I’m guessing anyone who has had a baby will tell you they are complicated little creatures. Clearly, Eloise is no exception.
In photography, to take a technically great photo you need to balance aperture, shutter speed, and ISO. For Eloise, to help her live her best life, we need to balance her sleep, her physiotherapy, and her feeding.
By early August, with massively reduced pain levels, way less reflux, and Brian at home, we could actually start fitting in regular physiotherapy exercises to her day. By late August, we got her to take a bottle and saw huge improvements in her feeding. Which it was why it was finally time to tackle her poor daytime napping, in hopes it would help with her development. (I hoped she would keep her poor nighttime sleep habits because she got more food that way.)
Because one thing that’s now become pretty clear is that being tired (due to her low muscle tone) is at the core of why she can’t develop or do more.
Not eating enough? It’s because she gets too tired eating.
Not developing enough physically? It’s because she doesn’t have the energy to practice more.
Not sleeping longer than 33 minutes during the day? It’s because she’s so tired her body is flooded with stress hormones which won’t let her sleep.
And then the vicious cycle continues.
So if we could just get her more rest then she’d improve in all three areas, right?
Sigh. I wish.
We’re trying not to worry.
Area 1: Physiotherapy
We had been going to a physiotherapist 10 minutes away but, as you might remember, for months this summer, Eloise started screaming as soon as we entered that room. And then kept on screaming. Since our physiotherapist was going on vacation for a few weeks in mid August, we thought we’d take a break from her (poor gal I think was a bit traumatized herself from Eloise screaming every time) and try out Fysiopai — a pair of highly recommended physiotherapists in Estonia that make home visits.
It took awhile but it finally happened! Eliia finally came on Saturday! Between family emergencies, a possible COVID exposure, and life, she finally made it. But it was well worth the wait.
Eliia was so kind and helpful and interested. She really spent the time beforehand and during the appointment not only to assess Eloise’s current skills, but to help Brian and I come up with a routine we can do every day.
Thankfully, Eloise did not scream through the entire physiotherapy session — just part of it. Eliia confirmed to us that Eloise definitely tires quickly, so long physiotherapy sessions — or doing exercises if she is stressed or crying — aren’t great for her. So our hope is to start trying to do shorter sessions when she wakes up for her nap, and then scatter in the other exercises throughout the rest of her awake time.
I’m a little afraid we will forget and miss some of these exercises that could be really vital to her development, but we’ll just have to give it a try and hope we’ll get in enough.
Area 2: Sleep
We’ve been working with two kind, hands-on, patient sleep consultants from Sweet Baby Dreams. One is an American-New Zealand gal married who lives in China. And the other is a very kind Estonian. (Because they also do sleep consulting in Estonia.)
These last few weeks, when Eloise would wake up, I would find her sideways with her legs up over one side. Which is why, as part of sleep coaching, they suggested we put her back in a crib (these last few months she had been sleeping in a nest with hard sides that was in our bed).
Between her own sleep space, a consistently darker room, and her falling asleep without food or touch from us, she has been quite content with next to no protests. Which makes a mama’s heart both feel better and worse — cause I love those baby snuggles but I feel more at peace knowing she doesn’t seem to be bothered by the changes. At least, if she is bothered, she isn’t crying — which is her normal way of communicating to us she’s unhappy.
I can’t argue with the results. So far, Eloise is pretty consistently sleeping way better through the night with far less wake-ups and has 1 or 2 naps every day that are now longer than her old pattern of 32 minutes.
And all of this without us letting her cry. At all. (At least there’s no more crying than usual. This kid can still be fussy.)
Great, right?
Well… that’s led to some issues.
I think.
Namely, in the third area.
Area 3: Food
The theory of our sleep consultants is that if she did less physiotherapy (meaning got less tired) and slept better at night and during the day, then she would have more energy to eat. And she’d eat better.
I mean, the logic seems sound to me.
But that has, for whatever reason, not been what’s happened this week.
I would say she’s eating less in total because she’s no longer waking up 2-3 times after we put her to bed and isn’t waking another 2-3 times in the early morning hours. I would hope that with more sleep, then she would have more energy to eat during the day. But not only has she not been eating more during the day, she’s actually been eating less at each feeding. So when you go from 8-10 feedings a day to 6, and eating less at each, it’s a big deal.
Although a positive thing is that she is eating quickly, now. In 9 out of 10 feedings she’s finished in 10 minutes or less. So… that’s at least nice. We couldn’t even be attempting to do sleep training or physiotherapy if she wasn’t eating so quickly now.
But it’s her amounts that just worry us overall. For her size she should be at 795 ml per day. Before sleep training, she had been eating 700-740 most days, but this week it’s usually been far lower.
- Monday: 747 ml (this was actually a great day, thankfully!)
- Tuesday: 652 ml
- Wednesday: 706 ml
- Thursday: 609 ml
- Friday: 662 ml
- Saturday: 593 ml
- Sunday: 563 ml
I’m hoping — we’re hoping — that maybe it’s just her little self feeling overwhelmed with changes and that, pretty soon, the extra sleep will give her more energy to eat more again.
So if you’re the praying type, we’d love your prayers. Because, unsurprisingly, feeding difficulties are likely going to follow little Eloise and us for many, many years.
This week will be tough on little Eloise
Today, Monday, we have three back-to-back appointments to help get Eloise assessed for a rehabilitation plan. From the looks of it, we’ll be at the assessment place in a nearby town for almost 4 hours. I don’t even want to think about how this will affect her sleep or eating, let alone how much she’ll likely scream during the visits.
Of course, smack dab in the middle of those appointments is when I have to go get my second COVID jab — luckily the place is a 5 minute walk away. Last time I had no side effects at all, so I’m hoping the same will be the case this time. But I’m more worried about Eloise than me. Graphs show that if Eloise is affected, she’s at the most risk towards the end of this week.
On top of everything else, on Thursday we will make the long 2.5 hour drive to Tartu to meet with the specialists there to get Eloise some x-rays and diagnostic tests. They want to make sure she isn’t silently aspirating and that no damage has been done to her little body.
I’m really hoping everything is clear — the most common cause of death for kids like her is silent aspiration. But even beyond that, I think at this point my heart would break a little if it turned out we had to get her a feeding tube. Even still, if it came to that, I know we would deal with that, too. And our world would not end.
So, yes. Good thoughts and prayers from all of you are needed this week. Because Brian and I can already feel the exhaustion coming.
Hugs to all you wonderful humans,
Mallory, Brian, and little tiny Eloise
Eloise The Tiny Fighter 
Leave a comment