Week 9: Helping the world knows she matters

March 28, 2021

Originally posted on facebook in 2021 the same month we received Eloise’s diagnosis.

It’s incredible what sleep will do.

I’ve had almost 6 hours of sleep for 3 nights in a row. Thursday and Friday night, she surprised Brian and I and slept for 6 hours in a row. Saturday night she had a few long stretches of 3-4 hours.

Gosh, if she keeps this up, we may become semi-normal humans.

This week brought quite a few things.

• Our first family doctor appointment (we’ve already started looking for a new family doctor — I won’t go into details but man we’re gonna have to do better than that)
• Our second physiotherapy appointment
• The discovery that once we get her disability registered in Estonia, she will get a support person to help us, especially with therapy appointments.
  The good news that we can get a referral to a private clinic 10 minutes from the house for physiotherapy.
• Julia, the saintly neighbor who has been helping, decided to come along to the appointments (and had to wait in the car) and it was sooooo helpful for her to be with Eloise in the car.
• I started trying to do walks. And this morning, now that Brian tilted the stroller up so she won’t throw up in it, we went out for it.

She still struggles more during the daytime hours and won’t sleep but for 5 minutes or 30 minutes (although occasionally she’ll surprise us with a 3 hour nap) but it’s still far better than it was 3-4 weeks ago when she screamed for hours and hours without being able to be consoled.

I’ve been thinking more and more on that story of “she fought so hard to exist because this world needed her.”

It does mean that Brian and I won’t get to be the parents that we were imagining. We won’t get the “kid experience” we were expecting and almost every other parent we know gets. It does mean there’s a lot of things we have grieved and will grieve because it won’t happen.

That grief, though, is about us. And what we wanted. It’s not about her.

But if she was meant to be, then she deserves parents who give her what she needs. Who become who it is that she needs them to be. So we’re going to do our best to try to become those humans.

The clothes I had for Eloise were 99% hand-me-downs from friends here. Mostly boy clothes. I didn’t mind that she’d be wearing boy-ish or gender neutral stuff because I thought, “Taking care of a baby well is far more important than fashion. Who cares what they wear? Besides, some day when she has an opinion, we can spend time with her picking out her fashion.”

But now things have shifted.

Back in the day, when I worked with mentally and physically disabled adults and kids, their normal outfits made them look often like they belonged on the streets with homeless people. Mis-matched clothing items that didn’t really fit. Often with stains and holes. It gave off the unconscious vibe of, “They aren’t all there so they won’t care. So I don’t care, either.”

So I realized that my old “Ah, who cares how a baby dresses?” probably needs to shift. She’s going to have to overcome so many challenges already, so it’s important I begin sending a signal to the world, all these strangers she sees, of “This baby matters.”

I bought a few clothes from H&M online this week. I wanted stuff where I could more easily touch her bare skin throughout the day. There’s so many studies on how soothing it is for babies, so I needed some that made it easier. It didn’t hurt that they were cute, too.

March 31, 2021

Original facebook post.

Boring medical/normal baby update to follow.

Yesterday was one of her best and worst days.

Poor Julia is really sick and hasn’t been able to come over this week to help (no worries, it’s not Covid, she had that a few months back already), so these have been my first days “alone” with Eloise all day. Pumping makes it tough to juggle everything, and Brian has had to help a little too, but yesterday especially I was really impressed.

I was dreading the 30+ minute car ride to go see the Orthopedic surgeon to check on her toes. I threw on “Oh Brother Where Art Thou” soundtrack (I sing many of the songs to her daily because I memorized a lot of them back before social media was a thing.) And… maybe it was coincidence but she calmed down. She didn’t really sleep, but she was calm.

And she was mostly calm as they checked her hips (no hip dysplasia!) and spine (looked great!). They didn’t seem concerned about her fused toes and just said let’s check them all again in a year or two. And although she still cried a lot at physiotherapy we had immediately afterwards, it was less than usual. And the physiotherapist was almost complementary of Eloise today. Gotta take the wins whereever we can.

