FPIES Archives - Our Stable Table

One More Day {A Pumping Story}

August 4, 2016 by Carrie 1 Comment

In case you haven’t heard, this is World Breast Feeding week.

Every year for the last three years, it’s rolled around and I’ve had many, many feelings.

But mostly, I feel shame.

Before my son was born, I planned to breastfeed. I took all of the classes, bought all of the nursing bras and tanks and Bamboobies and nipple creams. I even had phone numbers for two IBCLCs.

I was scared but determined.

I was ready.

My son was born at the crack of dawn and latched quickly. It hurt, but it was okay. He nursed all day and then into the night. Then he vomited profusely, covering my husband and me in colostrum and amniotic fluid. Then we all slept.

The next morning, he wouldn’t nurse. He was tired. I was tired. Sitting upright to nurse was extraordinarily painful for me, and I felt every ounce of the 3 liter blood loss I suffered during his birth.

That second day, I pumped colostrum and my husband fed it to our baby with a dropper. He perked up, but not much. Soon after, my newborn baby stopped breathing while feeding at my breast.

He turned blue.

As a trained medic, I knew what to do. I breathed for him. We called 911. He began breathing again.

The ambulance came. He stopped breathing again and continued to stop breathing every 10 minutes for the next 16 hours.

Our tiny baby boy had suffered a stroke.

Over the course of the next week, we would learn that a clot traveled through his body to his brain and destroyed cells in two areas in his right hemisphere. I would sit painfully upright in a wooden chair next to my son’s bed in a tiny NICU room where he teetered between heaven and earth.

And I pumped. Every three hours. I willed my body to make milk to feed him because when he decided to stay here with us, he would be hungry. That was a thing I could do. That was THE THING I could do.

The stroke left the left side of my baby’s body weak and slow to react. We did all of the home therapies the hospital showed us. I tried to latch him to my breast but he was unable to form a seal with his mouth because of the muscle weakness.

I was relieved. Deeply, shamefully relived. Because every time I held him to my body, I felt the terror of his near-death shoot through my body like ice water. Holding him to my bare breast sent me into a silent, self-loathing panic and all I saw was his tiny body turning blue.

So, I pumped. Every three hours around the clock.

When he had recovered enough muscle tone to nurse, he looked at me with fear in his eyes and screamed. He was terrified, too.

I passed him to my husband and pumped.

I accepted this breastfeeding failure. And the inadequacy began chipping away at my soul.

A few months later when he was diagnosed with a rare food allergy syndrome and it became clear that he would need my milk for many more months, I cried. Huge, selfish, shameful tears rolled down my face and onto my chest. I could not fathom pumping for another week, much less an undetermined amount of time.

As summer came, so did chronic mastitis. My boobs were done. I did all the things I was supposed to do to prevent it, but after 13 months, living on a 12 food elimination diet to keep my son’s profound food allergies in check and unrelenting stress, my body wanted to be done. But my baby wasn’t. I was still his sole source of nutrition.

Even if I wanted to quit, I could not.

I put a sticky note on my breast pump. It said “One More Day”.

That was my mantra in the morning during my first pumping session. It turned to “one more pumping session” and “5 more minutes of pumping” on hard days.

I watched my son grow as I sat on the couch and pumped. As my husband and friends fed my son the precious gold that came at a very dear cost to my mental, emotional, and physical well-being. I wanted this part to just be over.

And I felt the shame wash over me again.

My final pump session was not the wild, freeing, jubilant affair I believed it would be. After 21 months, I put that electric bastion of failure and disappointment in the closet and whispered “fuck you”.

Then I whispered it again.

Fuck. You.

To the pump.

To the closed closet door.

To my breasts.

To my kid.

To FPIES.

To the stroke.

To God.

And then I put it all away.

This week, I opened up that closet and took out my pump. I looked at it with indifference. It was a tool, it was not my captor.
Then the ghost of the shame I’ve been carrying around all these many months reminded me that our story isn’t over yet. There is redemption in this. My pump made it possible to take exquisite care of my baby. It gave me a reason to continue living.

It was a literal saving grace in the midst of the most traumatic time of my life.

The shame is transforming, and transitioning into pride. I did that. Every three hours. Every damn day. For 21 months.

The “fuck you” has turned to deep, unspeakable gratitude. Gratitude for these breasts, that pump, and my healing, thriving 3 year old. Gratitude to God that I get to be his mom.

To all of you mamas making great sacrifices for your babies, no matter what those sacrifices are, you are unbeatable warriors and tidal forces of love. The world and your sweet babies are lucky to have you.

