40-42 weeks: Treasures from trials

To say we’ve had a few rough patches over the last weeks may be an understatement. In case you missed recent events I posted about on Eloise’s facebook group and the stories of Eloise’s instagram page, I’ll recap it.

And then move on to those treasures I mentioned.

The very short version

On Saturday, November 6th, Eloise had an 8 minute seizure. We called an ambulance. What I had initially thought would be a short stay at Tallinn Children’s hospital turned into a 10-day visit.

In our first 12 hours there, Eloise had 4 seizures — the final one lasting 40 minutes. A tooth came in the very next day. (The first time she had a seizure, it was the day before her 2 bottom teeth came in.)

The Tuesday after we got there, Eloise had an EEG, which did show she had epileptic brain activity on the left side of her brain. (Which, looking at many other kids like her, may or may not mean she may regress over time as more seizures come. We’ll just have to wait and see.)

A week into our stay, and she had 2 more seizures — both, thankfully, were over in seconds.

Monday of the following week, 10 days after we arrived, Eloise and I were discharged. On our way home, we picked up her anti-seizure medication called Keppra and a “rescue” drug called diazepam (which is actually valium) to give her if she has a seizure at home that lasts more than a few minutes.

This past week, after she had been at home a few days, she seemed to have a bit of a fever and then had another seizure — this one lasting 15 minutes.

The next day she was sleepy, vomited a lot, had a low grade fever, and had diarrhea. All but the last symptom was similar to the day after the last time she had the bad seizure.

However, it turns out she had a stomach bug — probably norovirus — which I’m guessing she picked up from the hospital. I got the same bug on Friday afternoon but recovered within a few hours. Sadly, though, Brian started feeling sick as I got better — and days later he’s still feeling awful.

(And if you’re in the U.S. wondering “How much did all this cost?” I was charged a caregiver’s fee of equivalent $2.82 per day for that 10 day hospital stay. Three months of her anti-seizure medicine was less than $3 and 5 doses of diazepam to rescue her from a seizure was less than $2. There were no copays. We didn’t have to pay for the ambulance. And there are no more doctor bills coming. One of the many many reasons I am so grateful to live in Estonia.)

Treasures we came away with

I was so grateful for so many of your all’s prayers and good thoughts and support while we were there. It made so much of a difference — I didn’t feel alone. And, very quickly, our time there turned into a great gift rather than a great trauma.

So I thought I’d explain how that happened.

When Eloise was born we were in the hospital together for 12 days. This time, we were in the hospital for 10 days. The first time was hugely traumatic. This time wasn’t — although the circumstances that got us there and the potential negative outcomes were far, far scarier this time around.

So I thought it might be useful to reflect on some things that came out of this.

1. Knowing what to expect drastically reduced anxiety

When Eloise was born, I absolutely did not expect her to end up in the NICU (intensiivravi for Estonians or special care nursery for those elsewhere). Even so, I think I could have mentally accepted her stay if I understood why she was there. However, 9 months later and I still have no idea why she was kept in the NICU for 6 days. Doctors seemed unable or unwilling to speak with me to explain what was happening, why she needed to stay, or what I could expect next. Add to that the stress of pumping every few hours, trying to follow NICU rules that changed constantly with new staff, navigating a flood of post partum hormones, healing from a fresh c-section, and missing Brian who I hadn’t really been able to see for nearly a month — and I was an absolute emotional and mental wreck for those 12 days.

This time was far easier.

I knew from my first experience that they don’t normally release patients — or do much of anything — on weekends so I didn’t expect much to happen. Also, I was only pumping 4 times a day this time rather than 9 or 10 which was far less stressful. And there was a doctor assigned to us — “our doctor” — who came in to update me each day with what her plan was, when we would likely go home, and what to expect. That helped tremendously.

Knowing why things are happening and what’s next makes a massive difference.

2. It was a great opportunity to learn and use more Estonian

I happened to have a great roommate from a small town in Estonia (I was surprised to find she’d never even heard of AirBnb). And, despite the fact that she did know some English, she was content to only speak to me in Estonian for our 7 days together. The nurses, too, only spoke to me in Estonian — with only a handful of exceptions.

The new useful words that will stick with me the most are märg and märjad. (I used eba kuiv — not dry — because I didn’t know the word for wet.)

Mu voodi on märg. Tema riided on märjad.

My bed linen is wet. Her clothes are wet.

Way better than paying hundreds of euros for an intensive, weeklong Estonian immersion course.

3. It was such a delight to spend so much uninterrupted time with Eloise

Eloise is a breath of fresh air to my soul. Her voice. Her songs. Her howls of delight just make me so darn happy. During the weeks at home, Brian and I usually trade off where one of us takes care of her while the other gets stuff done. With my parents here the last month, they have taken her even more — which has allowed us to mark off even more from our to-do lists.

