Why I Dialed 911 (and Some Lessons Learned Thus Far)

You’ve heard of mother’s intuition.  Well, I had a feeling Colton would be allergic to eggs.  We don’t have a family history of food allergies, I haven’t been particularly cautious about introducing other foods to my kids, I had no real reason to think that July 5th would have gone the way it did.

But here’s the crazy thing… I prepared the eggs, I sat him in his high chair, I unlocked my phone, punched in 9-1-1, fed him his first bite and then hovered over the call button.  I watched him, holding my breath.  One bite, two bites, three bites… phew…  Okay, he’s fine. Weird, I guess I’m just paranoid… probably just read one too many mommy blogs… he’s fine… …but… wait a second…



How did you find out he was allergic to eggs?

  • I gave him five bites of scrambled eggs and within less than 10 minutes from his first bite, he had developed a mild rash around his mouth. A rash isn’t that big of a deal though, right?  Minutes after it first appeared, it changed, getting less red but developed little white, raised dots. Lesson learned: These are hives.



Hives are fairly common – how did you know to bring him to the hospital?

  • Truth is, I didn’t think too much of it and I didn’t call anyone for another 55 minutes. After the hives appeared, I put him in the bathtub (Lesson learned: ROOKIE MISTAKE – if you suspect an allergic reaction, AVOID hot baths or showers as they can worsen symptoms.) His behavior was normal but his eyes started to look bloodshot, the entire whites of his eyes turned bright pink. He seemed to be breathing at a normal rate. I got him out of the tub and put him down for his nap.
  • Once he was in his crib resting, I googled “egg allergy in babies” and read that one parent knew her daughter had a severe allergy when she got hives AND threw up after eating eggs for the first time. Within seconds of reading that, I heard Colton throw up in his crib.  He proceeded to throw up multiple times after I picked him up.  I called Tyler first and then the nurses line at his pediatrician.  (Lesson learned: if you or your child has symptoms from TWO different bodily systems [i.e.: rash on skin AND vomiting, swollen eyes/lips/tongue AND nausea] CALL 911 IMMEDIATELY.  This is an anaphylactic reaction and can be fatal if not treated quickly.)


What is anaphylaxis?

  • Anaphylaxis is a severe, potentially life-threatening allergic reaction. Lesson learned: it can occur within seconds or up to 2 hours after exposure to something you’re allergic to. For Colton, his breathing became compromised close to 65 minutes after his first bite of eggs.
  • Anaphylaxis causes your immune system to release a flood of chemicals that can cause you to go into shock — your blood pressure drops suddenly and your airways narrow, blocking breathing. Lesson learned: reactions are different each time. His next reaction may occur faster or slower and present with different symptoms.



Will he grow out of it?

  • His egg levels are high enough that it is VERY unlikely he will ever grow out of it. We can hope and will get him re-tested every year but he’ll likely have a long, healthy life… WITHOUT any eggs.


Can he have eggs baked into things?

  • His response to egg (both egg white and egg yolk) are so severe that he cannot have egg at all.  It’s too dangerous to test but he might even react to simply coming into contact with egg proteins (i.e.: table at a restaurant not wiped down properly after serving eggs, Colton touches table, puts fingers in mouth or rubs eyes or nose).  This requires us as his parents to be constantly vigilant.  Personally, I have not figured out the balancing act of living our new life out in the real world while also treating this allergy with the utmost consideration.  More on that to come, I’m sure…


Is he allergic to anything else?  How do you know what he can and can’t eat?

  • If you have one food allergy, you are more likely to have others. Lesson learned: When you do a blood test, they can’t just tell you what you are and are not allergic to.  You have to pick certain foods to test so we chose some common food allergens.  The good news is Colton is NOT allergic to peanuts, walnuts, almonds, soy, or dairy.  He did test positive for being allergic to cashews (likely anaphylactic), in addition to his off-the-charts level for eggs.  We are grateful to know this in advance of exposing him to cashews and will now work to avoid them.


What happens if he sneaks a bite of a cookie that has egg in it?

  • We have two sets of epi-pens (one in our diaper bag, one in our kitchen drawer) that we must have access to wherever we go. The tricky part about epi-pens is they cannot get too hot or cold (reminding me of the cold chain work I got to witness on the Vaccine Delivery team at the foundation!) Lesson learned: Epi-pens contain epinephrine which is basically a shot of adrenaline.  After we use the epi-pen, we would need to call 9-1-1 immediately and be taken by ambulance to the nearest hospital.


Is there anything you can do to make him less allergic?

  • We have chosen to begin a treatment plan called sublingual immunotherapy (aka SLIT which is the worst acronym ever). It’s basically giving him a SUPER diluted drop of egg white, egg yolk and cashew once a week to build up some protection should he accidentally be exposed to egg or cashew.  We’d still see a reaction but the hope is it would lessen the severity of the response, if even slightly and give us more time to get to a hospital.


We remain SO grateful that our boy is overall healthy and well and that we live just 10 minutes away from Seattle Children’s Hospital (6 minutes if you go 75mph down Sand Point).  My intuition told me to call 9-1-1 and next time, I won’t hesitate.  If I’m honest, I still have this visceral reaction when I spot someone eating eggs, when I walk past a cobb salad in a store or read the words “with aioli” on a menu.  I hate them and I hate what they did to my son.  I know that sounds pretty crazy but it might be coming from the same inner protective place that hovered over the call button after preemptively dialing 911. I’ve learned so much about food allergies, my son and myself in the last three weeks and know I’ve just scratched the surface (no allergen testing pun intended).


