23 Weeks: Celebrations and Food drama

Last week at this time I was already writing this post in my imagination. It was full of great triumphs and victories. “We finally found our safe foods! I can’t remember a week with so few flare episodes since we left the hospital. Wow we’re so grateful. We’ve got this. :high five:”

But, friends, sadly, this is not that post.

These last few days have been pretty tough for her, but I’ll start with the better parts. Because there were plenty.

She’s got a personality

I was so worried she wouldn’t be knowable. But it’s becoming more and more clear that this little girl has personality in spades. Which just gives me so much joy. And relief.

Right now she loves:

• Being read to
• Looking at bright lights
• Dancing with us
• Playing with us
• Chewing (especially on her rocketship rattle and our knuckles)
• Doing sit-ups
• Being kissed
• Watching Dad do peek-a-boo
• Swinging in her swing while tracking the moving animals above her
• Showering with Mom
• Being in the hammock outside
• Having her hands held
• Studying our faces and eyes (although I’m not yet sure she’s making eye contact)
• Wiggling
• “Talking” to everyone
• Eating via spoon
• And, occasionally, she even likes participating in tummy time on our chests

And, gosh, when she’s not in pain, it’s such a delight to play with her.

Her voice is developing

For awhile, Brian has continued to say, “The 2q24.3 deletion kids are supposed to hit their early milestones, but a bit later. Yet we know speech isn’t something that’s really a ‘thing’ for her deletion group. But it’s so hard for me not to imagine that her wolf howling won’t morph into the babbling. And that all this might eventually turn into speech.”

I mean, maybe he’s right. Because this past week brought new sounds.

She still isn’t making the normal bababa dadada sounds — I have no idea if she ever will — but she is making different, monosyllabic and sometimes multi-syllabic purposeful sounds that have almost replaced her wolf howls. In fact, on the rare occasion anyone calls, I swear she tries to talk over me when we’re talking. It’s pretty cute.

If her sounds are progressing this fast in just a few weeks’ time, then that does give me a bit more hope that this kid might actually have a few words someday.

Reaching for toys?

She also shocked me this week when I realized she might actually be noticing and trying to grab a toy.

You see, friends, that’s a “leap 4” skill.

In theory, a few weeks ago leap 4 should have ended for her and she should have had all kinds of new skills. However, awhile back I gave up on leap skills not only because she never seems to act any differently during these leap periods, but because she will likely fall further and further behind in skills as time goes. Which makes it kinda depressing to follow.

But just this week I opened the app again out of curiosity. Right there on the page is a few skills I didn’t imagine her having for a long, long time:

You grab at things with both hands

You stick toys or objects in your mouth to feel and bite them

TheWonderWeeks App

Yet several times it seemed pretty clear that, indeed, she saw a toy. And then might have been trying to use her hands to move it.

That’s pretty huge, as many of her peers struggle with their hands for life because they’re often clenched and have various malformations. And she’s currently still in the same boat. Which makes doing things with them pretty tough.

But if she’s already trying then… maybe she might master a few skills with them?

Brian actually got to feed her!

Okay, maybe the feeding was only via spoon which is super messy and slow and inefficient. And maybe it was only twice and for short periods of time, but still. She let Brian feed her! (We did try various bottles again, too, and she still absolutely refuses. No idea why.)

I’m hoping, since Brian has 2 weeks off for vacation starting today, that maybe he can take a few feedings and I can then get a little prolonged “me time.” Something I’ve honestly felt a bit desperate for.

My hope we found “safe” foods? Nope.

Now for the food drama. (Y’all, this stuff is boring, so I would just skip to the end if I were you.)

The thing they say over and over again in the food intolerance world is if you have a bad reaction, go back to your “safe” foods and allow your body to rest before you try adding new foods again.

But the problem is we’ve never been able to confirm any food was “safe” for her, despite 3 months of our best attempts.

So when, last week, we thought we were finally seeing clear enough patterns in Eloise’s painful reflux flares that we could figure out which foods she was intolerant to pretty quickly (foods through my breastmilk, nothing fed directly to her yet). In addition, looking through the data, we felt we had a pretty good idea which foods might actually be “safe” because she didn’t seem to react to them.

I felt so optimistic that maybe I could finally, finally, feel sure that we had a few foods that I could eat without sending her little body into extreme pain.

Fast forward to now and that hope, sadly, flew out the window.

Not only does she now react to the 4 foods she hadn’t been reacting to before, but she’s reacting longer and more often. It’s soulcrushing to watch her.

Her reactions have gotten worse

“Screaming” isn’t a strong enough word for what happens as her tiny body writhes and fills with pain for 25-60+ minutes straight. She claws and arches and flings herself around as she sweats and screams and chokes with her eyes squeezed shut. If I didn’t know better and was a different human, I would have thought she was demon possessed.

This whole process can be so disheartening. In part because it takes at least 24 hours to see if any diet change adjustment we made helped at all.

