29 Weeks: The miracle train keeps on chugging

This last week, Brian and I just kept locking eyes, laughing and saying, “She is doing SO great!” Gosh it’s been good for our souls.

• I haven’t been worrying if any of the food I’m eating is hurting her.
• I haven’t been worrying if she has a single bad feeding.
• I haven’t been worrying if she has one poor eating day.
• I haven’t been worrying if she is losing (or gaining enough) weight.
• I haven’t been worrying if she’ll have a severely limited diet for the rest of her life.
• I haven’t been worrying if we’re doomed to stay on our couch for the rest of our lives feeding her.
• I haven’t even been worrying if she will eventually be potty trained.

Why?

Because things are looking really really optimistic. So many reasons.

My diet

Y’all. Her last “reflux flare episode” as I call it (screaming from reflux pain due to food, usually for around 30 minutes) was on August 9.

August 9!

That was 2 weeks ago.

That means that between her not being in a large amount of pain and her poop still not having mucus in it any longer, that my diet is working.

Seriously. Oh-my-gosh let’s pause and celebrate that.

After removing stuff from my diet and trying different combinations since mid-February, we have finally stumbled across a set of foods and preparation methods that do not send her into pain.

(As a random side note, for any of you that were following back then, she’d generally start screaming in the early mornings and cry non-stop in inconsolable pain for 6-8 hours and we had no idea why. With me pumping every 2-2.5 hours back then, it definitely wasn’t a foremilk-hindmilk imbalance. So many people thought it might be colic, but Dr. Google said colic was normally in the evenings. Well, I think I figured it out. Back then, every single morning I ate a huge bowl of oatmeal made with coconut milk and bananas. We have now discovered that she reacts badly to each of those 3 foods. So, basically, I was eating an entire dish full of things that sent her into an incredible amount of pain. No wonder she screamed for 6 hours straight. Poor thing.)

So, to be in a place to feel confident that the food I’m eating isn’t sending her into an inferno of pain? It’s an amazing feeling.

I mean, y’all, that means I don’t even have to think twice as I go ahead and put a few more healthy portions of vegetable-based margarine on the bland food I’m heating up in the microwave.

Just. Wow.

Shoot, I even checked my vitamin levels for the foods I’m eating and it’s so balanced, even on the 12 food/drink items I’ve got, that I’m only partially deficient in 2 vitamins. (Slightly low on manganese, and only half my daily needs for calcium.)

Tomorrow I have my first normal doctor’s appointment since University, where I’ll get my blood drawn to confirm what I need extra supplements for. Things are lookin’ up.

On the feeding front

Earlier this week, after reading through several comments from folks here, I decided to try the regular Medela nipple on a bottle again. The first few feedings she did cough a bit and spit up more than usual. But. Then she got the hang of it!

I don’t know why it hadn’t occurred to me that she could improve. But, she did.

One feeding, she even ate 100ml (3.5oz) in 12 minutes without coaxing. Considering the past several months it’s been nearly impossible to get to 100ml in her in 90 minutes, 12 minutes seemed like a miracle.

Now, not every feeding went nearly that quickly or that smoothly — not by a long shot — but she’s been continually amazing us by how well she’s eating, even if she has a rough period during the day.

And remember that far off 700ml (24oz) goal? She went over it one day! I mean… just a few weeks ago she was averaging around 500ml (17oz) a day. I’ve nearly been in shock (the good kind).

We had been mentally preparing for her eating to get worse and worse and worse over the coming weeks and for us to seriously be considering a feeding tube if none of our strategies helped it improve. But, not only is her feeding not worse, but Brian and I have even been throwing around the idea that, after our feeding appointment in Tartu in a few weeks’ time, that we might just stop tracking how much she’s eating altogether.

I just. I can’t even imagine how good that will feel — just to trust that she’s eating enough.

(Oh! And her weight gain has been amazing, too. She’d actually stopped gaining weight a few weeks back, sometimes even losing it. But now she’s back to gaining all right. Hip hip hooray!)

Doing her “business” 💩

The first few times we put her on her potty chair when we went to change her diaper this week, she was not a happy camper. So we immediately took her off so we didn’t give her a bad association with the chair.

Yet. We kept trying.

Within a day or two, though, something clicked. Ever since then, she’s been content almost every time we’ve sat on her little potty chair. In fact, this week she’s pooped in her diaper only once. Every other time she’s done her business on her little potty chair.

Color me impressed.

