27 Weeks: What a weird time

This week has been an odd one. So many highs but also so many strange not-quite-lows. It was almost like a roller coaster of “OH MY GOSH THIS IS SO EXCITING!” to “Man this sucks — I hope this is just temporary.”

Great: Best week ever in terms of reflux flare episodes

(Note: “Reflux flare episode” is a term I came up with. To the casual observer, it’s a time period of around 30 minutes where she looks like she’s demon possessed. But it isn’t demon-possession, it seems to be reflux. She screams inconsolably at the top of her lungs for around 30 minutes, bringing up milk and spit in a way that just seems incredibly painful. Lately, also any tiny noise, or shift in our body weight, or touch then sets her off to screaming even worse. They are intense for us, and, I’m sure, incredibly painful for her.)

Monday she had 2 reflux flare episodes. We decided to change nothing from my diet or hers.

Tuesday, Wednesday, and Thursday she had no reflux flare episodes.

Friday we drove down to my company’s summer days and she did great in the car — Brian drove and I fed her. Until we got to the site, where there was lots of noise, kids running and yelling, and music playing. That set her off almost immediately of crying and screaming in pain on and off for over 2.5 hours. Brian said every time she calmed down, another person would slam a door in the hallway and it would set her off in pain again.

Saturday, Sunday — no reflux flares.

This morning she did have one, although it was pretty mild as far as her episodes go. And I’m not convinced it was related to food.

So that means if we are looking at reflux flare episodes alone, this was an INCREDIBLE week for her! And that might mean nothing was food-related, which on one hand is encouraging that we might be on the right track, but on the other hand is maddening because it makes you wonder how much of her pain is food related? (Clearly some of it as we see huge changes through me changing my diet, both positive and negative.)

Not so great: Her eating was… a bit worrying

Her eating throughout the week was… not great. Her average was less than the week before. And that week was less than the week before that, and that week was less than the week before that, etc. But yesterday it was abysmal — she didn’t even hit 500ml, and she should be eating 700ml+.

Again, if we look at the app called “Wonder Weeks” this should be the stormiest, fussiest time for her. I’m hoping that’s all that is. We’ll wait a few days and see.

But another thing we noticed is that her eating is especially poor when she’s with Brian.

That’s, honestly, more than a little worrying. Once he started staying home especially we were hoping:

1. She would eat just as well or better with Brian (back in her first months she did better eating with him than me).
2. That we could, somehow, magically coax her into taking actual bottles again.
3. Which would then put us in a position where we might be able to have other people babysit her.

Because, we’ll be honest, Brian and I would love a few hours with just the two of us. And getting her to a point where other people can handle her feedings is key. But if she won’t even really eat well with Brian, then we still have a long way to go.

It’s hard to know what to do. For my own sanity, I need time away from her. But if she won’t eat with anyone else, then I don’t know what to do. I’m hoping things will magically sort themselves out and she’ll get used to Brian. Hopefully. You can pray for that with us.

In the meantime, any of you reading, if you have tips you have on how to get a baby to take a bottle or even just eat from Dad (we do need to try that thing where we put my shirt on him or something) — we’d love to hear them.

Great: We made it through our first overnight away!

My company’s summer days happened on Friday and Saturday in south Estonia. It was so smart, they had everyone take a COVID test before they came to make sure we were all safe. (Plus, 98% of the activities were outdoors.)

But, really, it felt like a huge accomplishment that we made it through our first overnight away. Sure, we had to pack up half the house to make it. And pumping away from home and all the juggling of milk bottles and cleaning parts that come with it is not for the faint of heart. But, we did it! (I just wish I wasn’t so stressed by the mess that came with us when we got back home.)

Though it was tough, I’m so glad we did it. It shows me that we CAN get away. If we wanted to. As long as one person stays inside the hotel room with her the whole time. Which, well, maybe isn’t so much of a vacation for us but we will figure it out.

