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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

40 comments:

  1. Oh man, my friend.

    What the hell, right? I don't know why you're dealing with this and it totally angers me.

    Here I am throwing myself a pity party over here because B hasn't been wanting food and I'm afraid he'll lose weight and I don't want the doctor to scold me for having a small child again. And he's vomited this week from what we assume is spoiled milk.

    But this is just so much more intense and much more of a life struggle. I desperately hope there are foods that will agree with her body and that this path will be one she outgrows sooner than later. I'm so sorry for this struggle. There's nothing harder than watching your child struggle and not knowing what to do about it. I think we loss parents know firsthand the pain/grief/guilt we feel, even if we don't have the answers or means to make things right.

    Hoping and wishing.

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  2. I'm so sorry friend and so grateful you are able to breastfeed her. Hopefully that will help her outgrow it as she will be exposed to more safely through your milk than she otherwise would be.

    I just hate that it can't be smooth sailing. You've been through too much. We all have. C'mon life, throw us some freaking bones here!

    Hoping for the very best along with you for your baby girl.

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  3. Oh my goodness!! So sorry to hear this and hoping that she outgrows it! But even if so, what a tough road for the next few years! Sloane was allergic to cow's milk--would vomit profusely at the smallest amount--but has since outgrown that. It was never a dangerous thing for us so I cant even imagine. :/ Thinking of you and your family as you research and prepare.

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  4. Oh Renel. I wish that you and Harlow could have an easier path, it is very anxiety inducing and scary raising a medically complicated child when one of their siblings has died. I felt like I nowhere to hide with J, that I couldn't kid myself that everything was going to be fine because . . . well, it wasn't. My life wasn't a nice safe place where everything worked out just fine. And this all sounds so complicated and rare, it's so horribly unfair to be on the receiving end of such a long shot. Again.

    And Harlow is so super gorgeous, love me a bald, blue eyed baby! I hope that you find some foods that don't trigger her allergy and that this is something she will outgrow in time xo

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  5. Oh Renel, I've been thinking about you, and wondering about your quiet blog...and was hoping hoping hoping it was because life was light and lovely and you and your gorgeous family were welcoming a West Coast Sping season.

    I'm so sorry to hear this. You and Harlow don't deserve any of this. My god, enough is enough. Fears run rampant in my mind and heart of all the things this life will throw at my eventual (hopefully) living children...and gone are the days of calming myself down with the usually guaranteed fact that everything will be just fine, because Catherine said it, at one time, it just wasn't.

    I'm thinking of you. Harlow is beautiful. I'm hoping you are able to manage this horrible hurdle with breast feeding and her outgrowing this injustice.

    Sending my love xox

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  6. Oh, oh Harlow - you are one golden, luminous, gorgeous, precious rosebud of a baby girl. You are a beauty! (Like your mother!)

    Renel, my heart goes out to you - so much. I desperately hope that Harlow outgrows this. Our oldest son, autistic son, reacts to anything and everything. It has made food our enemy. All meals approach with heavy, bitter footsteps. We know we will pay; we just don't know exactly how, and definitely not why.

    (After twelve years of trying every diet, rotation diet, elimination diet, damn damn damn diet/supplement/vitamin/cure-all on the planet, I am so sick of researching that I would gladly throw in the towel. But I won't. He's my son. You understand all too well.)

    But I am snatching on to a little bit of hope, because a friend of mine who has a baby just a couple of months older than Harlow - her son was reacting to foods much in the same way you describe. At six/seven months, he had horrible reactions and threw up/choked constantly. However, his mother did what you have - returned to breast milk alone, for as long as she could. Now, at almost ten months, he is eating again and his body is much calmer. The violent reactions seem to have stopped, at least in 99% of mealtimes. He is doing so much better.

    Oh, I hope so much that the same will be true for Harlow. I hope and hope and hope and hope and hope for you. I just want her to be okay.

    I'm so sorry. If you needed one more proof of how bitterly, wretchedly unfair life is...

    And it isn't even sorry. Life never cares. Just goes on being unfair, and not caring.

    I would be so angry, if it did any good.

    xoxo CiM

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  7. Ugh, WHY? You have already been through so much. Sorry you are going through another life-changing ordeal with little Harlow. Hope you can find some foods she can eat and that she eventually outgrows it. In the meantime, WAY TO GO for providig her with the perfect breastmilk, that won't make her sick and that is making her grow strong and healthy. That is so awesome and will be a comfort for her even if she has a reaction or has to go through more medical tests. She is gorgeous and you are doing a great job!!

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  8. I'm so sorry for the stress and the scariness and the unknowns. And thankful for a beautiful little girl thriving on breast milk! Sending love and hope.

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  9. So so sorry. i can only imagine how terrifying this is for you and your family. i don't understand why those who are already suffering so much have to endure so much more. keeping your rainbow and you in my thoughts and prayers.

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  10. Oh god, Renel. What. The. EFFFFFF?!?!

    I am so sorry you're going through this, and that your family has to go down this path. But Harlow's lucky to have you for a mom--you're going to kick this in the ass, I know it.

    Keeping you all in my thoughts as you navigate this new terrain. Sending love and lots of hope. You're doing an amazing job with that gorgeous little girl.

    xo

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  11. Xo I am thinking of you and Harlow. I hope the doc will be able to help you out more. I understand the frustrattion although not as bad as that. Severus is only 13.8 pounds in the low percentile we have started him on solids to get his wheight up so far no problems except gas and constipation but I felt that sense of failure sadness and paranioa when we had his check up. The doc reassures us it just that we are tiny so he is too but I just keep worrying..... I hope you get some relief soon with the doc , maybe he will have a good treatment plan for reactions or know what foods will be safer. I am thinking of you all xoxo

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  12. Oh Renel- I'm so very sorry to hear this.....poor baby girl. I have no idea why things can't be easier. It's so unfair. I will be keeping you guys in my thoughts and prayers. Lots of love my friend.

