31 weeks: Where has baseline gone?

This week has been a mixture of delight and fussy baby. But we don’t mind.

A side note before we begin

I still cannot for the life of me imagine why anyone who doesn’t have a newly diagnosed baby with some sort of chromosome abnormality would want to read these insanely boring weekly updates about our lives. I feel almost guilty writing it all up, but it’s become a helpful exercise for me to reflect on what went well, and what we may need to focus on a bit more.

I would assume that, for most people, posts like having a parent superpower, or my dilemma with getting the vaccine, or the story of our rocky start together, of even about defining the word “normal” would all be far more interesting to you than these weekly summaries of mundane life details.

But, I guess, if you want to read this, then go ahead. Otherwise, hopefully the title lines will give you enough summary of what’s going on or show you which topics are more interesting than others.

For you praying folks

Most of you know that I got my first COVID vaccine shot a few weeks ago. After the first jab, Eloise’s likelihood of developing a fever — if she gets one — will be in the next few days. Then her risk decreases until about a week after my second dose.

My concern in the first place with getting the shot was if she gets a fever, there’s a possibility it could trigger epilepsy that she might not recover from.

The good news is I’m feeling more confident that she’ll be fine, but, even more importantly, I’m feeling some relief that she’ll be getting antibodies through my milk that will help protect her little delicate body in case we do come in contact with COVID.

But, as usual, any prayers or good thoughts are much appreciated. Just in case.

She’s still not back at food baseline

As soon as I think, “Ah ha! We’ve had 2 good days with no bad 💩s and not too fussy, so we must finally be back at baseline. Great, we can start trialing a new food tomorrow!” Then, inevitably, she’ll have a pretty bad day or a really bad 💩. And we’re back to waiting for a few good days in a row.

So, maddeningly, after her failing kefir at week 29, she still isn’t back at baseline. (Baseline is the place where her reflux symptoms are mostly gone — well, at least the big reflux pain flare episodes that last 30+ minutes — and her 💩s are the right everything.)

Which means, here we are on Monday, still not trialing anything new in my diet or hers.

Although, admittedly, we might have accidentally trialed a few new things — like the one time I used regular salt instead of Himalayan pink salt, the one time I used regular toothpaste instead of my normal baking soda, and the one morning when we used her old Vitamin D in the old olive/coconut oil because we ran out of her water-based Vitamin D from Finland. So it’s quite possible that these were what caused the reactions. Or at least I hope that’s all that it was. Otherwise it’s a little worrying.

Regardless, we pulled up the fancy spreadsheet that correlates her symptoms with my eating that my boss from work made for us a few months ago. And, when we looked at it, it seems there’s a tiny correlation between me eating potatoes and her spitting up. So I’m going to take potatoes out of my diet this week to see if it helps with anything.

Speaking of eating…

Her feedings just keep getting better and better

Yesterday I quickly read through Seattle Children’s Hospital guidelines on bottle feeding and had to laugh.

Right now, at 7 months she should be:

• Eating every 3-4 hours (she’s at 2.5 hour intervals during the day — any longer and she gets really upset)
• Eating 7-8 ounces (210-240 mL) per feeding (her normal is 100-110 per feeding, 130ml if we’re lucky)
• Feedings shouldn’t take more than 20 minutes (maybe once a day she’ll eat her normal amount in this time period, but most of the rest of the time it’s stop-start-stop-start over 45-60 minutes, which is still way better than 90 minutes!)

And though she’s nowhere near any of those goals, at least from our perspective, things are still improving every week. Especially remembering how desperate I felt just a few weeks ago with no hope in sight in the area of feeding, I cannot tell you what relief that gives me that things are still getting better.

So, to try to improve even more, this week I wanted to experiment with a few things:

• a faster flow bottle nipple (at 3 months, she was choking and coughing on the one we’ve been using so it never occured to me she could handle a faster flow one)
• warming up her milk every time — even during the night (a few times we’ve tried to experiment with warming up her milk versus giving it to her at room temperature, and she never seemed to care, so we’ve been doing room temperature for most of her life)

Both fronts helped! Especially in her night feedings, when she wakes up, she now eats a lot before going back to sleep.

Much to my happiness, she isn’t choking or seemingly spitting up more with the new bottle nipples. And the warm milk seems to also help her eat more at once. We’ve gotten to the point that if we let her bottle get too cold, she’ll refuse it. While it might be more work for us to heat stuff up, especially in the middle of the night, I don’t mind at all if this kid is eating well.

In fact, about eating. Her average was almost 700ml every day last week, which had me so friggin’ excited because that goal seemed unattainable just a few weeks ago. I’d been so afraid of her eventually dropping a nap (she still sleeps four times a day for 25-33 minutes each time), because that will also mean she will dropping a feeding. But we’ll be okay. She’ll be okay. I think she can make up the difference.

However, due to her increased eating, this Mama has some work to do.

