Playful Rooted

Oh my gosh this post has been a long time coming. Where do I even begin? It’s been a really long road.

But I’ll start here: overall, Pria is doing really, really well! She’s continuing to meet developmental milestones and is just a super happy, giggly, sociable little gal. I cannot believe she’s seven whole months old.

She is a total joy and the perfect addition to our little family. She’s been slower at gross motor milestones than her brothers but faster at things like laughing, recognizing faces, and saying consonant sounds. She’s starting to sit up more unassisted (she’ll sit for around 10 seconds) but she has NO interest in pushing up and crawling. She’s happy to roll across the room to get where she wants to go — less effort and just as effective!

She’s tiny and precious and starting to interact with the boys more and more, which is so sweet to witness.

That said…….this girl is hard work, and the past few months have been some of the most challenging so far. I guess I have to back up a bit to tell the whole story. And, spoiler alert: it revolves around poop. Buckle up!

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Since birth, Pria has pooped a lot. Like a lot, a lot. At first, we considered this a good thing because prior to her birth, everyone was concerned that her enlarged kidneys could also cause issues with her digestive tract. So because she was pooping so regularly, I was pretty happy. Her pediatrician thought it was fine, good even, and that her digestion would regulate at some point as she matured, so I wasn’t too concerned. For a while.

She continued to poop a million times a day for many months, and I just started to feel like something wasn’t right. I brought it up at every well check and even went to the pediatrician in between to see what they thought. Each time, I was told it was okay. It’s really hard to tell if an exclusively breastfed infant is having diarrhea since a liquid diet equals liquid poop, but she didn’t have any other concerning signs like fever or dehydration. And she was growing — slowly, but enough. I consistently left feeling kind of brushed off but also like it must not be that big a deal. Until, of course, it became a big deal.

Pria started having undeniable diarrhea, and although she still didn’t have a fever or any signs of dehydration, I just knew something wasn’t right. Because I had felt pretty ignored at the pediatrician, I decided to take her to the gastroenterologist at Children’s Mercy and was able to get in the next day. I was primarily just curious about food allergies or intolerances and wanted to see if she could be tested to see if there was something in my diet that was causing her issues. Unfortunately, the (terrible. Terrible!) GI doctor I was randomly assigned to let me know that they don’t do testing before 12 months of age. Instead, she wanted to rule out other things that could be contributing, like nutrient malabsorption, Hirschsprung’s disease, Crohn’s disease, Celiac disease, etc. I halfway agreed, thinking that we might as well get more information (especially given Pria’s complicated history), but I also suspected that she was going a little overboard. In my experience, when you go to a specialist looking for answers….what’s that expression? Using a bazooka when a flyswatter would do?

Anyway, I agreed to the non-invasive stuff, so that day, we did blood tests and an intestinal x-ray; everything looked fine. Then the GI doctor recommended an additional x-ray procedure. I reluctantly complied but said that’s the last thing we would do. During that x-ray, the radiologist pretty much ruled out Hirschprung’s disease since Pria’s colon looked normal, but then when the report went to the GI doctor (did I mention she was a terrible doctor?), she was unconvinced and wanted us to come back for another procedure where they would stick a balloon up Pria’s bum like a cocaine smuggler AND forcibly remove a strip of tissue from her colon while she was awake and strapped down to a table. !!

Did I mention that my daughter didn’t even have any symptoms of Hirschprung’s disease??

Yeah, hard pass.

The doctor kept calling me to schedule the procedure, and I kept refusing. But Pria kept having diarrhea. And, horribly, she started losing a lot of weight. She has always been a tiny little thing — even in the womb, she was only in the 14th percentile. So weight gain has been important since day one, and this new weight loss sent her straight down on the growth chart. You know what it’s called when a baby dips below the 3rd percentile? Failure to thrive. Could there be worse words for a concerned parent to hear? Your baby is literally FAILING to THRIVE. (And as a mom, you interpret this as: YOU are failing to help your baby thrive.) Knife to the heart.

This whole time, I had been slowly cutting things out of my diet, one by one, but nothing seemed to be helping. And, desperate as I was to find answers, having more invasive, painful testing done on our baby daughter felt intuitively wrong to both me and Ben. I felt in my heart that there was a more gentle solution and it was likely a dietary thing. I went back to the pediatrician and saw a new provider who suggested that maybe Pria was allergic to my milk (sob) and that I should try a hypoallergenic formula for two weeks, and if that didn’t improve anything, we should consider an endoscopy.

I hesitantly agreed, took the samples of formula, and went home. I was heartbroken over the prospect of not nursing my last baby, but of course, if this was what she needed, I would do it.

Except that Pria straight up refused to drink the formula. I mean, I can’t blame her; the hypoallergenic formula is literally just corn syrup and vegetable oil mixed together. There’s a big difference between that and breastmilk. Back to the drawing board, I did more and more and more research into what I could do to make my own milk as hypoallergenic as I could. If it truly was an allergy to my milk, we would figure out a way to feed her, but I asked (repeatedly) to try a super restrictive elimination diet first. I had been cutting things out one at a time and not seeing improvement, but I wanted a chance to try the opposite: cutting out a LOT of things and then adding them back in one at a time.

And that’s how I ended up eating almost nothing but potatoes, rice, zucchini, and pears for two weeks. I followed a slightly modified version of this total elimination diet, and let me tell you: it sucked not eating normal food! But it was also the easiest diet ever to stick to. If cheating will cause your innocent daughter to be in agony, that’s pretty good motivation to stay on track.

And the most wonderful news: it worked! Following this insane diet totally resolved her diarrhea. Not right away, but thank goodness I read this article in the meantime and learned that it can get worse for about a week (or more) before it gets better. That was definitely our experience, but I powered through, and after 2-3 weeks, it got so so so so much better. It was, and is, such a tremendous relief. She’s finally gaining weight (almost a pound in the last three weeks!), and she’s back above the old “failure to thrive” cutoff. Not to mention, she’s a much happier kiddo without the constant pooping, stomach cramps, and horrible acidic diaper rash. Thank goodness!

The more complicated part of this resolution is that by adding things back in, we’ve identified a lot of intolerances, so managing my diet is still really tricky. So far, we know she is completely allergic to cow’s milk protein and corn. (Corn?? I know.) She also seems to be intolerant of gluten, soy, and eggs. Beans are a no, but lentils seem to be okay. The jury’s still out on peanuts, but almonds and many other nuts have caused no negative reaction. I’ve been keeping a running list of “safe” vs. “unsafe” foods, and slooowly, the “safe” list is getting longer. My diet is still very restricted, and I do really miss a lot of my regular foods, but I feel nourished well enough. And I’m so grateful to be able to nurse my very last baby. The restriction is hard but 100% worth it.

Long story longer, it’s been a rough road to get here, but we are finally on the upswing (knock on all the wood). She’s gaining weight and we’re figuring this whole thing out one new food at a time — and we managed to avoid being bullied into procedures we didn’t want our girl to go through. Wins all around.

I shared some of these details with two of my good friends recently, and I found both of their responses so valuable. One of them said, “It’s incredibly unfair that you two have to continue struggling. When do you finally get to take it easy?!” Which – YES. That’s how I feel most of the time. It’s unfair and demoralizing, and I’d love to just enjoy my baby worry-free. But then my other friend said, “Who knew the biggest issues you’d be dealing with at this point would be food related?” And also, YES. This is nothing compared to what we thought we might be going through right now. Perspective. It’s a beautiful thing.

As is this sweet creature.

More to come.

xo!