35 Weeks: This was a rough one

Much of this week, a dark cloud of concern hung over Brian and I as worst case scenarios began to play out in our minds.

In fact, it’s been a few months since we worried like we worried this week. (You might have already read some of it in my post about control being an illusion I put up a few days ago.)

But as I sit here on Sunday, reflecting over our week, I realize a lot of really great things happened I didn’t even notice because I was so focused on the parts that weren’t going well. So many bonus discoveries, even in the midst of the hard stuff.

I guess that’s why I write this every week. To celebrate and remember and notice how far we’ve come.

So here is this week’s addition in which I also try to describe the timeline of emotions in each section by using a series of 5 emojis.

☹️🥺😫🥲🥳 NOT EATING

This last week we put half-full bottle after half-full bottle in the fridge feeding after feeding throughout each day. And, every night, as we gazed at a refrigerator shelf full of untouched milk, Brian and I looked at each other with knots in our stomachs and concern on our faces.

Considering just a week before she had a day where she ate more than I pumped, it was extremely worrying that nearly half of her milk was uneaten now. Something had to be wrong. Really really wrong.

That’s why, in a particularly low moment, I wrote about it.

In that post on how helpless we felt, I mentioned that parents of kiddos like Eloise who had talked about teeth all said their little one’s teeth didn’t come in until well after 12 months. But then, after that post, two other parents wrote me and said their kids’ teeth came in right on time. Many of you, after reading about her behavior, also said you were sure she was probably just teething. (Thank you, as always, for your suggestions!)

So, afterwards, I consulted Dr. Google and went through a baby teething symptom checklist to see if it fit her symptoms

• their gum is sore and red where the tooth is coming through (NO)
• they have a mild temperature of 38C (NO? – when we pointed the laser thermometer at her forehead, a few times it registered a temperature, but when we used a regular thermometer under her arm, it was in the normal range)
• they have 1 flushed cheek (NO? – although a few days she’s had 2 flushed cheeks)
• they have a rash on their face (NO)
• they’re rubbing their ear (NO)
• they’re dribbling more than usual (YES – but I think she might have been doing this for awhile)
• they’re gnawing and chewing on things a lot (NO – just sucking her fingers, like usual)
• they’re more fretful than usual (NO – she’s generally been quite happy other than visits to places outside our home)
• they’re not sleeping very well (NO)

So, from looking at that list, it looked like teething was not what was happening.

Plus, they didn’t list any symptoms like “eats over a third less than usual.” Plus, her eating troubles had been going on for a week with no visible sign of teeth, so that couldn’t be it. Surely.

I thought, well, one way to test it is to give her teething gel that numbs the area that might be in pain. So we tried two different types of gel on her bottom gums where Brian and I thought maybe, just MAYBE we could feel something a little sharper. But it didn’t make any difference at all.

(Okay, well, she did have two meltdowns on two days in a row that came 10 minutes after giving her the teething gel the pharmacy recommended this time. So, the difference it made was some sort of allergic-like reaction. So we will be throwing that gel out.)

So that was worrying.

Because if it wasn’t teething that was causing her to eat less, and it wasn’t a change in my diet (I hadn’t added any other foods in the time period before it began), then that meant she was regressing. Regressing massively. And considering she was losing weight this past week faster than she had been gaining it the week before, we were imagining we might need serious medical intervention soon.

But. Oh man. Hallelujah. Thank you, Jesus.

As of this morning, Sunday, it’s clear this kid is definitely getting two teeth in. What a relief.

And, even better, today (Sunday), we haven’t had to put any more half-full bottles into the fridge. She’s keeping up with my pumping again. So I think hope is in sight!

Plus, as a bonus because we were worried about her weight loss, we came up with a new idea that I can’t believe we didn’t think of before. At the end of each day we started scraping the fat layer off of the top of the untouched milk leftovers and giving her all that separated cream in one of her feedings — for extra calories.

I think the reason we didn’t think of it sooner is because she was eating most of what I pumped. Still.

Regardless, I cannot explain to you the relief that Brian and I both feel. I think — I hope — she’s going to be okay.

It was just teeth. Whew.

🙂😕😓😲🥳 PHYSIOTHERAPY

Worried about her eating this week, we were willing to try anything to see if it would help.

So, for four days we didn’t do any physiotherapy exercises during the day to see if it would help her eat more. (Surprise! It didn’t help.)

But what did happen is that on the occasions where Brian or I left her on the floor, we kept finding her on her stomach, protesting loudly. It’s gotten to the point that nearly every time we’ve left her alone this week, she’s automatically rolled to her tummy. Which, ironically, she hates.

