Blogging the life of a little girl with a rare chromosome 2q24.3q32.1 deletion
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.
I’ve been working on this post about hope for many weeks, sorting through my feelings. At first, when Eloise was born, I felt sure she’d be okay. But then we got the diagnosis and our worlds fell apart. I stopped hoping for a long while. Yet that whisper of hope has been creeping back in. But so has another voice, which might even be better in the end.
Week 23 was not full of the breakthroughs I expected. In fact, we had some pretty big setbacks. But it wasn't all bad.
What does feeding difficulties mean? I had no idea until we had our own little baby with "feeding difficulties" due to her chromosome microdeletion.
I’ve been realizing that everything I do with Eloise comes with a cost. If I’m rocking one thing, I’m failing at three others.
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 →
KNOWING VS NOT KNOWING One Mom of a 17-year-old boy who has the same deletion as Eloise recently said, “Wow, reading your birth announcement made me realize how much more information you have at this point than we did years ago. Back then there was almost no information out there. I’m not sure if I would... 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 →
This is not your normal birth announcement. It’s because our first baby, after 13 years of hoping, will never ever be “normal.” Because she’s missing 19 million base lines of DNA
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 →
Originally posted on facebook in 2021, a few weeks after we got Eloise's diagnosis. Brian and I’s genetic test results came back. Neither of us are carriers of any sort of transmuted or mosaic or damaged or missing genes. We are, somehow, completely normal -- genetically speaking, at least. We were both shocked. We were... 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 →
Picture of a freshly-showered, hope-filled Mallory from earlier today. And a cute baby Eloise who had a wonderful, fairly calm and happy morning. Because we had no idea what was to come. Maybe we were in denial, but we never expected this.
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.
Somehow, just seeing Eloise in this way too big outfit feels like a perfect visual analogy for where we're at.
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.
Years ago, right before we moved to Estonia, I became an aunt for the first time. When Brian was growing up, his favorite toy was a little stuffed penguin he called "Pengie." I decided my new little niece, Mia, needed a stuffed penguin of her own from her Uncle Brian and Aunt Marsh-mallow.
It's Friday, February 5th. And it looks like no one will be coming home today.
We brought our camera with us to the hospital. I had dreamed of weary photos of me holding Eloise, exhausted from labor, of Brian bending down next to me laying in the hospital bed, the nurse taking our first out-of-focus photos as a family. But that's not what happened.
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 