When Mama’s Away…

Zac has FPIES reactions, apparently.

Trying to catch tadpoles in the creek while staying with Grandma and PopPop this week!

Trying to catch tadpoles in the creek while staying with Grandma and PopPop this week!

This is the hard part of child care for an FPIES family; no matter how much the caregiver loves the child and believes that FPIES is real and serious, if they haven’t lived it every moment of the day they just don’t quite understand the nuances of FPIES living.

In my case, Darrel keeps the kiddos during the weekends and my mom and dad keep the kiddos when Darrel is at work. They live just far enough away – and in the opposite direction of Darrel’s work – that when they’re on “baby patrol” the kids just go stay at Grandma and PopPop’s house 24/7.

Since my parents just moved, their house is a mine field of stuff for the boys to get into. Not to mention, they are not practiced at “accidental ingestion avoidance”.

So on my first trip back to work, Zac was given unsafe milk that had been pumped before he was hospitalized and we started the TED. He reacted for a blessedly short amount of time to that and we were able to get clean poops and a lamb broth trial started a mere week later.

This second trip, that I just got home from on Sunday, was a little different. I was more relaxed because now the issue of which milk was safe had been settled. We had started a lamb broth trial on my days off, and he was being given as much lamb broth as he would like until Thursday.

As of Friday, my mom stopped giving him the broth, as part of the food trial. We planned for a 3 day break and then a reintroduction to see if he would handle it okay.

On Friday I was chatting with Mom to see how things were going and in the conversation she shared that Zac had started up with nasty diarrhea that morning. She had seen what looked like a corn kernel in his diaper, but didn’t do what *I* would have done and poked it with a finger until I knew for sure what it was. (Yes, I actually sometimes dig through the poop. Gross, I know.)

Really, though, can you blame her? Ew.

As an afterthought, she shared that the previous day he had also been playing with a board on their porch and, unbeknownst to her, the board was oozing sap. So his little fingers got stuck together with tree sap!

She decided the safest thing to remove it was olive oil, since I’m eating that already.

It’s perfectly logical, and actually not a bad idea – except for the fact that we’re trying to avoid giving him anything I’m actually eating right now because if he does react to it, I have to stop eating it and I can’t afford to lose anything from my diet at all yet. But Mom didn’t know that.

So I’m sitting in Newark, NJ, on the phone with Mom, and groaning at the fact that Zac is reacting to either Corn, Olive Oil, or Pine Sap – or a weird delayed reaction to Lamb Broth.

I’m not mad at my parents at all; this is just part of what FPIES Mama’s talk about when we say people don’t “get it”. Until you’ve lived it 24/7 for a period of time, you will naturally be incredulous at the thought that a single kernel of corn could cause such drastic reactions in a child.

In a similar fashion, I was informed over the phone that Zac had a diaper rash and was having a reaction…but when I got home and saw his butt I was shocked and horrified. It’s one of the top 3 worst diaper rashes he’s ever had; they told me about it, but without seeing it myself I couldn’t imagine how bad it was.

Same sort of thing, different set of circumstances.

So, not mad at my parents at all. Not mad at Darrel at all. Just frustrated that it seems like the learning curve for taking care of Zac involves accidental reactions that burn his butt.

(To be perfectly clear, here, my parents have been AMAZING about my kiddos and their issues from the get-go. They try really, really hard to keep it all straight…it’s just that it’s a lot to keep straight when you don’t make it your full time career as I have done for the past year! Even Darrel gets confused sometimes, because he has the audacity to, you know, work. <wink> So, my Mom and Dad? Are awesome and I don’t want anyone to think they’re anything BUT awesome. M’kay? Thanks!)

When I got home on Sunday and tested his first two diarrhea diapers, they were both bloody, but by Monday at bedtime he’d only had one nasty diaper the whole day and it wasn’t as bad.

Plus I decided that none of the stuff we were using on his butt was working, so I tried arrowroot starch. Baby powder is a no-no because of corn, so I thought some other kind of starch might help keep his heinie dry and maybe help, in light of the fact that nothing else was working.