For a week or more now, she generally starts out-pacing me at some point during the day. Meaning, she’ll have eaten more milk than I have produced up to that point. That’s not a huge deal — we just heat up milk from the fridge as long as we’re at home. But one day this past week she ate 20 ml (around 0.5 oz) less than I produced that day. And it’s gonna be tricky on the road if we start travelling to more appointments for her. There’s now no promise that I’ll be able to give her enough milk to satiate her appetite at that time of day.

So it’s back to more pumping for me. Not the best news in the world, but I’m still feeling thankfulf I’ve made it this far pumping. That’s a pretty big deal considering I was ready to give up in her first week.

Oh, and on the nursing front? She hasn’t really seem interested lately. So I’ve put that aside for now. I’ll probably offer again from time to time. Let’s see what happens.

Environmental triggers are definitely a thing

I turned on our portable speaker, chose the playlist of 5 Estonian kids songs a friend gathered for us, strapped Eloise into a carrier, and started doing laundry.

The first few minutes she was fine, until she wasn’t. She began screaming out of nowhere and couldn’t be calmed until the music was off, she was out of the carrier, and we were back in our familiar spot on the couch.

A few hours later I put on some tunes while the bathtub filled and the washer ran. Within moments of putting her on the floor to get her ready, she was screaming in pain and never really recovered. So much for her weekly bath I thought would be so calming.

This poor thing clearly can get triggered by too much or the wrong sort of something.

Which is why I’m a little worried about…

Lots of appointments this week

After a summer of so many of her doctors and therapists being on vacation, it’s been pretty quiet on the appointments front.

Not anymore, though. This week is going to be pretty crazy.

• Monday we have a consultation with a local autism school to see if they can give us some pointers already on how to help her
• Wednesday we drive across the country (it’s only 2.5 hours, but still!) to visit a feeding specialist team in Tartu to see if they can give us any insight
• Thursday I have a mindfulness zoom course for carers of special needs kiddos
• Friday we have an in-home physiotherapy appointment to see if Eloise does better at home in private care than she does in the state-funded appointments we’ve been going to where we have to bring her to a strange environment

Of course, the last appointments she’s been to have not gone so well as she’s reacted nearly immediately and screamed her head off. So I’m a bit concerned how she’ll react in the autism school and to the feeding team. Thanks to Piret, we have a pair of baby noise cancelling headphones that we will try from the start. But who knows how cooperative she’ll be.

Regardless, it’s weeks like these that I’m thankful my that all of my food for the week is prepped before it even starts. Otherwise I’m not sure how I’d survive.

Falling asleep is suddenly more of a struggle for her

Sleep problems seem pretty typical for kids with chromosome deletions or aberrations. And Eloise’s deletions (2q24.3, 2q31, and 2q32.1) are no exception.

This past week, suddenly her 33 minute naps were more like 15-20 minutes, and getting her to fall asleep in day and evenings both was taking way longer than usual.

The weird thing is we have the same routine every single time. For naps, we bring her into a dark room with only red lights. We sing a lullaby while we put her in her sleep sack and turn on a white noise machine. We either feed her a little bit more, or do a tiny bit of rocking/patting until she looks sleepy. Then we gently lay her in her bed and she normally falls asleep quite quickly.

But this week? She’d wake up immediately and start fussing. So we’d have to pick her up and repeat to get her drowsy again. Put her in her bed. Then she’d wake up again and get fussy so we’d have to pick her up. We might do that dance 2-5 times before giving up and letting her sleep on one of us. (When, of course, she falls asleep instantly.)

While I do love those baby snuggles, if I have to pump, it’s just not possible for me to stay there and hold her.

The good news is that the last few days, though, at least in the evenings, if one of us stays there and holds her tiny little hands, that seems to be working to help soothe her to sleep. So maybe we just have to change our tactics a little. (Plus, holding her hands is seriously one of the best feelings in the world.)

Regardless, there’s a sleep consultant in Estonia who will hopefully be helping us find some gentle methods to make her sleeping a little bit easier in the coming weeks. I’m hoping it helps. We’ve got a lot to learn.

She’s progressing

Although her sleep hasn’t been as good, one thing we noticed this week is that — seemingly in exchange for her sleep deprivation — she’s had a few developmental leaps!

1. This kid is now, finally, pushing up on her arms a bit during tummy time.
2. Multiple times when we’ve left her on the floor, as usual, for a bit of free play time after her nap, we’ve come back to find her on her belly. She hasn’t been doing that for awhile.
3. She seems to be beginning to bear some weight on her feet. Not much, but a little.

So maybe this sleep interruption is temporary cause this girl is just working her brain and real muscles too hard. I was starting to think she’d never progress beyond where she is. But maybe, just maybe, eventually this kid will crawl and walk if we’re lucky.

And, gosh, with Eloise generally feeling better and Brian being home, the best thing is I’m starting to feel more and more and more and more like my old self. I have room to breathe and think and enjoy more of life again. (I even started a few books and broke out a coloring book).

It’s been good. I am so grateful.

Hugs and love to you all,

Mallory, Eloise, and Brian