Not so great: Super fussy for no idea why

Although she was, overall, way more pain free, she was fussy. Like, really really darn fussy this week, even for her. Especially the last few days she’s satisfied with nothing. She doesn’t want to be read to. Doesn’t want to eat. Doesn’t want to swing. Doesn’t want to be put to bed (at first).

I’d say if she was a normal baby that maybe she was teething, but I don’t feel anything coming in and many of the kids like her don’t get their first teeth until after 1 year. So… maybe it’s that Wonder Weeks Leap 5?

Great: I think we got to add a few things this week

This week I fed her directly:

• Lamb bone broth (for gut healing — she’s meh on the taste)
• Aloe Ferox (for gut healing — she has no opinion on the taste)
• Grapefruit seed extract (to deal with her yeast/candida overgrowth — she doesn’t enjoy this taste)

And the cradle cap she’s had since birth has had significant improvement even in the last few days. So exciting since I was even giving her such a small does of the grapefruit seed extract.

Otherwise, since she’s been fussy, it’s hard to tell if things have affected her. But with the absence of reflux flare episodes, we’ll assume she was okay.

And for my own diet in addition to taking all of the above, I also added cashews. She hasn’t reacted yet (we are on day 2). So… fingers crossed. Eating nuts is big!

Not so great: She was pretty constipated

For a kid who was pooping after every feeding to a kid who hadn’t pooped in a week, that wasn’t normal. She pooped Friday from the week before, and then this past Friday. That’s a long time.

We’re guessing it was due to the solids, so we decided to dial it back a bit. Monday was the last day she had brussel sprouts, and Friday was the last day she had lamb bone broth. So I think for now I’ll probably still give her a tiny bit of lamb broth from time to time and we’ll work on adding a few foods for me and finding her some digestive enzymes. And then start again.

Great: Found specialists for feeding

Kaili-the-Estonian-angel-who-showed-up-out-of-nowhere did some investigating on our behalf and found out we need someone in Estonia that specializes in something called düsfaagia — swallow problems. Through her research and contacts she found, I discovered there are approximately 2 that do this for babies in the entire country. Unknowingly, we had already seen one. For whatever reason, since she hadn’t been helpful so far (maybe I didn’t explain our problems well?) we are going to try and go see the other one in south Estonia. At least I think that’s the one our family doctor got us booked for in a month.

Not so great: She screamed through every major event

This week we had:

• A family doctor’s appointment. (Gosh I love our family doctor. She’s so positive. And she’s going to try to reach out on our behalf to a bunch of physicians that have patients with Eloise’s same deletion that I found in an online database to help gather info.)
• A chiropractor appointment. (She’s also amazing. Incredibly empathetic.)
• A physiotherapist appointment. (We bonded over the fact that we both follow the same Kinactive Kids instagram account with a fun physiotherapist from Texas who has great tips for babies.)
• Brian’s second vaccine shot
• And of course the summer days offsite for my company.

Other than the vaccine shot, which she was in the car for, Eloise screamed through every one of those events. Not just screaming, but screaming like one of us was torturing her. (The chiropractor said, “Wow, so dramatic!”)

Man. Babies. She hasn’t always done this, so I’m still hoping this is temporary and not a sensory overload issue. Although she has screamed through most of the last 5 physiotherapy appointments she’s had. Sigh. I guess we just keep moving forward and see what comes.

Great: Revelation around food stuff

These past few weeks I started putting a few pieces together.

• The pamphlet about her 2q24.3 chromosome deletion mentions only one family with food allergies (granted they only studied 36 individuals, so, that’s not necessarily insignificant)
• I only know one kid from her chromosome deletion that has food intolerance issues — he’s older now and still has the food triggers
• In the Total Elimination Diet breastfeeding mom’s page that have infants with really severe food allergies or intolerances, most of the mums used to be vegan or vegetarian. Why is that the case? Because apparently their guts ended up missing a lot of really important gut bacteria that come from eating meat, and they passed that same gut-with-missing-needed-bacteria to their babies, who ended up suffering from severe food allergies and intolerances, partially as a result.
• Up to 1 in 4 babies have colic — which some doctors now think are undiagnosed milk or food intolerances/allergies.
• Up to 1 in 5 babies have reflux, which can be caused by food intolerances/allergies.
• 90% of babies born in the U.S. are missing a specific strain of gut bacteria that helps immensely to break down breast milk and food

So what was my revelation?