And arrowroot starch worked! His butt looks SO much better now! It’s almost healed!

So if we can get another poopy diaper without blood, we can resume the lamb broth trial to see how he does. Understandably, we had to hold off on that on Monday, so I can’t wait to see if we’ll finally – FINALLY – have our first Safe Food!

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In other return to work news, when I got home I did a milk supply inventory. Counting the milk I brought home from the last work trip, I have 409.5 ounces of safe milk for Zac.

He’s been drinking about 50 ounces per day.

So I have just a tad over 8 days worth of food left for my son.

Did I mention I’m scheduled to work 6 days in July? Not counting the time I lose at home with the commute?

So, yeah, we’re going to be forced into a formula trial in August. There’s no way I’ll be able to pump enough milk for August in that amount of time. We may not even make it all the way to August with the milk I’ve got!

Now I’m trying to figure out if we can finish lamb and quinoa before we have to trial a formula. I don’t think we’ll have the time; I think we’ll be lucky to finish lamb before we have to trial formula.

Ugh.

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Last week we took Zac in for his 12 month well baby exam. He hasn’t grown in months. He is now in the 5th percentile on weight and the 25th percentile on height. As of 9 months old he was in the 25th percentile on weight and 75th percentile in height, and his actual height and weight have remained unchanged in that time.

So the doctor is concerned and wants him to get some blood work done to rule out other causes of stagnant growth. He’s NOT failure to thrive at this point, but he’s on the ragged edge of it.

I’m honestly not as stressed about that as I’d imagined I would be, if ever faced with this. The truth is, I’ve known he’s not growing for a couple months now; we weigh the kids weekly, so it’s not a surprise.

FPIES means I can’t give my son the food he needs. FPIES means that I’m stuck between a rock and a hard place. If I just feed him foods in the hopes that he’ll be fine with them and he is NOT okay with them, then he’ll have weight LOSS as a result.

We’re doing everything we can to progress to foods, but ear infections, corn kernels, board books, tree buds, and other myriad things keep interfering with our best laid plans.

He’s meeting developmental milestones; his brain is right on track. It’s just his poor little body that is shrinking before my eyes.

The good news is that he did NOT test anemic, which, for breast fed babies is a concern.

Guess all that red meat I’m eating is doing some good for him, after all!

Sigh…well, with hope we can begin lamb broth again tomorrow or the next day, and with prayers he’ll do just fine with it. Sucking down a few bottles of that per day ought to help, and if the broth is good we’re going to feed him lamb MEAT next.

That should REALLY help things!

And while we’re being pushed into a formula trial for August, I’m hoping I can adjust my schedule to work only the last half of the month. That way, we may be able to finish off quinoa before we have to mess with a formula trial.

Formula trials scare me.

With lamb and quinoa in his diet, I’m sure he’ll start gaining weight…and from there it’s – hopefully – all uphill.

Prayers, please? And lots of finger crossing? Thanks!

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3 Responses to When Mama’s Away…

  1. Ruth Pinnell says:

    Reading the comment about the horrible diaper rash – are you able to make your own diaper salve? I’m glad the arrowroot worked for him. My son used to get screaming bloody rashes and the only thing that would sooth and heal them was a salve I made of olive oil and beeswax, with chamomile, lavendar, and tea tree EOs (but we weren’t dealing with allergies!).

    I found this blog via a comment you left regarding a recipe on someone else’s blog, and YOU and your family are amazing and inspirational!

    • Carrie says:

      Wow, thanks, Ruth! I’m glad you’re here!

      Hmm…I haven’t tried to make my own diaper salve yet. I may have to contact you for the recipe in case we get another “untreatable” diaper rash in the future! FPIES kiddos tend to have really bad diaper rashes; there’s almost ALWAYS someone on the boards asking about diaper creams. I do seem to remember hearing some ladies say they’ve made their own, but until this last one we were always able to heal Zac’s with one of the many creams we have on hand. Again, might need that recipe…just in case!

  2. Ruth Pinnell says:

    Does your blog have a general email? I would be happy to send it!

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