Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
I grew up with dogs, but always thought of myself as more of a cat person. Brian is more extreme. He’s told almost everyone we know for as long as I’ve known him that he doesn’t like dogs. Eloise, unlike her parents, doesn’t discriminate — she seems to like all furry animals.
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.
I swear I remember reading long ago that parents were supposed to look forward to a golden period -- a few months after your baby was born but before they learned to crawl. Because your baby would laugh and smile and coo but weren't yet at a place where they were mobile and constantly destroyed your house. Well, I think we’ve finally made it to that golden period in Eloise’s life. And there are so many things to celebrate in its midst.
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
Before you commit, you'll wanna know WHY you're pumping
I pumped for 16+ months -- I didn't think I'd make it past 1 week
Eloise and I went to our first birthday party together yesterday. Sweet little Lilli turned 2, and her mom is a fierce advocate of taking care of your mental health while parenting little humans. The party was a 45 minute drive from our home but I realized last minute that it was at a petting... Continue Reading →
Thursday was a sacred day. As I made scrambled eggs for breakfast, Eloise happily rolled around on the floor -- entertaining herself with whatever objects she found nearby. She seemed so happy that even once the eggs were done, I decided to take a few minutes to empty and re-load the dishwasher. Then I sat... Continue Reading →
While training to be a counselor, a friend once said he learned never to assume you know what emotion someone has about an event. "Maybe a woman just lost her long time husband and you think, 'Gosh, I'm sorry, that must have been tough.' But you never know. Maybe he was a violent alcoholic and so her reaction was actually, 'Thank God he's gone. I'm finally free!'" So when you watch this video of Eloise, do you feel pity? Excitement? Or maybe even anger and frustration?
It feels like Eloise's development has slowed down a little this last week. Other than the fact that we can now cut several of her finger nails without screaming (thanks in large part to her beginning to touch different textures with her hands, which helps her get used to something touching them). And the fact that she hasn't had a seizure for over a month now -- the longest she's gone without them since they started. Regardless of it seeming like her development is slowing down, though, there's a lot more stuff that IS speeding up.
If you know our story, you know we bought a fixer-upper home while we still didn't know if any of our fertility treatments would work. Our house was a project Brian and I could work on together whether or not our dream of having kids ever came true.
These last few weeks, something magic seems to be happening. It's like Eloise has suddenly realized there is a world beyond her and she wants to explore it. She's reaching for things, transferring objects from one hand to another, exploring textures and lights and environments.
A post with practical information about things we are selling and how to get in touch.
This kid works so hard. It melts your heart. To help practice biting and chewing, we’ve started giving her a freshly baked cheese roll or cinnamon roll a few times a day. (God bless pre-frozen pastries and our air fryer that cooks them in minutes. 😍) These days she’s still refusing most food with her... Continue Reading →
I don’t know what it’s like to raise a “normal” kid but, gosh, sometimes it seems like something should be so simple but it’s really really not. In Estonia, the symbol of motherhood is a stroller (preferably a good stroller of the right brand or color) you use every single day — rain or shine... Continue Reading →
Back in December, when seizures were still new to us, I remember a phone call I had with our doctor in Tallinn at the time. "How's Eloise's seizures?" "Well, she's having anywhere between 5-8 per day." "Okay. Well, contact me if it gets worse." I remember feeling stunned. But, Tartu? "I want you to contact me every time Eloise has a seizure." "Wait. Every time? I'll be writing you a lot." "Yes, every time. I don't mind." And that interaction basically sums up how different the care feels in Tartu versus Tallinn.
Almost exactly one year ago, on Good Friday, I finally announced Eloise's birth to the world. It was a teary letter. It seems fitting to re-visit that post a year later because, though we're in a quite different place now than we were then, it is still so prophetic in many ways.
Sometime during my years growing from a child into an adult, I internalized the idea that I was never doing enough. Besides that -- I decided back then -- whatever I did do was never good enough. If I had a school project, it couldn't just be "good enough," it needed to be over-the-top amazing.... Continue Reading →
I feel like this video sums up the spirit of Eloise's week well. Eat food? Nope. 🤔 Eat bath book? YES!!!! 😃 Sigh. Teething babies.🤷🏾♀️
It's so easy for the current reality of Ukraine's destruction to quickly fade from thoughts. The world moves on. And though we are determined to be as present and as joy-filled as we can for this precious girl of ours, lives are still being lost every day in Ukraine. So we still look for ways... Continue Reading →
Russia (okay, well, Putin) still bombards Ukraine every day. And we still have a kiddo who needs our full attention. So we move on with life -- with teething, with trying to get her to nap, with doing everything in our power to make sure she's growing and developing. We're privileged to be in a place right now that we can do that, so we will. Because life will not always be this peace-filled for us. In the meantime, we'll just hope that the Estonian military experts are correct -- that Russia isn't strong enough to take Kyiv.
All over the Western world we're experiencing a bit of collective grief. It's sad and weird and all kinds of things living in the middle of a country being invaded to the south of us. But life must go on. And, it feels weird to say it, but this week has been a breath of fresh air for us -- when it comes to Eloise.
It had been a tough few weeks and Eloise was finally napping, so Brian and I were scurrying around the house to do a quick cleanup. As I was loading the dishwasher, Brian paused what he was doing, looked at me, and casually threw out a question. "What is our own trigger point? When would we consider fleeing Estonia if Russia invaded?"
This has been one heckuva week for all 3 of us. Apparently the stress of feeling like we’re constantly fighting — to get Eloise to eat, to get Eloise to nap, to get Eloise’s pain under control — has been taking a toll on us. Add on the fact that her seizures returned for 24 hours and for a minute there we were convinced we were gonna go back to the hospital and 😢. Yeah. It’s not been our best moments.
Life with Eloise is an absolute and utter joy. Until it isn't. We will find a way to take care of this kid and take care of ourselves and take care of our relationship. And we won't accept a life of merely existing in pain as an option. We will thrive while we do it. We're not there yet, but we've made a lot of progress. This is that progress. Part 2 of "Time to re-learn Teamwork".
This kid takes forever to grow a new tooth -- does anyone else have a kid who takes a month to grow one? But when we got such incredibly great news this week, it's hard to really complain.
We returned last night from our planned Tartu inpatient hospital stay. So. 👏 Much. 👏 Good. 👏 News. 👏 There's no way to easily explain it all in an instagram story or a tiny facebook post, so blogpost here we go!
Between Eloise's tooth still coming in and her practicing all kinds of new skills, we have been so encouraged this week. Yet like most parents, we've still been pretty worn out by all of her crying and not sleeping. Thankfully, though, her fussy period shouldn't last much longer. At least we hope. 🤞🏾🤞🏾🤞🏾
Eloise The Tiny Fighter 