Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
Once upon a time, any trip outside our home ended in a complete Eloise meltdown. It didn’t matter if it was quiet or loud, light or dark, inside or outside, cold or hot, or she was carried or pushed — Eloise couldn’t handle it. As she grew older, however, things changed and it became the... Continue Reading →
Eloise WILL walk one day. Did we ever have a doubt? Yes. But here is why we don’t anymore.
In 2012 we moved to Estonia, a northern country with only a few hours of daylight during the winter. And it was that first year we learned that darkness, even in all its loneliness and pain, can be a gift. Because when you experience darkness that lasts for a long time, when the light finally... Continue Reading →
Many of our Estonian friends and acquaintances have a (mostly) unspoken life mantra — always expect the worst to happen, that way if it does, you weren’t disappointed, and if it doesn’t, then you will feel surprisingly happy. As humans who grew up in the USA, our mantra is a bit different. Unconsciously, we always... Continue Reading →
Welcome to our newest construction project. We call it “make our house year-round livable”😅 In Estonia, it’s pretty normal for families to have what they call “summer homes” or “garden cottages”. These are often tiny places (think 20-30m2 / 200-300ft2) with maybe a sauna and a front room and a wood burning stove. No running... Continue Reading →
Back in January, before Eloise's seizures or GI issues or constant emergency hospital visits even began, we were barely making it. Specifically, Brian was on the verge of a mental breakdown with all of Eloise's constant needs and pain and issues. Back then, we had some long, tearful discussions and made some big changes. Our... Continue Reading →
“It’s been nice to have a little bit of a break from Eloise problems.” I said to Brian Sunday. We both paused, looked at each other, and started laughing. If a week with 2 hospital visits (one planned, one emergency), Eloise’s head covered in mosquito bites, 4am wake-ups every day, diarrhea still continuing into its... Continue Reading →
Today is Easter Sunday -- a day where many all over the world celebrate hope. The year Eloise was born, I made her birth announcement on Good Friday, with the faith that, someday, her life would be a story of great joy rather than of grief and sorrow. As I type, however, that day has... Continue Reading →
For the third time since we came home less than a month ago, Eloise has a virus. Which now means days of almost constant seizures. Considering she just had 5 days in a row of only 1-2 seizures per day and was beginning to act like herself again, this super sucks. So yesterday, as Baby... Continue Reading →
The short story. Eloise’s seizures have returned. We thought it was just an indication she was getting sick and they’d go away again, but they might be here to stay. And treatment options are complicated. What kind of epilepsy does Eloise have? Eloise’s seizures are related to a single gene she’s missing — SCN1A. This... Continue Reading →
Eloise's first 3-4 months were dark for Brian and I. Very dark. Very very very dark. Eloise was struggling with severe reflux provoked by extreme food intolerances. It meant she screamed for hours and hours and hours every day. Every moment she was awake and not crying, we were focused on getting her enough milk.... Continue Reading →
This last year has been a tough one for sweet Eloise and us as her caregivers. But there were still joyful times even amidst all of the pain and tears. So I decided to find a few videos from every month, to help us remember some of those good times. But also write a little... Continue Reading →
If you’re thriving in this season I am honestly so happy for you. However, if you’re barely making it day to day, know that you are not alone — we're there, too. For many weeks I’d brainstormed ways to get Brian time off. But he’d always refuse any suggestion of rest, saying he wanted to... Continue Reading →
This is part 2 to the story of Eloise's baby brother K entering our lives. You can read Making his entrance -- Part 1 here. Over the last few years, I've noticed many posts in local facebook mom groups asking some form of the question "What kinds of local playgroups or activities do you recommend... Continue Reading →
Will this baby be as hard as Eloise? Will we be as exhausted? We have no way of knowing until he arrives. But we decided that, this time, knowing roughly some of the worst case scenarios that we experienced last time, we'd rather be overprepared than try to wing it when baby arrives.
Two steps forward. One big step back.
I didn't realize how unprepared I was for the news that came. Estonia is a very tiny nation. It's got 1.3 million people which means everyone knows everyone. Options of many kinds can be limited.
My fifth pregnancy had just passed 13 weeks and it was the night before the genetic bloodtest was supposed to come back. If you asked me that night what we'd do if the results showed some sort of genetic abnormality, I still wasn't sure.
Brian and I did some soul searching Fall 2022. We'd lost 5 babies in 4 pregnancies and had a profoundly disabled daughter. Yet still, our hearts didn't seem to be hardened, even after all we'd been through. We decided it was a sign we should keep going -- we'd handle whatever came our way, just like we always did. Instead, we waited. And waited. And waited.
When Brian and I were going through premarital counseling many moons ago, we were in agreement -- we wanted 3-4 kids. Funny enough, because we were getting married so young, one of my fears was that we'd accidentally end up with far more than 4 kiddos. Yet, within 6 months of our wedding date, we had a long discussion, took a deep breath, and decided it was time to leave babies up to fate. We assumed it would only be a matter of months until we'd be posting our creative pregnancy announcement on social media. Instead, we waited. And waited. And waited.
“Do you think it’s all the people who have been praying? Because this almost happened right after you put up that post.” - Brian
They sent us home from the hospital on Tuesday the 7th, a little over 2 weeks after we first arrived -- far earlier than I'd expected. I was hoping to write a post about how after speaking to a psychologist I now have a much better undrstanding of my feelings around the feeding tube. I was hoping to write a post about how it's now been nearly 3 weeks with no visible seizures. I was hoping to write a post about how glad I am that we're home. And all that is true.
I should be jumping for joy. I should be writing a post about how incredible this is after weeks of seizure after seizure after seizure -- because it is. It really does feel like a miracle. Eloise's doctor even shed a few tears when she found out. Because we were all shocked. That's what I want to want to write about. But I'm not. (Okay, well, we did start with that.) Really, instead, I've been crying.
I keep thinking, “Right. Today is going to be better than yesterday.” Then it isn’t. To give you a bit of context of “normal” seizures for Eloise: Worst seizure control time (pre correct meds): December 2021 — 51 seizures Best seizure control time: May-July 2022 — 1 seizure total August — 12 seizures September (she... Continue Reading →
Man it’s been a rough season around here. The good news, I hope, is that it’s just a season. I had planned to write about our shorter-than-expected long Tartu hospital stay. But that plan got derailed yesterday when seizures started. But let’s give you a little background. A few weeks ago (after that weekend of... Continue Reading →
Thankfully, most days with Eloise are great — fantastic, even. But not all days are all good. Today Eloise went to bed not having had supper. And, spoiler alert, it wasn't because she being punished.
Tuesday night in our chaos from returning home from our vacation turned hospital stay, Brian and I both forgot to give Eloise her anti-seizure medication. The next morning, as we both realized it, we held our breath and hoped it wouldn’t have any consequences. But, sadly, 12 hours later Eloise had the worst seizure we’ve... Continue Reading →
Friday I got a video message from Brian while I was working from my company's Tartu office, "Hey, I'm gonna try to capture this. She's doin' something weird -- like you almost just saw it there for a second. Like she's trying to bite her fingers and then just starts shaking." I watched the video of this new thing happening with Eloise and my stomach dropped. Something was wrong. Very very wrong.
Why pumping did not work for me -- until I learned a secret. When I started pumping, it was painful. So painful that I was close to tears during pumping and, afterwards, any time even a soft shirt would touch my nipples, I’d wince in pain. A bunch of pumping moms said, “It gets better over time.” But that was not true for me.
What I wish I’d known about exclusive pumping from the start
Eloise The Tiny Fighter 