Since we aren’t doing elimination communication per se, we aren’t looking for her 💩 cues to rush her to a potty or giving her signals that she needs to go — we’re just changing her diaper at the normal time and, instead of putting a fresh diaper on her immediately, we’re putting her on the potty chair and just waiting for a few minutes.

This gives me hope that maybe, just maybe, this kid will be potty trained some day.

She failed oatmeal beautifully

We gave her oatmeal last Monday. She sure liked it. Until 30 minutes later when she started crying. A lot.

Throughout the day she struggled to take naps and kept intermittently sobbing. Her poop afterwards also told us something wasn’t great.

But.

But.

BUT.

NO reflux flares. Not a single one.

Which means it was clear that we should not add oatmeal to her diet yet. However, it was also clear that she failed oatmeal — and, luckily, the pain lasted only for a day.

This gives me hope not only that it will be clear whether a food we give her will be pass or fail, but that also she can recover quite quickly.

I never thought we’d get here. I thought we would be living in some limbo food land where we had to guess whether she had slightly more fussiness than usual and whether it was food related or just her normal some-pain-some-flares.

We have so much hope now.

Choosing our solids carefully

We’ve been going extra slow on the solids front, choosing things that will help give us more information or help unlock us in some area.

Now that we know her fails can be clear fails, we thought we’d get a bit more bold with our choices to find out more information.

The most recent trial? Kefir.

For those that are into that sort of thing, here’s what we’ve given her so far and why:

1. Brussel sprouts: Pass! This was the first thing we tried, and it’s something I was already eating. She loved it. Although she was constipated for awhile after so we paused it.
2. Lamb bone broth: Pass! This is really really good to heal her gut and hopefully help reduce food allergies. She was more neutral on this flavor so, for the moment, I’m just having it every day.
3. Aloe ferox juice + grapefruit seed extract: Pass! This is also really good to help heal her gut and help reduce both food allergies and candida/yeast overgrowth. She really hated the flavor of grapfruit seed extract and, at the time, we were struggling to get enough milk in her let alone add another fluid on top. So we’ve actually stopped giving it to her directly and only I’m taking it — but we’ll probably start her back up on it soon.
4. Oatmeal: Fail. Too bad, too, because she loved it. This would have enabled us to add a lot more calories to her diet and have others babysit her so we could get some time off. (Plus, then I could have added oat milk to my coffee which sounded sooo nice.)
5. Kefir: Looks promising. Early on, several of those following Eloise’s story thought she had a Cow’s Milk Protein Allergy (CMPA). I wasn’t convinced at first, but cut out all cow’s milk products within a few weeks of her birth and saw some difference within a few days. But even after 8 weeks of no dairy and with me cutting out a bunch of other normal allergens, she still wasn’t doing markedly better. So we thought we would test a tiny bit of cow’s milk with her directly to see what happened. Kefir has some great gut-healing properties, so at least if she fails it, she’ll get some benefit from it anyway. We’ve only given her essentially a taste, but I assumed that should be enough for her to react if she does actually have a problem with it. (And we won’t continue with it after the trial.)

But, gosh, if she passes kefir, that means I can start trialing dairy in my own diet — because it’s allowed! I’m imagining real butter, cream in my coffee, and even cheese. Seriously, I’m salivating. Dairy would open up so much that it could mean that when I go out to a restaurant or need a quick snack from the grocery store, there might actually be items I could immediately eat. It sounds too good to be true, so I won’t get my hopes up just yet. But if we’re already on a hope train, I might as well add dairy to it.

If her poops and absence of food-induced cries are any indication, it means her little gut is finally healing.

Celebrate with me, y’all.

Her cries are becoming distinguishable

I remember reading in a book while I was pregnant that they did a study somewhere and found that new parents could distinguish between their newborn’s different cries by the time the baby was something like a few months old.

That, however, has not been us.

Up until the last few weeks, all of her cries seemed to be the same. At first I thought perhaps I was a failure of a mother because I couldn’t tell if she was tired, in pain, or just needed a diaper change.

But then these last few weeks happened, and it seems she suddenly has 2 or 3 slightly different cries instead of one. Brian and I are now looking at one another saying, “that sounds like she’s tired” or “I think this is just overstimulation” or “Uh oh, this is a reflux flare coming on.”

Either we’re getting smarter, or she’s changing as she’s in less overall pain.

We’re getting somewhere.