You can do this.

One.

More.

Day.

Love,
Carrie

A Food-Free Halloween Treat Guide {Teal Pumpkin Project}

October 22, 2015 by Carrie Leave a Comment

A couple of weeks ago, Ashton Kutcher tweeted this:

And my heart skipped a beat. Why? Because people are starting to catch on to the Teal Pumpkin Project.

As a mom to a small child with profound food allergies, I get a little terrified around the holidays. Halloween is the beginning of a challenging food season for our family. Seasonal treats are everywhere, and impossible to ignore. As a healthy adult who tries to avoid sugar and can’t tolerate wheat, I find it hard to abstain. It’s an issue of willpower for me. But for my son? It’s a matter of life and death, or at minimum, a trip to the ER. All that separates him from a potential terrible reaction is our vigilance and the respect of strangers.

I would like to say my son is part of a small group of children, but he’s not. Food allergies in children have increased exponentially in the last 15 years, and now 1 in 13 children has some form of diagnosed food allergy here in the U.S. Those numbers are only rising.

Peanut allergies get a lion’s share of the food allergy talk, as it should. Some people are so sensitive to peanuts that even a trace of peanut dust can kill them. Unfortunately, peanuts are not the only food that cause deathly reactions from trace amounts. Wheat, dairy, eggs, soy, corn, oats, cinnamon, bananas, peppermint, and many others are just a few that have serious consequences for those who are allergic.

Because we want to keep our kids safe, but also include them, we are joining the Teal Pumpkin Project this year. Here’s how you can join us:

Paint a pumpkin teal, and put it on your doorstep with your other pumpkins. Kids with food allergies know they can come to your house and get a safe treat, and THEY WILL!
Offer trick-or-treaters a choice of candy or non-food treats. Kids with food allergies are often singled out for something they can’t control, and feel excluded and embarrassed because of their allergies. Giving all the kids a choice makes it easier for them to be safe during Halloween festivities without shame.

I know some of you amazing, non-allergy friends want to participate but might not know what give out instead of candy. This is a new-ish thing, so I’m putting together a handy little guide to help you navigate your Teal Pumpkin Halloween.

Please feel free to grab this image and share it! Keep it handy and ask questions here or over at FARE. They’re the geniuses behind #tealpumpkinproject and we are so happy to support this awesome movement.

Also, don’t worry about getting the color exactly right or painting it pretty. The message is the most important part! Thank you for keeping our kids safe this season

Funny Tricks and Food-Free Treats,
Carrie

Our janky teal pumpkin. As it turns out, I'm much better at cooking the food than painting it. — *Our janky teal pumpkin. As it turns out, I’m much better at cooking the food than painting it.*

7 Speedy Self-Care Hacks for Busy People

October 12, 2015 by Carrie 1 Comment

I loathe the term “self-care”. I’ve never been a huge fan of it, but now as a mother, I super dislike it. I support it. In theory. Taking breaks to rejuvenate and come back to life as a better person? Sign me up. A massage? Sign me up twice. A long hike in a forest? I’ll get my boots! A getaway with my husband? TELL ME MORE.

OrcasPanorama — The ideal setting for the best self-care ever of all time.

But here’s the thing with self-care. It doesn’t always look like a massage or pedicure or magical trek through the woods alone with only your (greatly neglected) journal and a Lara Bar to keep you company. And it almost never looks like a relaxing, kid-free trip somewhere else with my husband because it’s expensive and takes many elements of planning and, uh…it’s expensive. It could happen, but the reality of securing childcare, paying said childcare, going on the trip, taking time off of work, paying for lodging and food and travel? It’s pricey and time consuming.

The bottom line is this: Self-care can sometimes feel like a privilege instead of a necessity for mental and emotional health.

It doesn’t matter if you are in a committed relationship, a single person, a parent, a single parent, a grandparent, a circus performer, totally bankrupt, rolling in Kanye amounts of cash, worked to the bone, a teenager or college student, whatever. YOU NEED TO TAKE CARE OF YOURSELF. Instead of carving out an hour, a day, a weekend, or any other difficult amount of time, focus on small things. It doesn’t have to be time-consuming or spendy. Taking care of yourself can be simple, free, and take 30 seconds or less.

