Feeding Echo, part 1- Breastfeeding Trauma, Exclusively Pumping, and FPIES

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 2 and part 3 of their story as well.

skin to skin newborn

It’s 8:30 on a Wednesday night. My husband, Lance, is in our son Echo’s room, feeding him his bottle and reading a bedtime story. Bedtime is later than usual tonight. After working a full day building my practice as an Ayurvedic Wellness Counselor, taking Echo to an early evening doctor’s appointment and cooking dinner for the three of us, time slipped away from me. Echo ate his dinner late, too. We are all tired and cranky from a day that held too much activity and not enough down time.

I’m washing baby bottles in the kitchen when I hear Lance frantically yell through the monitor, “Carrie! Carrie! It’s happening again!”. I slip the bottle I’m washing back into the soapy water and hurry to Echo’s room. Echo, Lance, and everything within a three-foot radius is covered in vomit. I grab a towel for Lance, take our crying one-year old son, and try not to cry, too.

I draw a bath while Lance peels off his vomit-soaked clothes and climbs in the tub. I undress Echo and give him to Lance and go clean up Echo’s bedroom. I strip the double bed, break out the sanitizer and get down on my hands and knees to make sure I don’t miss anything. I study the vomit: color, consistency, quantity, and make notes to share with Echo’s doctor. The details are important.

I go back to the bathroom to get my sweet, smiley and spent little boy, put him in fresh pajamas while Lance showers. We start the bedtime routine all over again. We play peek-a-boo and pretend to eat his toes and we all feel a little better after laughing. I go back to the kitchen, finish washing Echo’s bottles, and sit down on the couch with my trusty pump as Lance kisses me goodnight and heads to bed himself. It’s 10:15. Exhausted, discouraged and hurting, I massage my right breast, which seems to constantly be clogged these days, and allow myself a good ugly cry. I leave the fresh-pumped milk out on the counter so I don’t have to waste precious minutes heating up a bottle in a couple of hours when I’m sure Echo will wake.

It’s 11:00 before I climb into bed, my right breast still hard and hurting with unexpressed milk. I know my sweet little Echo will wake up several times tonight, either from pain or hunger, and I’ll sing to him and soothe him the best I can in those long nighttime hours.

Echo has eaten green beans 10 days in a row now without any reaction, and we began to hope that maybe this would be a Pass. That his diet would expand to something other than breast milk, coconut oil and spinach.   This latest vomit episode signals the end of the green bean trial and one more food to add to the Fail column, of which there are many. And more than that, it means we have to start over from scratch with a new food, and all of the trepidation and hope that comes with it. I fall fitfully asleep worried about my baby, my boobs, and this betrayal of my son’s body called FPIES: The Mother of All Food Allergies.

Echo’s relationship with food has been fraught with difficulty from Day Two. When he was 36 hours old, he stopped breathing while nursing and continued to stop breathing every 10 minutes for the next 16 hours. In the hospital, he received his nutrition through an IV for almost three days. We didn’t know it at the time, but Echo was experiencing non-breathing seizures due to a stroke he suffered sometime shortly after birth. None of the doctors could tell us what caused it, and they chalked it up to happenstance.

Echo stroke NICU Exclusively pumping

My relationship with feeding my son has also been fraught with difficulty. Resuscitating him when he turned blue at my breast brought on PTSD and panic attacks for months. Over a year later, I still feel a faint, tiny, cold fist of fear in my chest when I remember it.

My first experience with a breast pump was sitting next to Echo’s bed in the Pediatric ER while a team of medical personnel worked furiously to keep him from crashing every 10 minutes while my eyes continuously leaked tears of terror and exhaustion. I pumped every 3 hours around the clock, even when I could not hold him for two days as my milk (miraculously) came in. I continued to pump, proud of my body for rallying to feed my baby, in spite of the circumstances and in spite of my fear. My body could do this one thing for my newborn son, and it did it well through bone-crushing exhaustion and fear.

Around four months old, Echo began making great strides in his stroke recovery. The muscle weakness on the left side of his body that affected his latch retreated. We weaned him off one of his anti-seizure meds. He woke up to the world around him, alert and happy and contagious with laughter. He also rejected the breast entirely. We had worked up to three nursing sessions a day and I was sad and frustrated when he wanted nothing to do with it. He looked terrified and scared every time I put him to breast. I told him aloud “we can do the hard things together, baby”, the phrase which I used to affirm us from pregnancy on, and resolved silently to myself as I hooked up my pump, “I can do this for ONE MORE DAY”. Grace always showed up to help me through those difficult early days of weaning and extra pumping.

 

exclusively pumping

I wondered if Echo remembered his first seizure and in my gut, I knew forcing the breast was re-traumatizing him. So, we stopped nursing. Many of the dark clouds our little family had been surviving under, lifted. We enjoyed lots of cuddles and closeness with bottle-feeding and we allowed this breast feeding-free world to be our new normal. I developed an even closer relationship with my pump. It went with me everywhere, even places my baby couldn’t. I tried hard not to resent the extra dishes, the double duty of pumping and bottle-feeding, my miniscule supply of free time, and the total loss of freedom to just take my baby and have a day away from home without first planning how much milk to bring and where I could pump in privacy.

Carrie and Echo skin to skin

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Comments

  1. Babies are given Hep B is hospital as newborns. This is probably the assault on your baby leading to seizures, breathing problems. These can be adverse affects from vaccines. Please be aware of this and investigate ingredients of vaccines. I wish you health and continued healing for your precious child.

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