream I ate during my pregnancy is the reason for this happening (newsflash: it's not.) Then, the sadness and, I admit, jealousy. Seeing videos and photos of all of my friends babies happily devouring everything their parents are having for dinner - knowing we are so far from doing that with June. For example: if I make enchiladas and would like to share bits of it with June, I would have to first trial each single ingredient for 10 days - do you know how many things go into enchiladas? A lot. It will take me over two months to trial a dish that has 6 'new to June' ingredients to make sure she doesn't have a reaction to each ingredient before I can combine them into a meal. 

I'm working on acceptance. It's a process, and some days are better than others. We are so grateful that June seemingly has a handful of safe foods, both fruits and veggies and we're making sure they're for sure safe before moving on and introducing new things to her. It's going to take a long time. I keep telling myself, "it could be worse" - because it's true, it could be. She's not having FPIES reactions through my breastmilk, she's growing, healthy, and SO happy - all the time. You would never know we were dealing with this unless we talked about it - all good things. Despite all the things I'm grateful for, I'm reminded often by my best friend and sounding board that just because our reality isn't the 'worst reality possible', doesn't mean it still isn't stressful and impacting our lives. It's okay for me to feel feelings about this. It's okay to be worried, scared, hopeful, and confused - all at once. 

There are still a ton of unknowns we're dealing with and feeding her is, in a word, stressful. The reaction, if it happens, occurs 2-3 hours after ingesting the trigger food - so you can bet that in this time frame after I feed her, I'm a wreck inside. We don't leave the house 2-3 hours after she eats because I'm terrified she's going to start throwing up in her carseat and I won't be able pull over and help her. So we time everything around her meals, and wait, and hope for no signs of a reaction. I can't even describe the sweet feelings of relief - like I can breathe again - when we're past that 2-3 hour window. But, it's a cycle - and it's our every day reality. 

This change in our lives has forced me to look at all of my own shit, which I've done before, but the difference is that now, when looking at my own shortcomings, I have to actually deal with them. I can't ignore or push it away unwanted thoughts or anxieties because it's not about me anymore. This is all about June. She needs all of me, and she needs a Mama that can be present with her incase she gets sick - not a Mama that escapes mentally into a nervous, panic-stricken oblivion. She needs me to be present with her in moments when she's not well, but even more - she needs me to be silly, playful and fun during that dreaded 2-3 hour window instead of watching the clock and living in my own anxious thoughts. 

So, aside from the plan we made with our doctor, I've got my own self-care plan. You may notice I'm not on the schedule anymore at TuliVesi Yoga. I had to make the call to step back from teaching regular classes. I have expectations of myself when I step into the room to lead a class, and I'm not in a place right now where I can deliver regular classes that I feel satisfied with. My focus isn't there - instead of delivering a class I'm not proud of, I made the choice to step away. In doing this, I'm making more time for myself on my own yoga mat. I need to slow the F down. I need slow flows, restorative yoga, and meditation. I've also started acupuncture at Acupuncture of Marquette - after two sessions, I'm already noticing major benefits. I practically floated out of the office this week. 

Before our FPIES diagnosis, I was already struggling a bit with finding time for self-care. For all the reasons I've mentioned, it's time for me to care for myself so that I can be the best Mama for my June. I'll still be hosting Yoga & Hops once a month, an event I sooooo look forward to every month. 

Thanks for hearing me out. Part of my healing is owning our story and sharing it so that I can create connections with my community and can feel less often like I'm on an island on my own. XOXO. 

I now see how owning our story and loving ourselves through that process is the bravest thing that we will ever do.
— Brene Brown