Someone said you can consider that a baby has mastered a skill once they do it so many times you stop counting.

So, rolling from back to belly? Mastered!

🤪🧐😌😴😇 SLEEPING

Both the sleep consultants and I were so worried about Eloise’s eating this week that we decided to put a pause on sleep coaching until her feeding got better.

Yet, here we are and it is the second day in a row that Eloise has taken two long naps — without us helping at all.

After the coaching help (and, amazingly, no crying from Eloise), she now clearly prefers to fall asleep without the distraction of mom or dad. And since she can now fall asleep without us, she can now also fall back asleep when she wakes up between a sleep cycle. Without us.

Several nights this week Eloise has even slept 6-8 hour stretches after going to bed, and didn’t even wake up during dream feedings. I’m hoping this extra hour or two of sleep she’s now getting every day will help her tiny little brain develop even more.

Plus, with extra time in the evening, that meant Brian and I could actually start thinking about spending some focused time with one another. Almost like a real date!

I’ll be honest, now that she’s falling asleep so easily on her own, I already miss those sleepy baby snuggles.

😁🤨🥺😖😡 TARTU APPOINTMENT

The first time we went to see the Tartu feeding team at the start of September, it went SO well. One of their team members was missing at the time, but it still was so encouraging and positive and uplifting and helpful. It felt like we had a clear, actionable plan. It felt like they listened. It felt like they asked great questions. It felt like they cared.

But this time? Wow. What an entirely different experience.

It turns out that missing team member from last time does not seem to have the same deep empathy and people skills as the other two. She didn’t speak English at all, so she used the other two as her translators which meant they basically didn’t have a voice of their own as they struggled to translate her angry, demanding sentences.

We left so frustrated. Not only did Brian and I have to work hard to get anything really useful and actionable, but I felt like I had been scolded like a little child. The missing team member seems to be a nutritionist, as she kept lecturing me, stating over and over that my food diet has far too much fat and far too few carbohydrates. At one point she said, “Why don’t you just eat everything? If you can’t, then just stop giving her breastmilk.”

I was almost in shock. Maybe she just missed the memo that Eloise has a lot of food intolerances.

Thankfully, one of the women with people skills gently added, “Is there perhaps a reason your diet is like this? Maybe you needed it to be this way.”

I told the angry lady that I agreed with her assessment, yes my diet is not ideal, but it’s been really tough as we can only trial one food or supplement at a time, and only every 3 days if everything works out perfectly (which it rarely does). We have had to figure out which things we trial in what order and have had no one to guide us. I told her I’m happy to prioritize trialing something that is high in carbohydrates. (Although I still don’t know what exactly that’s solving. Because that seems like a very minor problem in the long list of things we’re trying to solve with Eloise’s eating. I highly doubt a diet low in carbohydrates is affecting Eloise’s weight gain or amounts she’s eating.)

The good news is that they did at least do an x-ray on Eloise’s lungs to see if she’s ever had any damage from possible aspiration. And they did take a sample of my breastmilk to check the caloric values of it. So it wasn’t a totally wasted trip.

But I was so disappointed.

Afterwards, I realized I have this big question in my head. Maybe one of you can answer it.

It seems that doctors here are very very very focused on baby weight gain. From the beginning it feels like everything is about her weight, or increasing her weight.

Yes, I do realize that 99% of other babies are larger than Eloise. But she’s been that tiny, percentage-wise, since her birth. Not only that, but quite a large portion of kids with her same chromosome deletion also struggle to grow normally — even if they’re on a feeding tube. A 17-year-old the size of a 9 year-old. A 53-year-old the size of a 10-year-old. A 4 year-old the size of a 2 year-old. A 1-year-old smaller than some newborns. Smallness is just very likely in her future. (Although not all kids like her are small. Some start out normal size and stay that way.)

I have so many questions.

Almost at every turn a doctor has suggested swapping at least a few breastmilk feedings with formula. But, if I understand correctly, formula and breastmilk are identical in the amount of calories they provide. So can someone explain how swapping the same amount of calories in breastmilk for the same amount of calories in formula might help her gain weight? I would think if they were worried my breastmilk was somehow insufficient, wouldn’t someone have tested it before now?

Anyway.

Eloise did start screaming almost immediately when we started the feeding appointment which, clearly, didn’t help them or us communicate clearly. Quickly, Brian left the room to try to calm her in the hall while I unsuccessfully tried to talk with the team. So, between driving 6 hours, Eloise crying nonstop, and the lady unhelpfully lecturing us, both Brian and I were a bit on edge — and, unfortunately, a little short with one another — for the rest of the day. When we got home, we noticed neither of us were being particularly kind to one another. So we apologized and hugged it out.