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  13. From what I can see you must have some good Momma milk, she looks very healthy. I have heard of many Moms who just breast fed the first year with great results. That being said, my 2nd child had a horrible issue with food. Not what your sweet Harlow has but put us in a similar boat. Bananas were an easy choice because they caused no reactions. Sweet potatoes also worked well.

    I hope that you get some answers and things turn around soon. Love to you my friend.

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  14. Harlowe is such a beauty. I'm so sorry you have this to worry about, Renel. As usual, I'm wondering: where is our free pass?? Angrily wondering.

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  15. Oh god, sweetie, that sucks! Poor Harlow, poor you. I can feel the stress coming through the computer, and I'm sorry.

    I wish we could all get a free pass after what we've been through, but it's not to be.

    Harlow's such a smiley little cutie. Sending love to you all. xoxo

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  16. Oh Renel, this must be so overwhelming - the unknown dangers lurking everywhere. I'm so sorry.

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  17. Oh, honey. I'm so sorry for you, for little Harlow. The anxiety is overwhelming on the best of days, and then to have something to focus that worry. Just know you are not alone here, so many of us sending you love, surrounding you with grounding and an ear, if you need it, to listen, abide, cry with you. Surrounding Harlow with healing light and reiki energy, and you too. xo

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  18. I'm late to this post, but so very sorry to hear about the struggles with food. I find feeding the baby feels like such a heavy thing to me, and to hear that you and Harlow face this challenge... well, I understand the anger, the frustration, and the resurgence of grief. It's so damn unfair. I know very little about baby allergies, but I do know that kids can outgrow them. I know it has to feel overwhelming, but Harlow is lucky to have a mama who will truly rise to the occasion. I just wish it didn't have to be so hard for you.

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  19. That grief is tied in when anything goes wrong with our rainbows, I think. We just want everyone happy and healthy, and after all we've been through, shouldn't it just be easy from here on out? If only this world had any rhyme or reason to it! Glad I posted that quote on FB about not letting fear paralyze you...I hadn't read this yet when you commented, so I had no idea, but it was good timing. And it is true. xoxo

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  20. Oh sweetie I am so sorry. What an awful situation to be in. It is not fair.
    xo

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  21. Oh, God, Renel. It seems like life handed you a shit sandwich on this one. The anxiety is so intense sometimes, and when anything happens to our littles it just makes life so much harder. I have several friends whose babies have food allergies - one friend whose baby was so sensitive she had to watch what she ate so closely because her son would react to her breast milk. He's 4 now, and growing out of his sensitivities. But I'll tell you, Harlow could not look healthier or happier! She's growing so well on breast milk, and if she hasn't reacted to anything you're eating, I'd take that as a good sign that her system is really strong. <3

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  22. I'm so sorry to hear this. You certainly have been through enough. Your sweet girl has an awesome mommy who is going to take good care of her.

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  23. I read some IG comments from you and Molly that made me realize something big was up with you/Harlow, so I came looking on your blog this morning...goodness, I am so sorry for Harlow and for you and your family. It's just so freaking unfair. AHHHHH!!!!!

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  25. omg, Renel! Don't you love hearing its 1 in a million chances...not!!! I always feel like i'm that 1% chance!! HOw freaking scary! so sorry for little miss Harlow, she is serioulsy gorgeous! Her eyes, oh man they are sparkling! Love that rainbow baby of yours!

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  28. Hi Renel, I stumbled on your blog from my dear friend Caroline's blog (Happily Hidalgo)...I just thought I'd offer that you might research the Paleo diet a bit. It is engineered to keep problem foods out of the diet so your body can be at optimal health. Lots of folks with autoimmune problems, ulcerative colitis, various food allergies, and even MS have had great success with it. The Paleo Parents (authors of Eat Like a Dinosaur) would be a great starting point because they gear a lot of recipes toward kiddos. The Urban Poser blog also has great recipes. Those are good launching points, and if you're interested in that as your darling girl gets older, you'll be armed with lots of great recipes so you never feel like she's deprived from yummy food. Good luck! Blessings to you and your family (especially your angel, Camille). Take good care.

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  29. I don't know how I missed this post when you first posted it but it may have something to do with Nathan...Anyway, I've found it now and I will be looking for updates on your beautiful Harlow.

    I am so happy you breastfed her exclusively for so long and that you can keep breastfeeding her. Imagine the devastation formula would have done to her tiny, forming intestines. What a blessing that you breastfeed your sweetheart.

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  33. I'm not sure how I missed this post, I guess it didn't how up in my news feed. Anyways I knew you were on a strict diet to help H with your breast milk, but I had no idea it was so extreme. Overwhelmed um duh. Holy shit. When I really stop and think about how much research, work and struggle this would be oh man it's enough to make me cry! Aren't you sick and tired of winning the "shit" lottery. I mean seriously. Wtf?!? Poor Harlow and poor you. Hoping she outgrows this, but in the meantime lean on all your peeps for support. We are all here for you xxxooo

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  37. Just wondering how things are progressing with Harlow...

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  38. Just got on the blog world and have seen you have not been on in awhile!
    I sure hope everything is going alright with baby Harlow!
    Hope youf doing ok!
    Sending my love!

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  39. Oh shit. I haven't read any blogs in ages, and now I read this (several months late). I, too would love to read an update on Harlow. She is ridiculously beautiful, by the way. Hope to see an update soon.

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  40. Hey Renel, You've been on my mind as well as sweet Harlow (and, of course, Camille). I sent someone your way awhile ago whose daughter also has FPIES. Have you ever connected?

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