33 Weeks: A real life telenovela

Gosh this has been a week of extremes for us. Some massive victories and some frustrating setbacks.

On the food front

The great

After last week’s post, a few people sent me to an Estonian website where you can order freshly prepared, puréed, and deep-frozen single ingredient organic baby food. It turns out that they have quite a few of the foods that are allowed on my diet, plus a few more that work for moderate diets. So we ordered some. It’s been great!

Not only has she passed pears, but she seems to be okay with beef. Now we’re on day 2 of potatoes. This morning was a little rough, so we will take a little pause on potatoes for a few days and see what happens when we try them again later.

The relieving

Brian and I made the decision to no longer log how much she’s eating at every feed, but instead do the math once a day at the very end. It’s a little scary because we don’t know how much she’s eaten at that moment, so we can’t set a mental goal of making sure she has “just a little more until she eats _____.”

Yet, as silly as it sounds, removing one mental task we’ve been doing so much of throughout the day has just brought a lot of relief. It’s a small thing we aren’t constantly calculating and thinking about.

The worrying

But. Speaking of how much she’s eating. She’s not eating so great at the moment.

I have no idea if it’s because her sleep is changing or because she’s consistently eating solids (around 15-25g per day total with two solids feedings) but, regardless, she’s eating more like 625ml each day rather than 700 per day. But considering for her size she should be eating 780ml and, well, yeah.

And we can’t just say, “As long as her weight gain is good who cares!” because, well, her weight gain is super slow.

Then again, almost every kid that has her deletion also struggles their entire life with small size and low weight gain so… do we even really worry about it?

Sigh.

Heck if I know.

On the sleep front

The background

By now, Eloise should be napping twice a day for 1.5-2+ hours each time. Instead, it’s 23-33 minute naps 3 times a day — but those short naps aren’t nearly enough to get her body actually rested. And, unfortunately, those short naps have some consequences that are pretty relevant. If her body doesn’t get enough sleep, then she doesn’t have enough energy to eat well.

And we know she doesn’t eat enough.

As far as night sleeping goes, once she goes down for bed, she wakes up a decent bit at the beginning of her bedtime. Normally after she falls asleep, she’ll wake up two or three more times in 33 minute intervals before sleeping for 4-6 hours straight. Then wakes up 1-3 more times after 3 or 4 in the morning. I haven’t really minded her waking up so much because she gets a decent bit of her calories during that time.

Really, getting her longer naps has been my focus.

That’s why I chatted with a pair of very kind sleep consultants this week who were not only amazing enough to read through all the information I sent them on Eloise’s chromosome deletions, but to agree to come up with a plan to help lengthen her naps without letting her cry.

After talking with them, Brian and I made a few small adjustments to her sleep environment and routine.

The 3 main new things are:

1. Not feed her to sleep (now that she usually eats faster we were able to mostly stop that habit a few weeks ago)

2. Get her to fall asleep without us touching her

3. When she wakes up from a nap, let her stay there for 20-30 minutes without going to her to see if she’ll go right back to sleep (but if she cries, we do pick her up)

The hope is when she finishes a sleep cycle she will wake up in the same environment she fell asleep in and, hopefully, just go straight into another sleep cycle to make for longer naps.

Boom. Now we just have to be consistent and then hope and pray that within 3-4 weeks, things get better.

The miraculous

The day we started letting her fall asleep without us holding her hands or touching her or feeding her, her nighttime sleep got waaaaay better. These last days when we put her down for sleep at night she just… sleeps. No wake ups at 33 minute intervals after she goes down for the night. It’s incredible. All it took was us not touching her as she fell asleep.

The confusing

But now her daytime sleep? Everything is out of whack.

Maybe because she has been sleeping better at night, suddenly this munchkin has been protesting loudly most days when we try to put her down for a nap. Which means instead of three 33 minute naps at 2-2.5 hour intervals, she had several days of two 25 minute naps at 4.5 hour intervals.

What the heck is going on?

Apparently this can be normal. Better night sleep with worse day sleep. And then switch at some point to better day sleep and worse night sleep. And then eventually it will even out and they will both be better.

