32 weeks: New (good) problems

Gosh this has been a great week. A really really great week.

She’s been way less fussy

Was it me not eating potatoes? Was it me not eating my favorite red lentil pasta? Was her better moods just a complete coincidence that I cut these two foods out? I have no idea.

Regardless, it’s been pretty great for her. Almost no pain, almost no reflux, and, increasingly, almost no spitting up.

On top of that, she’s had some good poos again. (Although not all.) Hooray!

Our appointments were incredible

Autism school

Monday we met with the head of an autism school. I had no idea what to expect. But, wow, she was just incredibly kind and empathetic and encouraging. She said that, depending on how Eloise progresses, Tallinn has special needs preschools (kindergarten is what they call it here) that focus on different areas — speech, physical disabilities, or even ones for kids on the autism spectrum. Brian and I laughed when we heard the categories and said she’ll need all of the focuses. But it’s a little early to decide yet. We’ll chat with her again in the spring.

Also, speaking of autism characteristics like being overwhelmed and crying at appointments — the room we met with her in was entirely dark, cool, and completely silent. But, still, Eloise was pretty upset for most of the appointment. (Thankfully, Brian’s beatboxing saved her from a total meltdown.) Yet the head of the school was unfazed. In fact, she even mentioned there’s a doctor at the children’s hospital who helped her son with sensory issues as an infant and who can make a world of difference if we do early intervention with Eloise. I’ve reached out to the doctor but haven’t heard back yet. But it sounds promising that we might be able to help Eloise early on.

Physiotheraphy home visit became virtual

Sadly, right before the private physiotherapist we’d heard so many great things about was able to come out to our house, she discovered she’d been in contact with someone with COVID.

So our in-house appointment became a facebook video call.

But, still, the video chat was useful. I’m guessing it was so great in large part because she prepared by reading the information I sent her on Eloise’s chromosome deletion and watching videos of her. That’s how she was ready with some specific exercises just for Eloise that she showed Brian and I.

She was so encouraging to both Eloise and Brian and I, too. I can’t wait until she can come in person.

Feeding team in Tartu

Brian had said just last week, “Eloise’s feeding is so much better now, I’m not sure we need to go to the appointment in Tartu.”

I said, “Sure, she eats faster sometimes now. But not all of the time. So it would just be good to go and see what happens.”

So we went and. Wow. Just wow.

Even though their English wasn’t all that great and, obviously, our Estonian wasn’t all that great, it was such an encouraging appointment. Two of the three team members were there.

They were deeply interested in Eloise’s history. They asked really really good diagnostic questions. They inquired about testing that she should have had already (but has not). They really wanted to see Eloise eating and to make a quick assessment how severe her issues were. They were curious in what position we fed her and what chair we use for giving her solids. They were excited to watch videos of some of her reflux episodes. And they were very firm that a feeding tube is something that, for them, is more like a last resort and not in Eloise’s cards right now at all.

When they said that about a feeding tube, I literally felt my body relax and tension drain away. These were people who were going to try to find the root issues and solve them, rather than just making issues “go away. “

Brian and I were blown away.

Not only were they encouraging and full of energy and a few ideas of what to do next — we’ll focus on introducing her solids as well as trying a fat supplement to add to breastmilk to get her weight up, which seems to have plateaued quite a bit — but they had great news for us. Eloise’s swallowing and feeding techniques they said were absolutely perfect and beautiful. And there were no outward signs of reflux, aspiration, swallowing disorders, or any esophogeal disease.

They were relieved. We were relieved.

Not only that, but they had a good theory on why it takes her so long to eat.

She definitely has low muscle tone (if she didn’t, she’d be sitting and/or crawling like her peers by now) and they said that also extends to her eating. The effort she exerts eating is likely a lot more than other babies, so she tires out quickly. Which is why so much of her eating has been eat a bunch at the beginning, then stop start stop start.

Which makes sense then why she’s been eating more and faster lately because we’ve made changes that helped. We’ve given her a faster flow bottle nipple and tried to gently expand the time in between her eating so she’d be a little hungrier and eat a bit more at once.

Gosh we left that place so happy.

We’ll go back in a few weeks for some diagnostic tests just to make sure, for example, that she hasn’t been silently aspirating.

Learning about the Estonian medical system

I spoke with Eloise’s high risk pediatrician the day after we came back from Tartu.

Though she did seem glad for us that Eloise’s feeding is better, she did make it quite clear that she and her people work as a team. And that, if I understood her correctly, it’s an all or nothing deal. If we are going to Tartu for an issue, then we would need to switch all of our high risk pediatric care to Tartu (2.5 hours away). Otherwise, if we want to continue to see her and her team of professionals in Tallinn, then we’d need to see only her Tallinn team. And stop seeing the Tartu professionals.

I was a bit stunned. We sought help from Tartu because the feeding specialist we’ve seen a few times here in Tallinn didn’t offer the help we needed at the time. Which is why I wanted to try Tartu.

Maybe it’s my naïveté, but I’d think even if you have a home “team,” you will sometimes need a little extra help from outside. Yet when she spoke it felt like a “You choose us. Or them.” I came away from the call feeling like a tiny child who just got caught with her hand in the cookie jar and was now in big trouble.

If we really do have to choose then Brian says the choice is a no brainer. We can easily make a trip to Tartu even once a week if we need to and get all of her appointments done in the same day so we choose Tartu. Which would then mean we’d need to somehow figure out how to build a team there.

I’m hoping I just heard the situation through an immature lense and this “them or us” isn’t at all what she meant.

I guess we’ll figure it out and I’ll try to sort through my own feelings on the topic. Regardless, we’ll do what’s best for Eloise. And if this one appointment is any judge of Tartu, then, well, I guess we’ll be doing a lot of driving over the next few years. And it will be well worth it.