Pee first. Whatever you have to do, it can wait 30 seconds while you pee. Screaming kid? I get it. Pee first. You have to start dinner right this minute? Pee first. You need to take a call? Send it to voicemail and call right back after you pee first. Because peeing is important to your well-being.
Slip off your shoes and feel the grass. When was the last time you slipped off your shoes during your lunch break and stood in the grass? Never? Well, start now. Let your kids play at the park or in your yard and sip your coffee with your shoes off for a minute. Enjoy the way the grass feels between your toes and the soft earth beneath you.
Breathe on purpose. Just take a deep breath, okay? Not because you “need” it, but because it feels freaking wonderful to expand those lungs and breathe in deep, then exhale fully. (10 points if you take a deep breath while you pee barefoot. -10 points if you do that in a public restroom.)
Massage your hands. Before bed, when you need a minute to refocus, or just because you like soft hands. Grab your favorite oil or lotion, and be sure to gently pinch the soft spot between your thumb and pointer finger for extra relaxation.
Add fruit to your water. Your toddler didn’t finish his apple slices? Toss a few into your water bottle or pitcher. Slice up a lime or orange while you’re at it and toss those in, too. If you’re feeling super fancy and have it on hand, add a mint leaf or two. Stimulating your taste buds can help keep your mind clear and connected to your body.
Quote it. Find a short quote or poem. Read it. Twice. Return to it when you need to fuel your spirit.
Eat a spoonful of peanut butter. Or sunbutter. Or almond butter. Or Nutella. You probably need the protein or chocolate fix. Go ahead and do that now.

If all else fails, drink that extra cup of coffee, or turn up your favorite music and dance. Or hide. Yep, sometimes straight up hiding can be self-care.

Oh, and if anyone has any ideas about how we can abolish the term “self-care” and replace it with something more fantastically fun, go for it. Let me know. We will sprinkle that phrase like glitter from a unicorn.

Take good care,
Carrie

Feeding Echo and Finding Purpose – Our Life with FPIES

September 25, 2015 by Carrie 3 Comments

A few weeks ago, our local news station asked our family to do a news segment on FPIES. We talk about FPIES almost weekly here in an effort to raise awareness around food allergies, and I’m all about raising awareness wherever and whenever I can. So, of course we said yes.

{Watch our story here.}

Our awesome story teller, Kerry Tomlinson. — Our wonderful story teller, Kerry Tomlinson.

I love the story, I love how well they captured the sweetness of my boy, his gentle, joyful spirit, and most of all his interaction with his dad. The news got about 85% of the story right, and I’m grateful for that. But they missed a few details, and one major detail that I want to express:

Echo’s illness changed everything.

From the ashes of that first year, a new life was born. I don’t mean a human life, (although we were terrified of losing our baby for the first 18 months of his life). But this. This work, this site, this whole idea was formed from the grief.

Hospital — Echo, two days old and fighting for his life after a stroke.

In the summer of 2014, my long-time friend, Jessica, asked me to write our story for The Leaky Boob. I was in the middle of dealing with massive PTSD, chronic mastitis from exclusively pumping milk from boobs that just wanted to quit, a crumbling marriage, and figuring out a way to keep our son alive and thriving in the midst of an illness nobody, even specialists, know much about. He had three “safe” foods at the time: TED breastmilk (wherein I was limited to 12 foods at one point in time), coconut oil, and spinach. Nightmares of feeding tubes and bankruptcy and divorce tormented my sleep, while emotional paralysis, physical pain, and extreme anxiety plagued me during the day.

Echo's second FPIES vomit-to-shock reaction. — Echo’s second FPIES vomit-to-shock reaction when he was 8 months old.

I said yes to telling our story. Beyond the fear and the trauma, I knew other families were dealing with the same issues. They were dealing with the despair, discouragement, and constant barely-subdued terror that their child might not make it. And what if their kid does make it? What kind of life and wounds will this struggle indelibly imprint their little bodies and spirits with? I started three drafts, scrapped them all, and then Echo had a vomit reaction to green beans in the middle of it all. And that was it. The impetus I needed to get it all out in real time.

This season. Trying to keep it all together and almost losing our marriage in the process. — This season. Trying to keep it all together and almost losing each other in the process.

Our story isn’t just for FPIES families, though. It is for every family who has faced unimaginable obstacles and trauma. Maybe it looks like FPIES, maybe it looks like unknown illness, maybe it looks like a brain tumor or infant hearing loss. Maybe it looks like a massive struggle with self-care or divorce or being a terrible friend for a season.

EchoandLance — Echo eating for the first time at a chain restaurant.

Telling our story gave me access to the power I needed to find my way through, even though I never quite knew the next step until I took it. It gave me just enough Brave to inch ahead of my Scared, and continues to fuel the heart of this little corner of the Internet where I believe Everyone deserves a seat at this table.

Thank you for being a part of this community.