So we’ll keep rolling with it and see what happens. The hardest part is when she wakes up from a nap. She’s always so happy — she immediately begins cooing joyfully at the top of her lungs. Which activates our instinct to go and give her kisses and hugs. But we need to try to leave her alone as long as she’ll tolerate it, for 20-30 minutes in hopes she’ll fall back asleep.

Man it’s hard to exhibit self control. We just love hugging her.

Our own lives

The background

Especially since Eloise’s diagnosis, Brian and I have both felt an urgent imperative to simplify and declutter our life.

Those of you who have done Marie Kondo know how much mental weight too much “stuff” can be in your life. And, well, we are still American by nature so we have way too many things. (Me, especially.) Estonians are often way better at holding on to way less household items, so thankfully I have a bunch of friends around me who live in ways that inspire me to hold on to less.

But if we’re going to be fulltime caregivers for a kid with complex needs for our entire lives, then we have no choice — we have got to simplify. It’s mentally taxing to take care of her, so we need to remove as much mental weight as much as possible to give us as much capacity as we can.

Which means organizing and getting rid of a ton of stuff.

The reality

Each week we’ve been making a tiny bit of progress on this goal. Brian and I have been going through stacks of junk that have been gathering dust for months. Then we buy a new piece of furniture that will help us contain our items we’ve just sorted through. Put it away. And then move on to the next pile.

But it’s been painfully slow.

Why?

The enemy

There’s a single task that has been a huge roadblock to us accomplishing much of anything.

Eloise feeds 8-10 times a day. That’s around 30 parts.

I pump 6 times a day. That’s 72 parts.

Eloise has solids/probiotics 3 times a day. That’s 10 parts.

That totals 112 parts we need to stop and wash by hand around 3-4 times a day. And each washing session takes anywhere from 20-45 minutes.

So when one of us is “off-duty” from Eloise, we’re constantly washing bottle and pump parts with almost no time left to get anything done. It’s weird and frustrating and exhausting to never feel “done.” And to barely be able to work on stuff we need to — like decluttering or research or learning Estonian.

The magic solution

Late last week I had an epiphany.

Eloise is older, so she’s not nearly at much at risk as she was in her earlier months. We even stopped constantly sterilizing her feeding stuff several weeks back.

We had tried washing parts by themselves in the dishwasher a few months ago but it was a disaster. They didn’t really get clean and the tiny parts all ended up sitting in the bottom of the dishwasher in water.

But.

Our dishwasher broke last month and we had to replace it with a fancy one (to fit our kitchen, the only one in stock in IKEA was the expensive one).

And this new dishwasher? Way better at cleaning. And it has a pull-out top shelf for silverware and tiny pieces.

Which is why we suddenly realized — if we rinse off our own dirty dishes well enough beforehand — then we could wash most of the bottle and pump parts in the dishwasher together with our dishes.

🤯

Mind blown.

It was such a simple solution to such a longstanding problem we could barely understand why we hadn’t thought of it before.

So Friday we started.

And I could just cry from gratitude. Three hours total of handwashing dishes turned into less than 15 minutes in the day.

I’m still in shock.

Hopefully this means we can get so much more done. Like the closet area that’s been a disaster for 2 weeks since we purchased an actual wardrobe. Maybe I can finally get enough time to clean that up!

How did we not think of this sooner?

Sigh.

Well at least one area of our life is only looking up. Praise the Lord. We need it.

In awe

Also. In case I haven’t mentioned it lately, Brian is amazing.

I went to our family doctor appointment earlier this week while Brian stayed home and attempted to get stuff done. (It didn’t work. He was just washing bottle stuff and pump parts the entire time.) As usual, once we got into the office Eloise started getting hysterical. I tried to calm her down my own way but it didn’t work. Then I tried to do beatboxing and, well, let’s just say I’m not nearly as good as Brian.

He is soooo good with her. So many times a day I look over at how kind and gentle and fun he is with her and I just feel grateful. I’m hoping that we’re giving her the best foundation we can for a life well lived.

At the very least, she’ll be well loved.

Hugs to all you wonderful humans,

Mallory, Brian, and little monkey Eloise