Tag: feeding difficulties

35 Weeks: This was a rough one

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.

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Control is an illusion

She's mostly not eating. Again. These last few days, increasingly it's felt like we've moved backwards in time to a few months ago when it was a constant struggle to get her to eat. When we needed to try every trick in the book to coax her to get close to enough milk in her... Continue Reading →

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34 Weeks: The big solution

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.

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33 Weeks: A real life telenovela

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 →

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31 weeks: Where has baseline gone?

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.

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27 Weeks: What a weird time

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 →

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26 Weeks: So many Roses

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 →

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A solid start to 6 months

Last night, before I went in to feed Eloise for the final time of the day, I peeked in at Brian who was sitting in our office on the couch. With this current diet, things you normally celebrate with —like cakes — are out of the question. So I’d set my mind on the idea... Continue Reading →

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A big change in our lives

"Your job is to find the biggest, most important problems. And solve them." I'm Brian. Eloise's dad. I work as a product manager at a pretty great company. I often get asked what that actually means and, to be fair, I didn't have a clue until I started working at my last company that had... Continue Reading →

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Mom guilt 24/7

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.

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Week 13: She is in so much less pain

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 →

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Week 11: Wonderful and weird

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 →

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Week 7: What does hope look like?

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 →

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Week 5: Pumping is not for the weak

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.

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Week 3: Our first week all together

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.

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