By Carrie Saum Dickson
This guest post shares the feeding journey of 16 month of Echo as told by his mother. A breastfeeding, pumping, allergy story of a little boy with a bright spirit and a mom and dad with steadfast hearts and commitment. Their story is beautiful, inspiring, challenging, humbling, educational, and so very raw. Be sure to go on to read part 1 and part 3 of their story as well.
We began introducing solids when Echo turned six months old. My career focuses on healing the body and restoring vitality through nutrition, and I was excited to begin this work with my son. I was ready to share the burden of feeding my baby with the rest of the food-eating world, namely organic fruits, veggies and properly-raised protein.
I was already planning a pump burial ceremony the day after Echo’s first birthday. My enlightened, supermom-self felt extreme gratitude to be able to exclusively give Echo breast milk for six months, and I could find the grace to pump six more. I know it is a precious gift so many moms are unable to give their babies and I felt genuinely humbled. But with my supply waning and the freezer stash quickly diminishing, I was ready to have help feeding my son. I was also ready for some sort of life again, a life that did not revolve around pumping and keeping up my supply. Plus, my nipples were starting to look kind of horrific, my areolas worn paper-thin in spite of my best efforts to keep them in good shape. My favorite mantra of “I can do this for ONE MORE DAY” felt as thin as my areolas. I was officially over it.
Echo’s first solid food was avocado and he LOVED it. He got it all over his face and hands and in his hair. Then we tried pastured egg yolk with grated grass-fed liver. I’ve never seen such a look of joy on his face. My baby was a total foodie at heart, just like his mommy. He wasn’t a huge fan of winter squash, but that was okay. He liked everything else we gave him.
We traveled to Texas for Christmas and Echo threw up a couple of times. It happened a little while after eating, which was weird, but we chalked it up to travel and maybe a stomach bug.
We came home, gave Echo avocado again, he threw up exactly two hours after eating it. Then he continued vomiting uncontrollably for the next 90 minutes and even threw up bile. We communicated with his doctor intermittently over the next 12 hours, assuming he was allergic to avocado. Echo bounced back in 48 hours, and a few days later we gave him his favorite, egg yolk. Exactly two hours after ingesting the egg yolk, the vomiting began again and this time it was much more severe. Echo became extremely lethargic. We communicated with his doctor continuously throughout the night. I gave him sips of watered-down breast milk and Lance and I took turns soothing and cuddling him.
We saw Echo’s doctor the next day and she brought up Food Protein Intolerance-Entercolits Syndrome, or FPIES for short. She tested Echo’s stool for blood, and it returned positive. We researched FPIES and his symptoms fit exactly, but nobody wanted to jump to a diagnosis. A few days later, Lance gave Echo a carrot to teethe on and precisely two hours after introducing the carrot, Echo threw up. That confirmed it. Our son was allergic to food. I wept unabashedly in front of his doctor on the day we received the FPIES diagnosis. Staring down the tunnel, that watery light of hope ending my relationship with the pump, began to flicker and fade as I realized there was no real end to pumping in sight. Not only that, but my baby was very sick and I could do very little to change that for him. I felt completely undone and powerless. The impossibility of pumping for the next 2.5 years loomed big and the dark clouds of survival rolled back to cover me once more. I would not break up with my pump any time soon. But more than that, my baby was sick. The kind of sick you can’t fix, or treat, or hope away.
We chose to stop all food trials, (with the exception of coconut oil, which has no protein in it), until Echo turned one. Resting his gut seemed like a wise move, and gave Lance and I time to come to terms with our amazing miracle boy who needs meticulous care and consideration. It also gave us time to come up with a strategy for feeding him, and space to deal with the long-term ramifications of FPIES. With each new food introduction, the rules for trialing it are stringent: one food at a time for 18 days in a row, followed by a three day break and reintroduction on the 21st day. No grains, no soy, no cow’s milk, no corn derivatives and no processed or combined foods. All of this in hopes of healing and reducing the strain on Echo’s gut. Eating out, eating in, traveling, playdates, childcare, the zoo, splash pads, children’s museums, playgrounds…they are all latent with food. Our home is safe from Echo’s trigger foods, but the rest of the world is not. Echo even reacts to grass and leaves that he sneaks in his mouth while we are outside playing, which turned us both into helicopter parents. Lance and I both mourned the loss of freedom we all would experience, but mostly the loss of freedom and exploration for Echo.
At eight months, my supply tapered way down, and no amount of herbs, tea, extra pumping sessions or positive thoughts brought it back. Under the supervision of my doctor, I tried Domperidone as a last resort. It worked for the most part, however, I still needed to supplement with donor milk. This was another hurdle. Echo mildly reacts to specific foods in my milk and I wanted to find a donor who would be willing to follow the same specific diet I do to give my son the best chance at healing his gut. One of my oldest friends, Allison, stepped forward and offered to be a consistent, diet-compliant donor and ship the milk overnight from Texas to Oregon every month.
Allison wasn’t the only person to step forward and help us. My three closest friends have also provided safe milk for Echo’s supplementation. With their help, Echo has remained in the 70th percentile for weight. Our vibrant, close-knit community have all helped us stay afloat. They’ve prayed, rallied, provided meals for Lance and I, given us date nights, an understanding and compassionate place to vent, and most importantly, a safe haven for our son. Company picnics and nanny-shares and beach weekends with our friends are possible because our remarkable little tribe cares enough to share the burden of Echo’s well-being.