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My second child and our first daughter, Camille, died and was born on June, 30 2011 when I was full term at 38 weeks pregnant. I gave birth to my rainbow baby, a second daughter, on August 31, 2012. This is me trying to figure out how to be a mother to my living son and daughter and function in society after our tragic loss.

Sunday, March 31, 2013

Things Were Going Well Until They Weren't

Something happened.
It isn't good.
In fact it's very bad.

The truth is that I usually cry about 5 out of 7 days a week because I miss Camille...but now I don't have time for my grief for Camille because I need to do research and find answers and find hope for Harlow.

She has been amazing, growing and learning. She is 7 months young today...my little chicklette is the bright sunny spot in my days. She screeches and sits up, she can finally roll over in both directions but just barely. She is the most calm, congenial, mellow little girl. She is so soft and bald and super squishy.

We started on food around 6 months. Rice cereal, banana, butternut squash avocado. A couple weekends ago I gave her some rice cereal mixed with breast milk, about 3 hours later she started vomiting profusly, she was pale, lethargic and than the next day she was her usual self. I thought my breast milk had gone bad even though it was only 4 days old. It didn't taste bad...but I figured it must be that. Than a week later I gave her some rice cereal again with freshly expressed breast milk, 3 hours later the same progession of events... I knew she was allergic to rice cereal...but what baby is allergic to rice cereal? I called in to the on call service for my pediatrician...I told the nurse everything I had researched...We got a diagnosis on the following Tuesday after a lot of research on my part...She has FPIES (Food Protein Induced Entercolitis Syndrome). It is a very serious food allergy. It is cell mediated which means she doesn't get a rash or anaphylaxis. Her intestines sees food proteins as foreign.

She is fine unless she eats a trigger food. The problem is there is no set pattern, every child is different and we won't know what food she is allergic to until we feed it to her. It's like rush and roulette with food. It may not be the first time I give her the food, it may be the 5th or the 14th.  She is already allergic to rice and so all grains should be avoided. If a baby is allergic to rice, they are most likely allergic to soy and milk and so those are to be avoided. We will have to trial food for up to 3 weeks to know if it is a safe food for her.  Our family has no allergies so I don't know where this came from. I was allergic to wheat when I was little and grew out of it. The good news?? she MIGHT grow out of it in 3-4 years. I have to hold on to that hope. I am scared about the potential ER visits because of one bite of food, or an accidental ingestion of a piece of cracker....

It is a rare disease, like 1 in 100,000 babies. I don't know how I keep drawing this shit luck number. I can not begin to tell you how scared I am, how overwhelmed I am. I have had a bit of a pity party but mostly I am just sad. Sad for her. I know this will drastically change our family...I am just not sure how yet. It is all so new. I know so little. I am waiting to hear back from our pediatrician about resources. I have joined forums and read information in scientific literature, I have signed up with international associations and read blogs. I am trying to educate myself. I have stopped giving her food. Strictly breast feeding and wondering when I should start on that first scary bite by bite process. Should I strictly breast feed until Harlow is 1 or should I start trialing food sooner. I know she won't pass all the trials and at some point she will need more food than my breastmilk can provide.

I have aniexty and stress, I am right back in the throws grief and why me, her, us. I feel almost paralyzed by my fear. What I need to do is find my hope again. I hope she will outgrow this, I hope her path will be easier than harder. I hope we find foods she is not allergic too. I love her with all of my heart. My rainbow baby. My love.

Here is some information about the disorder:
International Association for Food Protein Entercolitis
FPIES foundation
Expert Reviews Article