38 Weeks: Mushed Banana Giggles

Brian here.

I don’t often write blogs, partially because I’m so impressed with Mallory’s ability to communicate through them, and partially because I never really feel like what I have to say would be meaningful or useful to anyone.

But I thought hey, I could give Mallory a bit of break so she could spend her ‘free day’ doing something really restful (we pick a few days a week and allocate one of us as the primary carer for Eloise, so the other can get a dopamine hit by getting stuff done around the house).

First time here?

If you’re new to following Eloise, then a post like this will probably be a bit dry and confusing for you. For writing full of struggles, triumphs, and the raw feelings we’re working through as new parents to a special needs baby, you’re better off diving into all the non weekly update posts. Like Not your normal birth announcement, I want to choose her, A big change in our lives, Who defines ‘normal’ anyway?, Re-defining hope, A threat we never saw coming, Control is an illusion, I realized I have a superpower, No wonder…, Chapter 2: A non-fairytale start, or Jab 1 — A Mum’s dilemma among others.

Food testing is going really well!

If you’ve been following along, you’ll know that Eloise has been dealing with food intolerances for quite some time, and that’s had Mallory on a really limited diet because we choose to give her breastmilk. (We saw a study early on that said breastmilk helps develop brain matter way better than formula, so that’s what sold us on fighting for it since Eloise is going to need all the help she can get in that area.)

One of the first decisions I helped with after stepping away from work was which diet to try for Mallory. Using my patented “close your eyes and just pick one, because a ship in motion is more easily steered” method of decision making, we happened to get lucky and found one that worked. Basically, it was the first one on a list Mallory had put together.

But, by the time Mallory started this diet that worked, she’d already been through 4 months of various food trials, all of which eventually ended with an Eloise in pain (although less pain than she’d been in when Mallory ate everything at the start of Eloise’s life — back then our precious baby would scream for 6+ hours each day, unable to sleep).

Which is why when Mallory ended up on a diet that reduced Eloise’s pain to nothing, it was a really big deal.

The only problem with this diet was that Mallory was only eating like 6 foods of their long list. (Okay, 12. Mallory corrected me.) It was never meant to be permanent, though. So, at various times we’ve tried one food or another for Eloise or Mallory or both. Some have been fine. Some have not been fine. But it’s been slow going. Mallory’s been on it for almost 4 months, actually.

But, the great news it that now things are really looking up. As Mallory mentioned last week, she was trialing a whole group of foods at once — stuff that contained a natural food chemical called salicylates. And, after 9 days (2 days past when Eloise should have reacted), we can call that a pass! Caffeinated tea, coffee, spices, fruits — there’s all kinds of stuff Mallory can start eating again soon after we finish up all of the food challenges.

Since Eloise passed salicylates, we’ve moved on to testing the next food chemical called amines. To test that, Mallory is eating leftovers, browned meat, pork, dark chocolate, and bananas. (Mallory pointed out she suddenly got zits literally the day after she had to start eating chocolate so that’s a little funny.)

When we started we were a little concerned about the bananas because just a few months ago Eloise reacted very strongly and very badly to them when just Mallory ate them. I’d show you the videos of her pain as proof, but that would just break everyone’s hearts. Miraculously, though, we are on day 3 of the 7-day trial, but so far, so good. Eloise absolutely loves eating bananas directly, which we heat up and mush into tiny pieces and mix in to all her other food.

It’s looking entirely possible that months of being gentle with Eloise’s gut and giving her probiotics has helped her naturally outgrow some of her food intolerances. We can now dare to hope that maybe someday very soon, Mallory and I can start eating the same meals, and our biggest food issue will be that we make food to eat together and I eat 80% of it, dashing Mallory’s dreams of having it for leftovers that week.

This feels like a really really big triumph because we really weren’t sure, with Eloise’s chromosome deletion, if her food allergies would be permanent, or if she might grow out of them like “normal” kids.

She’s still not eating well, but she is gaining weight.

Probably still due to teething, Eloise struggles to eat anything close to enough. At least in the bottle department. We’ll have feedings where she drinks 5ml of milk instead of, you know, 120ml. For solids she’s eating pretty well, though — coming in somewhere around 160-300g per day. And we’re quickly building a list of tasty treats she’s been okay eating like beef, pear, pumpkin, beets, rutabaga, millet, and now banana, of course. We just mix as much breastmilk in her solids as we can and hope it’s enough to keep her hydrated.

So, while Eloise’s intake is always less than it should be these days, the great news is that she’s still gaining weight pretty well. We weigh her every 3-4 days and she seems to be averaging somewhere between 12-15g per day. If she keeps that up, she’ll easily triple her birthweight right around her first birthday — right on time.

