Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
I've been kinda freaking out. In the best way possible. I was fully preparing myself for a lifetime of Eloise struggling with food intolerances. Not only that, I was mentally making peace with the fact that not only would I also have to stay on a limited diet for quite some time as I continued... Continue Reading →
Brian here. I don't often write blogs, partially because I'm so impressed with Mallory's ability to communicate through them, and partially because I never really feel like what I have to say would be meaningful or useful to anyone. But I thought hey, I could give Mallory a bit of break so she could spend... Continue Reading →
At times, it feels like the “problems” never stop. We solve one problem, then another pops up that’s just as big. Or bigger. I guess that’s life with Eloise. No rest. Sigh.
It’s weeks like these that I am so enormously grateful that Brian is staying at home, too. Just last night as I was going to bed I looked over at him. “Brian, you staying at home with us has been a great decision.” “I completely agree. It was the right move.” Brian responded. “Can you imagine what it would be like if you were still working?” “It would be rough.” “I would not be okay mentally. I really wouldn’t. The amazing thing is that right now even in the midst of tough stuff, I actually feel like myself. I’m so grateful.”
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.
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.
Gosh this has been a week of extremes for us. Some massive victories and some frustrating setbacks. On the food front The great After last week’s post, a few people sent me to an Estonian website where you can order freshly prepared, puréed, and deep-frozen single ingredient organic baby food. It turns out that they... Continue Reading →
We’ve got a few new problems. But they are ones I’m glad to have.
I still cannot for the life of me imagine why anyone who doesn't have a newly diagnosed baby with some sort of chromosome abnormality would want to read these insanely boring weekly updates about our lives. I feel almost guilty writing it all up, but it's become a helpful exercise for me to reflect on what went well, and what we may need to focus on a bit more.
Eloise turned 7 months old yesterday. Sadly, though, this past week has been a rougher one for her. We seemed to have moved backwards a little on the pain front. The good news, though, is that we moved forwards in a few other pretty great areas. Eloise through the months. ❤️ Steps back: Food and... Continue Reading →
This last week, Brian and I just kept locking eyes, laughing and saying, "She is doing SO great!" Gosh it's been good for our souls. https://videopress.com/v/5DicIO1S?resizeToParent=true&preloadContent=metadata Brian has quickly noticed Eloise likes his beat-boxing. Those giggles -- we live for them. I have now seen that a number of kiddos with her deletion didn't laugh... Continue Reading →
One major reason I write -- and include way too many details -- is to crowdsource help. We need a village, which means you! Whether you're young or old, whether you've got a special needs kid or not, whether you've ever birthed a kid and raised one or not, you can help us. How can... Continue Reading →
This week has been an odd one. So many highs but also so many strange not-quite-lows. It was almost like a roller coaster of "OH MY GOSH THIS IS SO EXCITING!" to "Man this sucks -- I hope this is just temporary." This photo kinda sums up our week. I’m happy to be on a... Continue Reading →
A week after we got Eloise's diagnosis, a wise fellow named Jeff sent Brian and I a podcast suggestion: Awesomeology (GRATITUDE) with Neil Pasricha. (Yes, for all of my [Transfer]Wise colleagues, THAT Jeff.) I was still in shock and in a deep, dark hole of grief when he sent us that fateful message. But, at... Continue Reading →
ere's this week's update about not feeling like a caged bird, a few of the many dilemmas we go through every day where there is no playbook (that I know of), and what a day in the life of caring for Eloise looks like.
After setback after setback, I feel hesitant to say maybe the food situation is getting better. But. Maybe the food situation is getting better. At the very least, she had less pain episodes this week.
Week 23 was not full of the breakthroughs I expected. In fact, we had some pretty big setbacks. But it wasn't all bad.
The original post in late April of 2021 in her facebook group. In general, she's feeling so much better. I’m still shocked how much less pain she’s in (I’m guessing a combo of this elimination diet paired with “nursing”). Most feedings she still has maybe 5 minutes of crying and pain from reflux or gases,... Continue Reading →
Original post on Eloise's facebook group a little over a month after we found out about her diagnosis. I had a lot of dreams about what it would be like to be a mom. Out of them all, what I imagined most was the first year of our relationship. I pictured it far more than... Continue Reading →
This was original posted on facebook in 2021 around a month after we found out about her diagnosis. This week was both wonderful and weird At this second, most of the time I just feel like a normal mom. Eloise is literally breastfeeding 95% of the time she’s awake these days. (And, unlike her bottle... Continue Reading →
The original facebook post made a month after her original diagnosis in 2021. April 7, 2021 Doctors. Therapies. Hospitals. This is already our life. Like I mentioned, Tuesday last week was the orthopedic surgeon who gave us the good news of no hip dysplasia. Followed by a quick physiotherapy appointment. Then Wednesday we saw a doctor at a private... Continue Reading →
March 28, 2021 Originally posted on facebook in 2021 the same month we received Eloise's diagnosis. It's incredible what sleep will do. I've had almost 6 hours of sleep for 3 nights in a row. Thursday and Friday night, she surprised Brian and I and slept for 6 hours in a row. Saturday night she... Continue Reading →
March 20, 2021 This was originally published on facebook shortly after we received Eloise's diagnosis in 2021. So much to write. So little time. https://youtu.be/dPsNhKL27r4 This week, according to "wonder weeks" she should have given her first smile and tracked objects for short periods of time with her eyes.Smiles have not arrived yet, but apparently... Continue Reading →
This was written on facebook about a week after we got Eloise's original diagnosis. For Eloise, I’d always thought the formula looked like this: Hope = Eloise will be a healthy “normal” kid (or, well, let’s face, it, extraordinary is what I was imagining since she’s ours) But it just can’t look like that. I don’t... Continue Reading →
Saturday, March 6 2021 This was originally posted in Eloise's facebook group a month after she was born, and before we knew her diagnosis. I've been up since 3am with only 1 coffee. But it's going to be okay. We're going to be okay. Just when I thought I had it all figured out. Tuesday... Continue Reading →
No wonder I'd been feeling hopeless. "If only I didn't have to pump, everything would be okay." I added it all up. Between prep, pumping, labeling, and cleanup it’s been taking 65-70 hours a week for me (and Brian when he’s awake to help clean up) to pump. That's like working more than a fulltime job. And, until now, I still haven’t figured out how to effectively feed her at the same time as I pump, which means time pumping = time separated from her.
There might be TMI in here for those of you who have never breastfed. So I will label the sections so you can blush and skip that one.
It has been a whirlwind since Eloise finally arrived home. There is so much to update on. Learning how to make life work between Brian and I with almost no sleep. A fussy hungry baby. Our first visit to the specialist doctor. Pumping pumping pumping. And so much more.
It's Friday, February 5th. And it looks like no one will be coming home today.
Eloise was a name we chose while we w ere pregnant. It can mean either healthy or fighter/warrior. Since we've had so many scares, it seemed a fitting name -- a declaration that she would be healthy, and that whatever trials came her way, she'd fight her way out of them. We had no idea how much we'd need that name.
Eloise The Tiny Fighter 