However, one useful thing did come out of the trip. At one point when Eloise was crying hysterically, I turned on her white noise machine and, almost like magic, she instantly stopped crying. Well, she stopped crying until we got to the next room for her next appointment. And then nothing could get her to stop. But maybe the white noise machine will be able to help sometimes.

At least she was able to do all of her naps in the car without much problem.

🤨🧐🤓🙂♿️ HER DISABILITY PLAN

Monday we had 3 back-to-back appointments with specialists to help get Eloise assessed for a personalized rehabilitation plan. Luckily, a friend Olga came with us just in case we got stuck and needed translation but it all went smoother than I had thought it would.

Eloise made it through most of the first appointment — occupational therapy — without a huge meltdown. But by the time we finished it, between the unfamiliar environment, teething pain, and being hungry and tired, she really broke down. That’s when I made a discovery that if we went to the bathroom and turned out the lights, it helped calm her some. So she fell asleep in my arms and I transferred napping Eloise to Brian so I could run off to get my second COVID shot nearby while he talked to the next specialist.

In the end, it appears that these three women will give their notes to a coordinator, who will then make an individualized disability plan for Eloise and submit it to the government.

I’m struggling to figure out really what that means other than the fact that the Estonian government will “unlock” more services for her based on that plan.

I guess we’ll find out.

🙃🤨🍐🥩🥣 SOLIDS

I realized at some point that the things most parents of regular babies really stress out about and research — like starting solids — is something I have just missed. I’ve been so focused on solving Eloise big problems that I just have no idea what we’re supposed to do with solids.

We started solids a little late so have I increased her amounts too fast or is it still too slow because she’ll so old? Do we need to really focus on more variety or are just the same few foods okay for awhile? If she doesn’t eat much the at first feeding, is it okay if I give her more later? At the moment because she’s taking 3-4 naps a day, there’s such a short window of time in between that it’s hard to get both a milk feeding and a solids feeding in, so is it okay if I offer solids first? I know we’re supposed to try out new foods earlier in the day to watch for reactions but can she eat solids later in the day?

So many questions. It would have been nice to ask some of those questions at our Tartu appointment. Sigh.

But at this point, 🥁, I think she has 3 safe solid foods for sure.

• 🥩 Beef (veiseliha)
• 🍐 Pear (pirn)
• 🥣 Millet (hirss)

Which also means I think I can add beef and millet to my own diet. Now that’s worth celebrating! 🍾

😳😣🙃🙃😅 ALLERGISTS

Speaking of foods, between a few reactions of my own and many of her reactions to food, we are far past due to see an allergist.

But gosh, mentally it’s been hard to sum up enough energy to complete this administrative task of getting all of this scheduled. It’s been on my “to-do” list for months. But, finally, between emails to my family doctor, emails to her family doctor, many late-night scrolling through the Estonian healthcare portal to figure out how to do stuff, phone calls with our geneticist, phonecalls with a secretary, emails to an allergist followed by a quick call with her, and both Eloise and I finally have appointments with allergists.

My appointment is this Monday. Eloise’s is next week with a doctor that came highly recommended from our incredibly kind and empathetic geneticist doctor. I’m hoping at least one of them helps with something.

😔😌🙂🙃😍 NO COVID SHOT SIDE EFFECTS

It’s been 7 days since my second Pfitzer shot. I didn’t have any side effects either time. Unless you count a sore injection site. And Eloise hasn’t shown any reaction at all. The highest likelihood for fever and possible fever-induced epilepsy in her, if it was going to happen, would literally be now. And she’s not showing any signs.

So I feel a lot of relief. Brian is fully vaccinated. I’m fully vaccinated. Eloise is getting antibodies to protect her if or when Brian or I ever test COVID positive. And we can get rapid COVID tests at nearly any local pharmacy.

And as an added bonus, when my parents get here in a few weeks, if Eloise will let them babysit her, then Brian and I might actually be able to go out to the movies with our fancy COVID passports.

🎱🎉🎊🍾🥳 8 MONTHS OLD

Oh. Right.

Eloise turned 8 months old this week. When we went to the friend’s house, I asked if she would snap a few quick photos of us. There was a small timeframe when Eloise wasn’t crying, so we managed 1 okay family photo.

Two more things.

1. I started an Instagram page for Eloise. Sometimes I remember to update it. But you can follow it: eloisethetinyfighter

2. You can add your email to the box below and when I publish a blog, it’ll be emailed straight to you. Just in case that’s your thing and you hate facebook formatting as much as I do.

Hugs and love from us to you,

Mallory, Brian (who is bending down in this photo cause I’m so short), and tiny Eloise