Finally getting in some real baby wearing

Now that she’s eating from a bottle rather than needing my finger and a syringe at a specific angle, I can baby wear her and just… do stuff. (Before, I could never feed her while babywearing.) Which means we can do stuff like take walks in nature, put laundry in our washer, pick berries out in the yard. All while, yes, still feeding her with one hand. And of course, the reality is that it only works if she isn’t crying or hating it at that moment, which she sometimes is.

But, still. That means sometimes I can DO stuff other than just sit on our couch and feed her.

It’s like my world expanded 10-fold this week.

First real week of Estonian study

Brian got in 2 actual nights of Estonian study last week. We’d put it on our whiteboard calendar to guard the time fiercely and — we did! I’m so impressed with us.

For my Estonian practice, I tried to speak with Eloise completely in Estonian for one full day. Mostly I kept forgetting and slipping back into English, but I did some. And I started reading “Sipsik” to her as part of that practice. Interestingly enough, it turns out I really enjoy the stories in there. So I’ve been reading a story or two to her from it every day since then, just because I want to find out what happens.

I got out

I got out. Of the house. (Not our marriage. Whew! Brian is still amazing.)

A dear friend of mine wanted to celebrate her own 10 years of living in Estonia. So she asked a number of her friends to join her at 7 a.m. to dance on top of an old Soviet building called “Linna Hall.” It’s a concrete monstrosity that was built for the sailing portion of the Olympics in the 80s. Currently, it’s basically abandoned, but thankfully still accessible.

So I drove in to town to dance while Brian watched Eloise.

Not only did it make me feel like a normal human to be able to leave the house and hang with friends, but Eloise actually ate well with Brian that morning.

In fact, several times this week she’s actually eaten well with him. (Although still, more often than not, she mostly refuses to eat with him but the moment I step in will do well again.)

But, still.

It’s baby steps.

Keep one thing in your thoughts and prayers

Brian had his second vaccine dose a few weeks ago.

But me? That’s been a harder decision.

We’ve talked over and over and over and over again about when I should get vaccinated and, because the risks for Eloise were pretty big, we’ve been waiting. Because we were essentially deciding between a small risk that the vaccine might trigger fever-induced epilepsy in Eloise in which she could end up with irreparable brain damage. Or that she’d contract COVID, which would undoubtedly send her into the hospital for some time. (I won’t go into the details of why those are our two possible worst-case outcomes nor what the likelihood is on here, but I’m happy to spell them out for anyone curious.)

We’ve been lucky not to contract it yet. And this summer COVID was almost non-existent in Estonia, just like last summer.

However, with the Delta variant becoming more common here and with even more severe health consequences and with kids like her often ending up in the hospital for minor infections, it was clearer we needed to very carefully weigh the information we had with the probable outcomes.

Because, I hate to even think about it, but now we might be choosing between possible brain damage if she gets a fever from me getting the vaccine or, now with the Delta variant, the same outcome or even death — kids like her are often very medically fragile. And we have no idea if Eloise is the same because infectious diseases are at an all-time low, so her little body hasn’t been tested yet.

I hate those choices.

So after some prayer and a bit more research, we finally decided I will get my first dose tomorrow. And I will continue giving Eloise breastmilk through it all, in hopes that I will transfer antibodies that may protect her if she does come in contact with COVID.

I know many of you reading this have very strong feelings on the vaccine, whether for or against. And we absolutely respect that.

I do ask that you don’t try to change our minds here one way or another.

Instead, what we would love from you is three things:

1. If you have specific, peer-reviewed (if possible) scientific study on breastfeeding and the vaccine, I’d love to see any and all info you have.
2. If you know of a baby that ended up with a fever after mum got the shot, if you can find out what day the fever came about (like day 3, day 1, day 17, etc.), that would be helpful to know. Because we are looking into proactively giving her fever-reducing medicine like paracetamol at some point but there’s just not a lot of info around on when the fever sets in.
3. Just pray for wisdom for us, and for Eloise’s protection. (Or send your good vibes).

Okay, that was way too heavy a note to end on. Let’s leave with something a little lighter.

Feeling almost “normal”

Between Eloise doing better and just being able to take care of her together, Brian and I have been feeling emotionally and mentally so much better. SO much better.

In fact, we’re almost starting to feel like normal humans with normal thoughts and normal emotions. Like before this adorable kiddo entered our lives 6.5 months ago. That feels really really really really good.

All our hugs and love from this hope-filled household this week,

Mallory, Eloise, and Brian