I have my topics for therapy

Speaking of feeling like a child who got in trouble, I clearly still have some unresolved issues.

I finally got in to see a therapist a few weeks ago and it was clear afterwards that what would make our time most productive is to come up with a concrete objective. Like deciding on an issue that’s bothering me that I want to resolve.

Which is why I’ve spent the last few weeks trying to observe the areas where I need way healthier thinking.

One area that came up over and over again is self-care.

Right now, there’s some part of my brain that says if I take time for me — just doing something I want to do, like reading a fiction book or writing because I want to or just going on a walk by myself in nature — then not only is this desire selfish and bad, but it’s destructive to both Brian and Eloise and our lives together.

Clearly, that’s not true.

Logically, I know that if I don’t take care of myself, then there are some pretty awful consequences. I nitpick everything Brian does, treat him unkindly, and have very little capacity to deal with Eloise if she’s fussy. Which is why self-care is really a need, not a want.

Yet, still, if I read my book I feel these huge stabs of guilt. Taking that time means I’m not doing laundry. I’m not washing pump parts. I’m not organizing the mess that is our closet. I’m not gathering up stuff to sell or give away. I’m being selfish.

It’s a vicious circle. If I don’t take care of myself, I am a harm to others. But if I do take care of myself, I am a harm to myself with my negative self-talk and guilt.

This doesn’t seem healthy.

So I’m hoping I can work through some of this in therapy. Because, gosh, we’ll have a long, long road of caring for Eloise. I’ve got to get this figured out.

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We have a new problem — time with Eloise

This week she’s done loads better eating from Brian. His dancing and beatboxing and giggling have probably won her over, so she’s done pretty okay during feeds with him.

Not only that, but every day it seems she has more and more feedings where she eats quickly. And by quickly, I mean she eats around 100ml in 8-12 minutes. (Not all of them, but more than a few are now finished in under 30 minutes.) Just thinking about how 1.5 months ago it was taking me 1.5 hours to get her to eat that much is absolutely mindblowing.

But her eating so quickly for more and more (although not all) of her feeds means we have a new problem.

We have time with her where she isn’t eating. And we need to figure out what to do with it.

Brian dances and beatboxes with her. We both read to her. We might go on a walk outside just around our yard or to the mailbox. Or put her in her swing for a bit. She’s even tolerating the baby bjorn bouncer these days. Gosh, she’s eating so fast sometimes that we might have enough time for her food to settle so we could do more physiotherapy before she goes down for another nap.

I really am amazed.

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I’m developing empathy for Brian

Remember how I said sometimes I’m not so nice to Brian?

In University, one of the required courses for theatre performance majors was costume design. Why did we have to think about costumes if we were studying performance, not design? Because our professor said that years before he was so sick and tired of actors complaining about their costumes. He decided it would help them develop empathy for costume designers once they saw how hard it was to design a good costume. Indeed, most of us performance majors had rubbish art skills. So it worked — we were way kinder to our costumes and their designers.

Well, that’s kinda what’s been happening this week. For months now, Brian has said over and over, “It’s relentless. There’s always something. I just want a break. I just really really want a break.”

And, in general, once he says that I’ve just stared at him in utter shock. Like a horn was growing out of his forehead or something.

“Of course it would be nice to rest. But, really,” I thought, “you get to rest every evening after you put the dishes in the dishwasher and just wash bottles and pump parts. Whereas, I, on the other hand, never get to rest because I have to feed Eloise and pump around the clock all day every day. I haven’t had more than 5 hours of uninterrupted sleep since she was born. So excuse me if I ask you to stop complaining and suck it up.”

But because Eloise has been eating okay with Brian, I’ve gotten to take over some of what he was doing these past few days.

And, man, he was right. It’s a different type of exhaustion. One where you’re never done with a million tiny tasks that just keep piling up. It’s like a neverending game of whack-a-mole. You do one task and you have four more. Laundry. Kitchen mess. Dishwasher. Pump parts. Eating. Groceries. Errands. Bills. Trash. Organizing. Online ordering. Admin tasks. De cluttering.

It’s no wonder our counters have gone unwashed for months at a time. It was a single task Brian could safely de-prioritize. So he could just make some time for himself.

Hopefully I’ll now respond more nicely the next time he says he wishes he could just get a real break.

Solids have been re-started

Thanks to the Tartu feeding team, we have a semi plan for solids.

Step one is to choose only textures and consistencies for her that are nearly liquid.

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Step two is is to make sure she’s eating a little every day.

Step three is to start adding a tasteless fat additive to her breastmilk to see if she tolerates it.

The good news is we have our first store-bought baby food that she’s passed with no problem. Pureed pears. 🎉

As for the rest of what’s on the shelves as far as baby food goes, there isn’t a single other option we’ve found that is just made of the stuff on her diet. So we might have to go back to homemade and just really make sure the consistency is super runny.

The bad news is that it’s not looking so good for the tasteless fat additive. The can says one of the ingredients might be coconut oil, and she definitely has a problem with coconuts. So I’m wondering if that’s the problem. We’ve tried it for 3 days now and she definitely does not like it. That’s the one feeding she just starts refusing to eat halfway through. We even tried halving the amount we were supposed to add and she just won’t take it. But the moment we put regular milk back in her mouth she happily eats again. And, after starting it well, her 💩 also turned green and not so good. So. Well. There’s that, too.

Regardless, though, I’m feeling so much hope.

We’re feeling so much hope.

I don’t know if it’s just a coincidence that so much started getting better for Eloise after Brian started staying home, too. Or if that’s the main reason. Whatever it is, I’ll take it.

Oh. And Brian’s knees are much better. Thank you for your prayers and well wishes.

Mallory, Eloise, and Brian