The reflux problem she has definitely comes from her chromosome deletion. Across the board, most of the kids seem to get a pretty bad case of it — whether they are fed orally or via tube with breastmilk or formula.

But the food allergies? That’s probably actually my own gut that I passed on to her, which just make her reflux worse. Because for the 5 years prior to having her, I ate mostly vegetarian. (I called myself a “fake vegetarian” because if all the menu items that were vegetarian looked gross, I’d eat meat.) Because the family I know with the food allergies, and the family in the pamphlet are the same one. And she was vegetarian, too.

In fact, a lot of babies that scream from colic might just have food intolerances that, luckily, they grow out of. I’m just one of the (un)lucky ones who had a community around me who mentioned food intolerances from the start and we were able to find some success controlling some of her pain by me changing my diet.

So, in some ways, that’s great news. Because it means she might actually grow out of these food intolerances like normal babies. Wow. That sounds incredible.

Of course, the maddening side of that means that some of her reflux or reflux pain episodes are not related to food at all — which we saw this week like when the noise set her off at my company’s offsite.

It’s at times like these that I start doubting everything, thinking maybe this is just all in my head. (Oh man I would love for it to all be in my head, because then I could have some tea with cream and sugar, or grab an ice cream, or eat some pasta, or eat out at a restaurant with friends.) But then I remember back to the times where I reduced my diet to a few foods, or increased it to quite a few foods, and the screams of agony and pain that came with it for Eloise. So while not all of her reflux is related to food, clearly food can make it better or worse, too.

Not so great: Probably means I have a lot of work to do

The weird thing is if you look up symptoms of an unbalanced gut, I don’t have any of them. I just don’t. And if you look up symptoms of a food allergy in babies, they mostly talk about eczema — which Eloise doesn’t have (she did have little spots of it before I started on the extreme diets, but they haven’t come back since then).

Thankfully, a new friend in Tallinn might be able to help me find someone to help me figure that out. But I hear that healing an adult gut is a loooooooong process.

But if I can figure out what the problem in my gut is, then it might mean I can heal it and, thus, heal hers. Now to figure out how to find out what my problem is.

Oh, and as an FYI, since a lot of folks ask me about it. She and I both have been on probiotics for awhile. If you’re into that stuff, we’re on

• Since February: Biolatte Original – L (strains L. casei, L. fermentum, Bifidobacterium Bb-12, S. thermophilus)
• Since July: Edubily Darmbakterien (strains L. plantarum, L. reuteri, S. boulardii, S. thermophiles, B. lactis, B. longum, & B. infantis)

Great: We found more books!

We visited some friends on our way back from our company’s summer days. And I noticed they had quite a few English children’s books on their shelves. The pointed out that in the town they lived in, a secondhand shop — for reasons unknown to anyone — kept getting children’s books straight from the UK.

I was in secondhand children’s book heaven — what luck to find them! I think I bought over 75 because most of them were 50 cents. It’s been such fun to read them. Especially when Eloise is refusing to eat.

Coming up

This is our first real week (we decided not to count last week since there were so many appointments) of our time with Brian home fulltime.

We had lots of plans, but with her eating worse and worse from Brian (I hear her yelling at him in the next room as I type this), who knows what this week will bring. I just hope our new dry erase board and markers show up soon. I can’t wait to make lists and cross stuff off. (The crossing off part is medicine to my soul.)

Let’s see what this week brings.

All our love.

Mallory, Brian, and little monkey Eloise