But this was an opportunity of 10 days where all I could do was be with her and accomplish absolutely nothing. We did a lot of dancing and giggling and hugging in between her long eating sessions. I feel enormously grateful. (Brian was a bit jealous by the time we got home.)

I decided that being a single, stay-at-home mom would be amazing. As long as I had 15 paid servants doing my house work, cooking my meals, washing our dishes, taking care of bills, updating family, preparing her food, and pumping her breastmilk.

Otherwise, being a single mum was not a sustainable long-term solution, at least not for my mental health.

4. Maximize her sleep time for “me time”

This concept took me most of the week to figure out. Early on in the week, like at home, when she would fall asleep for a nap I would rush to wash her dishes, pump, wash pump parts, update friends and family, and do any other things that needed doing. Which meant that after 5 days in the hospital, I had read approximately 1 page in my novel and had not showered.

A.k.a. no “me time.”

So, later on in the week, I started to get smart. We would only be in the hospital temporarily, which meant our normal routine of doing physiotherapy after her naps and doing all the chores while she slept and trying to feed myself during her nap time? I could throw all that out the window. We were in a crisis, so different rules applied.

Instead, I finally started putting Eloise in her little blue chair on our bathroom floor — as long as she would tolerate it — while I washed her food dishes and my pump parts or even showered. I put her on my lap while I ate (and gave her a few pieces of my meal while I was at it). And I brought her with me to the floor kitchen to consolidate and freeze leftover breastmilk and prepare her solids.

Which meant that by the end of the week I was reading more like a chapter or two a day, and feeling a lot more balanced with more “me” time back and helped get me through.

5. I’m now eating everything again. Cautiously.

For those that have been following, food intolerances have been a huge theme for Eloise for basically her entire existence. She has had some pretty pain-filled reactions and my diet has dominated a lot of what we were trying to solve for many many months.

Obviously, being thrown into the hospital was a surprise — so we hadn’t gathered a bunch of freezer meals to send with me to eat. (Although I discovered in retrospect we could have.)

Brian and I prayed that first afternoon Eloise and I were there. She had been doing so well the past month, not having any negative reactions to anything we gave her — including foods she had previously reacted violently to like bananas and oats. So we thought 🧐 hmmm. Maybe we should speed up the trials. When we were praying, Brian got the thought of “There is no need to be afraid. Besides, if she does have a reaction, what better place to have it than at a hospital where it can be noted and treated.”

So that’s what we did.

I had dairy-free meals the whole week but ate all the hospital food. And, well, I think Eloise may just have grown out of all of her intolerances — at least the ones through breastmilk. So far, over these last weeks, I haven’t noticed any super clear signs of any food problems. (Other than one direct reaction to a baby food the hospital gave us. So we paused that one after she reacted 3 times. I’ll try something like it again in a few weeks to test and see if it was an actual reaction.)

That’s huge.

So that makes me a very thankful mom — I can now go back to eating everything. Even dairy products.

What a massive, massive gift this hospital stay gave us.

6. We can now make a hospital bag to go

Gosh I’d really like to avoid that. (Although we’ve decided Brian will go instead of me, next time.)

With that 15 minute seizure and Eloise eating dangerously little now that she has this stomach bug, we have been on the edge of going back to the hospital a few times now. I’m still hoping we can stay away, but there’s no way to know.

In the startup world, after some big event happens (normally bad) you do a retro or postmortem. You go through the timeline of events, seeing what went wrong where, and then you figure out how you could avoid the same problem or do better next time.

Since Brian and I came from the startup world, that’s exactly what we’re doing here.

We’ve been putting together a list of what we need for a quick hospital bag (like a set of clothespins to hold a blanket over her crib to darken it for her naps) so that either of us, at a moment’s notice, can be ready to grab everything and be out the door.

7. The problem solver in me really enjoyed “camping”

No joke. I guess because my brain wasn’t stressed this time, I really enjoyed the challenge of trying to figure out how to get stuff done without our normal tools.

There are actually a lot of other beautiful emotional revelations that came out of our stay at the hospital. But that’s another few blogs for another day.

Until then, I’m back to (mostly) solo parenting while Brian heals. Hopefully not for too much longer.

Thankfully, my parents came by for a few hours today to help which gave me a chance to write this up.

I hope, at the very least, reading about our life helps you appreciate those special to you even more. While our problems may not be the same as yours at times, I hope it helps your burdens feel a little bit lighter knowing you’re not the only one struggling.

Hugs from us to you.

Mallory, and sick little Eloise and Brian