And on the way back, maybe because of the magical kid mirror with lights and songs (thank you, Elerin!), she fell asleep almost immediately.

And thus began one of the calmest daytimes she has had in I don’t know how long. I thought, “Wow! It’s been almost exactly 4 weeks since I last had dairy, although soy has been harder to find and eliminate. Maybe it’s that?” She would happily eat (although still showing some signs of pain.) Then fall asleep. And had a few naps longer than 30 minutes. I was stunned.

Because of the rashes she keeps breaking out in and some days fussier than others, I have an itching suspicion there’s still something in my diet she’s reacting to. So out of desperation I did online grocery ordering some basic foods to start an elimination diet. And, thankfully, my saintly friend just got done isolating after her trip home and came over and cooked all these random ingredients (lamb, sweet potato, potato, rice, zucchini, and pears are all I can have for a bit!) to help me meal prep.

By the time she arrived in the early evening I thought, “Well maybe we’ve actually got this figured out and I don’t even need to start on a low-allergen food diet and then start adding back. She’s been great today!” But she started cooking anyway.

And within an hour of me going to bed at 7pm, I started hearing little Eloise scream in the next room. And that started hours and hours and hours of screaming.

I stopped eating oats a few days back just in case but today I cheated and had decaf coffee and oat milk. Her screaming started after she’d drank the milk I produced then. Was it the oats? The coffee? The few teaspoons of sugar I put in there? The pork I had for lunch? The beet cutlets for breakfast? The time of day? None of the above and she just… is developing neurologically?

There are too many questions of what might actually be affecting her, so now Brian has food to eat thanks to meal prepping from this weekend (Yay Gina and Irene!). And I have a bunch of randomly cooked food items (God bless Nene!) that I will be able to eat over the coming days. I’m hopeful that we will see a change over the next few weeks and I can slowly start adding other foods to my diet.

Regardless, it’s been an absolute joy to be with her for full days these last few days. She really is such a sweet, tiny little thing that makes my heart happy to be with her.

And she’s started sleeping long stretches. I don’t want to jinx myself and say “it’s a thing” now, but right now she’s going on 7 hours straight. Watch, she will no longer do it after I type this up.

If pumping is the only thing that is keeping me from being able to take care of her easily during the day (and, nope, she’s not latching still) Brian and I briefly discussed maybe I should stop and we switch to formula. But doing some quick internet research it turns out kiddos that were exclusively fed breastmilk their first 3 months had 20-30% more white brain matter growth. Knowing all the mental and neurological challenges this kiddo will have through life, I would always regret not trying to give that to her.

There are a few pretty big up-sides of her not nursing directly though.

1. People can help be with her and feed her. And help is something we definitely need right now.
2. Right now I’m producing around 40-50% more than what she eats every day. Which means I can freeze the extras and give her breastmilk far beyond when I’ve stopped pumping. I want to give her every advantage I can at this point. She’ll need any help she can get.

I’ve made it almost 9 weeks so far exclusively pumping. (Only 6% of women exclusively pump. Who knew?) Which means I only have 3 weeks to go until my supply “regulates” and I can gradually move to less pumping sessions every day. So only 3 more weeks to go with the more insane pumping schedule before I can move into a way better rhythm. If all the info on the internet is right, I can move from my current 9-sessions-a-day to more like 6. Wow. That would be amazing. I can’t even imagine how I will function with more sleep. (From when I start “sleeping” to when she “wakes up” I do 6 pumping sessions. That is a lot of middle-of-the-night pumping so that I can be more present during the daytime. But it also means a lot less sleep!)

Today we’ll visit the private clinic doctor who will hopefully refer her to do physiotherapy 10 minutes from our house, rather than 30+ minutes. The lady has incredible reviews online, so hopefully it will be a positive appointment for us both.