The cycle is:

1. We see her react
2. We go back and study the food logs
3. We come up with a hypothesis of which food it was and why
4. We stop eating that food and adjust the food plan
5. We wait for 24 hours while she writhes in pain, just hoping that with every feeding we get further and further from her food trigger
6. At 24 hours out, she hasn’t stopped reacting, she’s now reacting more
7. And we start the cycle all over again

At first, we had hope that we knew the root cause and that meant that the next day would be better. But then each day got worse and our hope started fading.

It’s so sad.

Conversations in my head

As I’ve been holding her little body while she screams in pain this week, I have these conversations with myself over and over again.

• “Well, just eat foods you know won’t hurt her.” But that’s exactly what we’ve been trying to do. We haven’t found them yet. Don’t you think we would if we could?
• “Then pick like 2 super safe foods and just eat those.” Mal, remember, we’ve done that 3 times already and it got worse each time.
• “Well, then instead of a few foods, eat a lot, but a variety of foods.” We’ve done that, too, and it made it worse.
• “Well go back to eating the handful of foods where it was better.” That also didn’t work because she was still getting pain flares. Then as we cut out more and more foods, she would get worse and worse — and we could never know what was hurting her. Besides, some of those foods that weren’t hurting her before are hurting her now so it’s not that simple.
• “What if you just maybe fast a bit or eat a little less? Then your food would hurt her less.” To be honest, at times we’ve thought the same thing. But we’re already struggling to stop losing weight. And weight loss equals lower milk production. So it isn’t great for our health or for baby girl’s eating.
• “Just go get that prescription filled for omeprazole and be done with it. Pain isn’t worth it.” It might be a short-term bandaid for her pain, but we’re playing the long game. First, these medicines are only meant for super short-term use. Many deletion kids like her have reflux problems for life, so it would only be a temporary help. Besides, if the main root cause is food intolerances — which at least a big part of it is — then adding this medicine will make her food intolerances worse, not better. And if we want her to be okay long term, we need to figure out how to identify and control her food triggers. Pushing through and eating the offending foods makes it worse, not better, even if she’s on meds that stops her reflux.
• “Okay then just switch to a hypoallergenic formula.” While that might fix her food intolerances pain short term, once she starts solids soon, she’ll still have the same food intolerances problem we’ll need to solve — which, judging from the sample size of the 2 kids we know that eat orally that are like her, says she’s got a 50/50 shot of having at least some of these intolerances for life. Plus, breastmilk, even if it gives her some pain, is just so much better for her brain development and immune system at this age. And we know she’s gonna need all the help she can get.
• “Well then get yourself a feeding tube, girl. You don’t have to use it all the time, it can just be for overnight and still with your breastmilk.” While that sounds tempting in terms of helping her eat more, we’ve learned that feeding tubes often make reflux worse, not better. Besides, if we came to rely on it for most of her nutrition, that may delay or halt any speech she would have developed since eating orally and speech are often related.

Different foods. Again.

So we’ve switched diets yet again. This time to what seems to be the most bland diet on earth. (Hey there, brussel sprouts!)

It’s because our newest hypothesis is that maybe she has intolerances not only to a few single foods (like bananas) but also to naturally-occuring food chemicals like amines or oxylates.

If the latter is the case, that’s why she got worse when we reduced the number of foods I was eating because then those natural chemicals built up and overloaded her little sensitive system. Plus, we were cooking in a way that apparently increased some of those chemicals, which might also explain why foods she was okay with suddenly sent her into pain as we changed the way we cooked them.

The newest diet is from a food allergies clinic from an Australian hospital and focuses on foods that are low in 3 of the biggest offenders of naturally-occuring food chemicals. Which is why it’s so bland — food chemicals are where the flavor lives.

I’m not gonna lie, the menu does not inspire me. But if it helps, I’ll do it. We’ve got to give it a shot anyway.

Something we can at least celebrate is that we might have learned something through this pain.

Because if she started reacting badly to foods she hadn’t been reacting to before, then it looks like she does have a food chemical intolerance or two. And if that’s the case, then we have some hope we can get my diet right, yet. Even if it doesn’t taste great.

But she’s eating a lot less

One of the things that worries me the most is that her eating has been decreasing. At this point, according to calculations based on her size, she should be eating 700ml (23.7oz) a day.

• A month ago she averaged 640ml (21.6oz) a day
• 2 weeks ago she averaged 625ml (21.1oz) a day
• But this last week she averaged 598ml(20.2oz) a day
• And if the past few days are any indication, she’s heading for an average of 550ml (18.6oz) a day this upcoming week

This is a worrying trend.

Luckily, she’ll still let us feed her via spoon at the moment, but her “normal” syringe method is basically out of the question. Which means she loses even more of her food as it drips out of her mouth during spoon feeding.

I’m really hoping and praying that this drop in eating is temporary. I’m hoping we can get her pain under control again, and that will help her start eating well again.

Because we’re getting to a place again where doing physiotherapy exercises with her takes up the time she needs to be eating. Which also means going somewhere with her — a walk, a trip to the grocery store, a trip to town — all of it is out of the question because then she’ll have even less time to eat.

If you’re the praying or good vibes type, we could really use them.

Hugs n stuff,

Eloise, Brian, and I