But I thought we were going to Italy?

Last Friday, Colton had an anaphylactic response to his first exposure to scrambled eggs.  No one has said the exact words, “Your son almost died” but when they review his ER chart from 7/5/2019 at 2:25pm, I hear them say, “His response was quite severe.  I’m very glad you got to the hospital when you did.”

When I thought about my life with Colton, a severe food allergy was not in the plan.  But this is now our daily reality.  And as I’m discovering, we are not alone.

Eventually, I want to share how it all happened so should you ever need to know, you’ll be more equipped to identify and react than I was. But as I start to recall all the details on paper, I freeze.  And so for now, I’ll share this poem that I can’t stop thinking about.

Welcome to Holland, by Emily Perl Kingsley

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Why I Cried Last Thursday

I haven’t shared much about this part of Colton’s story but the more I do, the more I’m discovering the vast net of support, shared exhaustion and encouragement.

I know I have it generally good.  I am healthy, employed, married (and actually like who I’m married to), and have two beautiful children.  We live in a home we love, have a wide net of friends, and vacations planned.  But that doesn’t mean my life feels easy right now.  Actually, this is probably one of the most difficult seasons I’ve ever experienced.

Colton has all kinds of issues with his mouth: three upper lip ties, a posterior tongue tie,  and a high, extra-sensitive palate which causes hyperactive gag reflex. All of this has resulted in lots of tension in his face (homeboy can suck in his bottom lip so hard you can’t even tell it’s still there).  He’ll be six months old tomorrow and we were just diagnosed a few weeks ago.  Over time, these issues have made eating increasingly more difficult.

addie and colton

We made jokes early on about his disinterest in pacifiers. He did not like the bottles we used effortlessly with Addie (or the 8 different kinds we tried after that). And then came the big, flashing sign — his early weight gain tapered off and by the time he was four months old, he had dropped to the 6th percentile.  Our pediatrician didn’t seem too concerned but my mommy radar was going bonkers.  On my drive home, I called Tyler and then immediately called a lactation consultant.  What is happening?  Why is he waking up so often to eat yet dropping off the charts?

I say this delicately because I know his health is generally outstanding and we are truly grateful for that. But this has been hard. Watching your kid nearly fall off a growth chart when your one job is to help him grow SUCKS.

Before we were properly diagnosed, I tried EVERYTHING to figure this little boy out.  (If you know me even remotely well, this will not surprise you.) I had Addie sleeping through the night at 8 weeks so this felt so confusing, unsettling and if I’m honest, I was pretty frustrated. I read all the blogs, all the books, prayed all the prayers. Maybe he’s too cold at night? Maybe he’s too hot? Let’s unswaddle one arm.  Let’s let him cry.  Maybe if I held him while standing rather than rocking, he’d settle.  What if our bedtime routine isn’t consistent enough? Maybe I should take more fenugreek? Should we move him back into our room? Did we travel too early and push him too hard? Maybe if I buy EVERY SINGLE PACIFIER that Target sells, I’ll find one he likes!

I would get so excited sometimes, thinking I was onto something with a little tweak to how we cared for him which just feels foolish now. I was so desperate. Waking up five times a night for six months was/is not fun but looking at his little limbs and the numbers on the scale is heartbreaking.

We now realize that he was taking less and less milk over time as a result of fatigue and the physical limitations of his mouth composition so in turn, I was producing less and less. And when we learned this, we could have chosen to switch to formula but this kid won’t take more than an ounce or so from a bottle.  So here we are.

After a four week wait, we reached the week of our appointment with a specialist.  This doctor was going to take two hours to fully diagnose the issues at hand and we’d walk out with a plan in place.  THANK GOD.  And then… he got sick.  And because of the number of infants in the clinic’s waiting room, we couldn’t keep our appointment.  Another three weeks until the next opening.

We finally saw the specialist last week and she took two and half hours studying Colton, talking us through her diagnosis and ultimately, we decided to move forward with the first of two recommended procedures.  While it was difficult to watch him be held down, poked and clipped, the moment I cried came when the procedure was over.  His cry… it sounded different.  Rounder, fuller.  My son’s cry had changed because he could actually lift his upper lips the way other babies can.  I lost it.  I think because it gave me hope that he wouldn’t be hungry all the time anymore.

No parent should have to watch their kid be hungry and not have a solution to remedy the problem.  Not Jenn in Seattle.  Not the single mom across the world.  Not the dad next door.  I have a renewed fire in me for feeding children everywhere.

His next procedure is in an hour and I am a mixing pot of feelings.  I’m terrified it won’t make any difference.  I am hopeful that it will.  I am disheartened that we didn’t catch this sooner (yet who can I find fault with?  Myself?  His pediatrician? The multiple wellness consults we got at the hospital when he was first born?  There’s no clear culprit in situations like this.)

I don’t need any pity — that’s not why I’m writing this.  I think I would like you to join me in keeping hope alive though.  Colton is hungry.  We are tired.  I need to be reminded that it’s all going to be okay and we are doing enough.

kissing colton