Oren’s Story

I had another unaided birth and greeted little Mr. O with open arms. I was the happiest girl in the world! My daughter was going to be ok, and my son was as cute as could be. Breastfeeding was easy and he took to it right away.  The little guy was a peaceful and calm baby. He was so laid back, I sometimes wondered if he’d ever open his eyes! We threw a birthday party for Pearl a week later and he slept through the whole thing.

Pearl, overall, was already showing great improvement. She was not quite emotionally well, however. The very recent traumatic events left her feeling vulnerable and afraid. Coming home to a new brother didn’t help.  Although I had a new baby, I wanted Pearl to know that everything was going to be alright and planned on giving her as much attention I could.  I could tell she really needed me. I was flooded by excitement at the idea of having a normal life after the struggle of my own sickness and then hers.

It was Dane’s first day back to work, and I was a little nervous about being on my own with two kids. Dane is always my rock. Pearl and I called across the house telling him we loved him as I was changing Oren’s diaper. I heard the lock turn on the door and as I looked down at the contents of Oren’s diaper, I froze. Green and bloody.  I sunk to the floor and all the hope I felt disappeared. I felt like life’s joke. Oren pooped 30 times that day. I was scared out of my mind.

Of course, I was in constant contact with our doctors who couldn’t believe all of our trouble and assured us Oren was simply too young for a c-diff infection. Young babies lack receptors for the infection.

So, that meant…he had something else I was familiar with.

Oren’s FPIES Diagnosis

I started another food diary, eliminating foods every few days because, aside from increased stools,  they were green and bloody.  My hands shook with each diaper change and there were many times I thought I was going to go completely insane.

Poop was still the center of my life.

I was doing some research and it seemed as if some babies won’t react to certain food proteins in breast milk that were not consumed by the mother during pregnancy. So, it was worth a shot and that’s how I got down to the Five Food Diet of Agony.

Every day for 6 long months I ate chicken, coconut, avocado, apples and tapioca. Nothing else. No cheat days. Nada. He even reacted to my vitamins! I’d try and sneak a blueberry and Oren would have bloody stools. Some days, I was so desperate, I’d chew a piece of bread and then spit it out. Other days, I’d be eating chicken and gag the whole time.

Thankfully, coconut makes sugar, flour, flakes, milk, oil and even nectar.

Oren wanted to nurse all the time. He was a big boy and I really struggled to keep up with my own weight.  Needless to say, I developed a lot of breastfeeding issues.

At least he was still a happy baby…

FPIES, apparently, isn’t genetic.  But, I’m not so sure about that. Oren was diagnosed with FPIES by our general pediatrician, who started calling us The Poop Family.

I simply wasn’t willing to go through food trials until he was at least 1, so I took on another long year of nursing all day and all night. I was eventually able to add back all the foods into my diet but, even at 14 months old, Oren simply would not eat. Anything. Or take a bottle, of course.  My breastfeeding issues consumed me and my family.

A picture hung over his changing table that read, “A smooth sea never made a skilled sailor.” It kept reminding me to hang in there.

I stuck to my rule of adding one single-ingredient food at a time and thankfully, at 16 months old, Oren decided that bananas were delicious. Then apples. Rice crackers. Beans. And beyond! He never had a reaction similar to Pearl’s. I’m unsure if it’s because I waited longer to try food and he had outgrown it, or he only reacted to proteins through breast milk. Either way, I’m thankful. Really, really thankful.

Happily, Oren is now 22 months old and is eating on his own. I no longer breastfeed, and am enjoying long, long nights of beloved rest. After I’ve had two helpings of ice cream, of course.

 

 

The End (Finally)

What a journey this has been! I sometimes wonder if my own c-diff infections could have changed my DNA which I passed to my children. I’m still confused about Pearl even getting c-diff  in the first place. FPIES in both children? How did that happen?

Regardless, after a long road, we are all healthy. Our key to survival through FPIES was research and support. Our key to survival through c-diff is the FMT.  I hope that if you or someone you love suffers from any of these ailments, that I’ve been of some encouragement. Thanks for reading, and hang in there.

Love,

The Poop Family