Two years ago we welcomed this little bundle of joy into the world:
The pregnancy was somewhat stressful after we were told Ella had an enlarged brain ventricle at 28 weeks, but repeated ultrasounds with my high risk doctors showed the ventricle remained enlarged. Several assessments right after she was born and then a follow up ultrasound when she was one month old showed no enlarged ventricle…all that worry for nothing!
Cadence had been a dream of a baby, generally content in whatever situation…Ella though, she needed to be held and comforted a lot and she rarely slept at night. I do believe that Brandon and I felt very confident in our parenting skills until Ella came along and challenged all the “things we did right” with Cadence!
Just before she was 6 months old we decided to give Ella some rice cereal. We had no idea what we were getting into.
A couple of weeks after this picture I left Ella for the first time all alone with Brandon while I went to play cards with the Canasta Club! I nursed Ella and gave her some cereal to try and hold her over until I got home. A couple of hours later Brandon called and told me she was throwing up profusely and he hated to ask me to do it, but he thought I should come home.
When I got here Ella couldn’t hold her head up, she wouldn’t take her paci, she was cold and clammy and an ashen, gray color. She would only “wake up” to dry heave. I try not to run my kids to the doctor for every little snotty nose, but Ella’s behavior really had us worried, and we decided we needed to take her to the ER. It was close to 11pm, so we called my parents to come sit with Cadence while we drove over there. Just after they arrived, Ella appeared to just “snap out of it.” She acted like nothing was wrong. We had all been praying for her, and we just chalked it up to a scary little virus.
After a similar scenario a week later, I started to suspect rice cereal was the culprit. We stopped feeding her rice cereal and instead offered her a small of variety of fruits/veggies. We later learned that Ella was probably in shock during that first reaction.
Then she stopped gaining weight and started losing weight. She went from the 95% to the 3% for weight and to the 10% for height between 8 and 9 months. She was referred to an allergist and then UNC Children’s Hospital. As I was doing some reading, trying to find any information about “rice allergy” (which the allergist told us did not exist) or failure to thrive while breastfeeding, I ran across something called FPIES: Food Protein Induced Enterocolitis Syndrome.
The UNC doctor agreed that it sounded like Ella had multiple protein intolerances and that she was reacting through my breast milk. I came home after Ella’s first consult and called Duke allergy to see if anybody over there had every heard of specifically, FPIES because the UNC doctor said it wasn’t something their doctors were familiar with. A receptionist transferred me to a nurse’s line, and as I shared Ella’s story, the nurse said, I think I know what she has…do you know? We said FPIES together and it was such a relief and validation to know that I was not crazy and imagining this allergy!!
I won’t rewrite every detail of what we have gone through with Ella. It has not been an easy journey. As a mother, the natural instinct is to feed and nourish your child, and basically I couldn’t provide that for Ella except in the form of a bottle of special formula or within the constraint of a very rigid food trial (like this one for wheat at the hospital). For a time, we even had to stop feeding her the things that we originally believed to be safe (the fruits).
By her first birthday she could eat her fruit again:
In September we added wheat to her diet and around Christmas time we introduced pork.
Around March or April, she began eating dairy products and by June we felt like her diet was sufficient enough that we could stop giving her the formula. That was a
very whiny fun week at the beach. : )
Today is Ella’s birthday and I’m thankful that I feel well enough to celebrate with her. She is fun and spunky. She is my little daredevil and my little cuddlebug. She is a sweetheart and she is an instigator. She has an infectious smile and a twinkle in her eye. She loves to dance and sing. She loves her babydolls and her paci. She is one tough cookie and this morning she ate leftover pizza and birthday cake for breakfast and I am happy to report that rice/rice flour/rice syrup/etc are apparently her only remaining FPIES triggers!
And since we’re on picture overload anyway, here are some more…enjoy!
Happy Birthday, baby girl! We love you!