This week we actually have a decent bit to celebrate without even trying to stretch to find the positive.
A little relief for me
Brian took a handful of “feeding cycles” this week to start testing the waters to see how Eloise would do. In general, they went great!
Brian is so incredible with Eloise. I watch in envy as he plays with her and cheerleads her eating and sweetly sings her to sleep. I do those same things, but not nearly as much as I want to. But, then again, maybe if I had more time off I would probably have more capacity to do more of them.
Regardless, I cannot tell you the hopefulness this already starts to bring me as it means I can start taking some much needed time for me. (Which is exactly what’s happening at this moment. Brian is watching Eloise while a freshly showered me sits in the hammock and writes amongst a cool breeze and ants occasionally biting my knees. And let me tell you, a break is a good idea because I was not so nice to Brian this morning.)
Self care realizations
This week helped me come to the conclusion that, at the moment, the biggest thing I can do to take care of myself is actually just write. (Well, write, and occasionally take a shower so I don’t stink so bad.)
This week I did a lot of prioritizing getting stuff crossed off my to-do list. There are a lot of pretty important things in there I wanted to get done during my short breaks — like make a much longer list of foods and what natural chemicals they contain so I can know whether I can eat them or not. Which, as a result, meant I spent far less of my freetime writing than I had in previous weeks. It turns out that less time writing meant I was more grumpy than usual and sometimes downright mean to Brian.
Not such a great look.
So, it looks like I’m going to need to figure out a rhythm where I make sure I write. Otherwise, heaven help Brian. Seriously.
She’s eating more than last week!
After an abysmal day of eating on Monday, things started to pick up. This kid started eating more on average than she did the previous week. Which makes me feel a lot better that most days she topped 600ml. That’s a lot closer to 700ml than 550.
However. Yesterday was pretty bad on the eating front, though. So it makes me a little worried we might be heading for trouble again. Sigh.
Interestingly, one of the contributors to her eating less is that she’s just sleeping in longer stretches at night. I still pump once or twice in the middle of the night and it used to be that she woke me up, but these days it’s now almost always me having to wake her up. And when I do that, she’s so sleepy she often eats only a tiny bit before falling back asleep. I’ve tried making sure she’s fully awake by getting her naked or changing her diaper but it doesn’t seem to make a difference. When she wants to sleep, she doesn’t want to eat. But those missing calories are rarely ones she makes up for in the rest of the day.
We’re going to give her a few more weeks and do a few experiments (like shortening her wake windows to get in more naps, and thus more feeding sessions) before we start adding in extra nutrients to her breastmilk for a few extra calories. But it might come to that.
Her giggles just get me every time
She’s starting to laugh a bit more. But sometimes at the strangest things.
Although she does almost consistently laugh when I do “Wheels on the Bus” with her. It’s pretty darn cute.
Her hands are her new favorite toy
I don’t know what happened this week but at every turn I find her chewing on her fingers. It’s pretty darn cute.
Cautiously optimistic on the food front
Monday, Wednesday, and Friday she had a single flare episode and each lasted less than 10 minutes. Yesterday she had a few tiny ones, which makes me a little worried. But, comparing to last week where they were 30-60 minutes each and multiple pain episodes every single day, that’s a huge improvement.
We’re cautiously optimistic that we might be on to something with this low naturally-occurring food chemicals diet. Though she’s still been pretty fussy at times and her poop is just as runny and mucusy as ever, the fact that she’s been eating more again, spitting up less, and just in less overall pain gives us some hope. We might be on to something here.
The reality is, though, that we’ve been here before. We’ve made a diet change that ends up dramatically reducing her pain almost immediately. Then, after a few weeks, she starts going downhill again. So I’m trying not to get too far ahead of myself in mentally planning things like dishes with multiple ingredients. (Right now I just eat boiled lamb with a boiled/steamed vegetable for every meal.)
Because, even this morning she woke up with a rash on her neck and a diaper that smelled like vinegar. Signs, yet again, of an intolerance. And she’s been refusing to eat already today. So do we try to reduce the number of foods again to find the culprit and cut it? Or do we forge on and just hope I’ll eat less of it as I eat more foods but risk us never knowing if she’s reacting to a new food or the mystery food? This is maddening.
I keep imagining that someday maybe, just maybe, we can manage her pain by managing my diet. Here’s hoping.
Which is why I’ll probably at least finish out this week on my super super simplified version of the diet (lamb, brussel sprouts, green beans, cabbage, swede, celery, peeled pears, and white potatoes) before I start addng some of the more “risky” foods like lentils, rice, chickpeas, oat milk, cashews, sugar, or decaf coffee. Or maybe we’ll experiment with swapping in and out these foods to try to find what’s bothering her first. Gosh I don’t know. Sigh.
Confession. I did have a single cup of decaf coffee with 1.5 teaspoons of sugar on Thursday. Both were on the allowed list for this diet and I had an awful headache. She was already fussy so I have no idea if it made things worse or not, though she did struggle to go down for her last nap and to sleep that night. So it could be that sugar and her don’t go well together.
We survived our first real outing this week
My workplace is having summer days in a few weeks. We’ve tentatively agreed to go, honestly probably in large part because I just want to feel like a semi-normal human being for a day. But that doesn’t mean it’s going to work well for Eloise.
The last 3 physiotherapy sessions we’ve gone to with her she’s begun screaming and sobbing almost instantly once we get there. I don’t know if it’s because the room doesn’t have air conditioning (it’s been pretty hot here in Estonia and most places don’t have any sort of cooling units) or if she just struggles in other environments outside the home or maybe she just doesn’t like the exercises there. Something. Regardless, though, it’s made me really wonder if we really can go to my work’s offsite or not.
So on Saturday we tried to do a test outing. Eloise had already had a few short meltdowns in the morning before we even left the house, so neither Brian nor I were feeling optimistic that time outside the house would go well. She’s never napped anywhere but me, Brian, her bed, or in her carseat.
But we took Eloise to a few stores as we tried to sort out passport photos for the three of us. Afterwards, some lovely folks here had invited us over to their place for an afternoon of grilling and chatting, so we went there next.
She surprised us.
Sure, she did melt down when we got to their house. But I got her to nap in their quiet, cool, dark basement. And from there she was mostly normal for the 1.5 hours we stayed after that. Just a little fussy. So… maybe it will be okay in a few weeks.
Regardless, it was a big step for Brian and I to get her out of the house and hang out somewhere else for a bit. And, yes, we did pack a ginormous bag of stuff to take with us just to make sure we had what we needed.
Today we make her official
Speaking of our passport photos errand. Brian and I are heading in to the American embassy today to register her with the US government. It’s the first step of many in also registering her as disabled in the States. It feels like a bit of an overwhelming process because America wants physical copies of everything because apparently they don’t live in the digital age yet. But let’s see.
Luckily, our own passports are expiring in early winter so we’ll get our passports renewed at the same time as we get one for her. But, man, taking photos of the little munchkin was by far the hardest. Who has requirements that a baby must be completely face forward, looking at the camera, and cannot be smiling? That was no easy feat, but I’m hoping they accept this one.
Hugs from the three of us,
Mallory, Munchkin Eloise, & Brian
Eloise The Tiny Fighter 