Family is in town!

As Mallory mentioned last week, her mom and stepdad got here late last week. We’re getting them up to speed on all things Eloise. And Mallory’s mom has been cooking for both Mallory and myself, which has been really helpful.

It’s a good reminder of how much managerial and logistical overhead there is right now. Logging everything she eats, what happened in her diapers, what physiotherapy we did, what her sleep was like, etc. Logging everything is already overwhelming for us alone, but it’s super hard to teach to people. Thankfully, though, they are picking things up well in spite of how rigorous the process is.

But when you live in a world where your child could react poorly out of nowhere or a doctor could ask for a 3-week log of something at any time, you want to be able to move the conversation forward right away because you already have the data, rather than needing to wait another 3 weeks while you start logging and trying to figure out what’s wrong.

It’s been fun though, watching others be consistently delighted by how cute and talkative Eloise is. And it’s cool to see that in spite of Eloise’s sensory sensitivity, she is okay with new people in her life. Though, by the end of the week Eloise was definitely was craving some mom-and-dad-only time. But that felt nice, too.

I regret nothing.

Mallory talked a bit about her struggle with grieving Eloise’s disability. It makes total sense, and I do think that probably very shortly, Mallory will be able to fully celebrate Eloise.

But, in the meantime, about. 70-80 times a day (I really don’t think that’s an exaggeration), either Mallory or I will be holding Eloise, or playing with her, or reading to her, or just listening to her waking up, and we’ll remark something like “Oh I just love her so much! She’s the cutest little kiddo ever!” Rejoicing in her adorableness never gets old, and holding her cheek to cheek or feeding her while she grabs our fingers with her little hands is just the best thing ever.

I was hanging out with Eloise the other day while Mallory was out celebrating a friend’s birthday, and it hit me. These moments, this little girl, this wife of mine, this place I’m in, this year of just being with them, trying to win dad-of-the-year every day… these are the best days of my life.

I can honestly say I have never been happier than I am right now.

The joy that Eloise has brought into my life — into our lives — is so so so much more than I ever thought imaginable. And that’s coming from me, someone who’s dreamed about becoming a dad since I was 8.

Sure, the days are long and sometimes (frequently) hard.

Sure, we only have enough time to get done 5% of what we want to accomplish.

Sure, I have a long list of hobbies that I’ve had to whittle down to a few.

Sure, I’m frustrated that I accidentally knocked my 3D printer out of commission this week.

Sure, it’s totally overwhelming and frequently heartbreaking when we struggle with the problems associated with Eloise’s genetic deletion.

And, sure, it’s super overwhelming to look 20 years into the future and realize we may be changing Eloise’s diaper on top of balancing all the other challenges she might have by then.

But I keep coming back to these two thoughts:

1. You never just wake up and it’s 20 years later.

This is a day by day situation. And, each day, we learn a little more. We grow a little more. We gain the capacity to deal with a little more. And Eloise grows a little more, too. We are all getting stronger together.

We are growing towards Eloise’s future in increments, not in huge, insurmountable leaps. The future problems will be met by our future selves, not our present selves, if that makes sense. The first adult diaper I change will come after 17 years and 300+ days of changing baby/kid diapers. I’ll be a pro. And it’ll be ok.

2. Even if she isn’t “normal” this is still a joy-filled life

Let’s imagine for a moment that there is no such thing as a “normal” kid. Then let’s imagine that we had a choice — we could have no kids, or we could have a kid like Eloise (and I also knew how much joy and sorrows both that having Eloise would bring me.) Would I still have been dreaming about having a kid since I was 8 years old?

Yes. A resounding yes.

Every time I hold Eloise and hug her to my cheek as we look out the window at the clouds in the sky, or giggle as the crows in the yard peck at the ground, or squeal in delight as I feed her mushed bananas while funny acappella covers of classic video game music play in the background (Mallory’s idea actually), it’s an easy yes.

Having Eloise, missing DNA and all, is a wonder and a joy that exceeds all my hopes and dreams.

And when I keep that context, and just live in the absolute joy that Eloise is at this very moment then, I dunno, I feel like life is great (and exhausting and overwhelming, but still great).

I know many of you are praying for miracles for Eloise, and sincerely we do very much appreciate that. Of course any parents want the absolute best of what’s possible for their kid in situations like these.

But just know that if a miracle does happen, I’ll consider it the second one. Because the fact that she made it out alive with 19 million rows of DNA gone is a miracle itself. And I’m so grateful and proud we get to hold this little marvel every single day.

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All our thanks,

Brian, Eloise, and Mallory