Thank you for continuing to give us, and other families, a voice.

Thank you for sharing posts that are relevant to you with people you love.

Thank you for enjoying the food and laughter and tears and gathering here to have a human experience. This doesn’t happen without you.

Thank you.

Love,
Carrie, Lance, and Echo

“Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. They come together and they fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.”

― Pema Chödrön

11 Ways To Keep Food Allergy Kids Safe

September 10, 2015 by Carrie Leave a Comment

It’s back to school time. I heard the internet’s collective cheer as parents and children started a new school year, and then the following week grumble as new clothes lost their shimmer and the reality of the next nine months starts to settle in like a fog.

With every new school year comes an increasing debate around food allergies. Peanuts, tree nuts, soy, dairy, wheat, avocado, strawberries, eggs, fish, chicken, you name it, someone is allergic to it. (Whatever we are doing as a society with and to our food, it’s beginning to emerge as allergies in our children. But that’s another post.)

My son, E, is one of those allergy kids. In fact, his allergies are so severe, I cannot send him to group childcare or preschool. I want him to have the socialization. I think it’s incredibly important. But his list of allergens is so extensive, group settings with other small children just isn’t safe.

But one day, my kid will have to go to school. He’s outgrowing many of his allergies, and by the time he’s ready for kindergarten, I’m hopeful that he will be completely okay. Chances are slim that wheat and eggs will ever be okay for him, though. And I think peanuts will always pose a problem while he’s young.

So, as the school year pushes into full swing, so does the conversation around eliminating certain foods from our schools. It’s a hot topic this year, and we are all divided. I’m always going to side with the most vulnerable among us, especially because this hits so close to home. This isn’t a debate about anything. This is about caring for children who could die from inhaling PEANUT DUST. Or vomits to shock from a crumb of wheat.

Wash hands after eating. My niece, who is allergic to peanuts, reacts to traces of peanut residue on the shopping cart. My son pukes when he gets a tiny crumb of wheat. Wash hands, okay?
Wipe mouths after eating. If you think your child might put their hands in their mouths after eating, go ahead and wipe their mouths. If you plan on kissing or hugging a kid with food allergies, take this to heart. Your love should not cause pain.
Create a safe zone. Remove shoes before entering a house where children have food allergies. If you have someone over who has food allergies, wipe surfaces down, and give a good sweep or vacuum.
Don’t mix food with toys. Don’t allow food to be in the same space as toys. Contact reactions are real, and they’re scary. Kids eat in a designated area, kids play in designated area and wash hands after eating, before playing.
Consider changing your routine. If you or your child eats peanut butter or wheat bread at home before school, consider eating first, then washing hands and face, brushing teeth, and then changing clothes to minimize contact.
Take allergies seriously. Yep, food allergies are a total pain in the peanuts. I get it. But you know what’s more painful? People (and specifically children who are too young to fully advocate for themselves) dying from a speck of peanut dust they inhaled that could have easily been prevented. Why did they die a needless death? Because you wrote the mom off as crazy. And speaking of crazy…
Acknowledge the crazy. Parents of children with food allergies are totally crazypants. I’m raising my hand here because it’s true. But imagine the entire world was full of poison that could kill your child at any given moment and the only thing standing between death (or a trip to the ER) and your kid is YOU. All the time. You would be crazy, too. Hug that frazzled mom next time you see her.
Skip food crafts. Macaroni art or jewelry making? Use toothpicks or beads. I’ll buy some for your classroom, and I’m sure every food allergy parent would gladly buy the supplies.
Talk to your kids about food allergies. Your children are soaking up every attitude you have, more than every word you say. The words are still important, though. Talk to them about the importance of keeping each other safe and discuss ways you can work together to keep their friends safe.
Volunteer to eliminate peanuts (or known allergens) from your child’s school lunch. Keeping our kids safe in community space relieves massive pressure for Crazypants Allergy Mom and Dad.
Become an advocate. Be a safe harbor for these kids. Advocate for their safety, just as you would if it was your child in danger. Learn how to use an Epi pen. Learn CPR and brush up on food handling safety. Be a vocal supporter in the PTA, support separate eating areas and safe classroom policies. Give Crazypants Mom and Dad a hug and a bottle of wine when you see them.

Every child deserves to feel and be safe in our schools. You can help make that happen. Now, go forth and switch your peanut butter sammies to sunbutter and try to keep your sanity this school year. And for the love of Zeus, STOP MINIMIZING ALLERGIES. It’s harmful and directly hurts the children in your community.

Your Crazypants Allergy Mama,
Carrie