Weekly review: Week ending March 4, 2016

Second week of life with a baby. We did a field test of baby wearing and the camera backpack we’d converted into a diaper bag. We made it out to Dufferin Mall, changed the baby’s diaper, nursed in the nursing station, and even picked up a few supplies. Slowly gaining confidence and competence, hooray!

We started cloth diapering this week, too. So far, so good! We’ll still probably use disposable diapers at night and when we’re out, but it’s good to get the rhythm of laundry and diapering going.

I’ve been getting lots of practice in holding the fort. Actually, things are pretty manageable. I still haven’t made it out to the supermarket or the library on my own. With the way things are, though, it’s better to take it easy and minimize risks.

Starting to learn more about the landscape ahead of us: met with the doctors at the Sick Kids Eye Clinic to learn more about microphthalmia, and met with the pediatric cardiologist to follow up on the murmur.

We picked a name for her, yay! She’ll hereafter be known on this blog as A-. Hello world!

2016-03-06a Week ending 2016-03-04 -- index card #journal #weekly output

Blog posts

Sketches

Focus areas and time review

  • Business (6.7h – 4%)
    • Earn (0.0h – 0% of Business)
      • ☑ Prepare invoice
    • Build (6.4h – 94% of Business)
      • Drawing (3.6h)
      • Paperwork (1.9h)
    • Connect (0.4h – 5% of Business)
  • Relationships (6.7h – 3%)
    • ☑ Update family
    • ☑ Build data analysis tool for baby connect data
    • ☑ Easily dump CSV for baby connect data
    • ☑ Draft name announcement
    • ☑ Write about micropthalmia
  • Discretionary – Productive (6.4h – 3%)
    • Emacs (0.0h – 0% of all)
    • Sewing (0.3h)
    • Writing (5.8h)
    • ☑ Consider dentist change
    • ☑ Switch phone to personal credit card
    • ☑ Check out Telegram bot API
  • Discretionary – Play (1.7h – 1%)
  • Personal routines (16.6h – 9%)
  • Unpaid work (78.5h – 46%)
  • Sleep (51.4h – 30% – average of 7.3 per day)

Monthly review: February 2016

All right! On to the next phase of this experiment: easing into parenting. We welcomed the newest member of our family this month, whee! Now for a crash course in learning all the skills needed to help a tiny human survive and thrive… It’s been an intense week and a half, but I’m slowly learning how to relax into it. W- is totally, totally awesome. It helps that he has been through this before and can remind me to not panic.

I’ve been able to squeeze in a little writing, coding, and sewing. Consulting is on hold for the near future, and all the things I used to do have been turned over to a wonderful and capable team. Emacs News and other community things are also on hold. I’m looking forward to resuming them when things settle down, but if anyone wants to volunteer, feel free.

Lots of learning ahead, which probably means lots of notes, sketches, and maybe even blog posts when I have the time to try to organize things into some semblance of coherence. =)

2016-03-03c February 2016 -- index card #monthly #review #journal

output

Blog posts

Sketches

Time

These time records are slightly out of whack, since I didn’t update them when I was Rather Preoccupied. I’m slowly getting the hang of my new tracking routines now that I want to track both myself and the baby (her diapers and feeding).

Category Period 1 % Period 2 % Diff h/wk Diff h/wk
Business – Build 0.2 0.8 0.5 1.2 0.9
Discretionary – Play 6.7 8.6 1.9 13.5 3.3
Unpaid work 9.5 17.9 8.4 28.1 14.1
Unpaid work – Childcare 0.0 3.8 3.8 6.0 6.5
Discretionary – Social 0.9 1.2 0.3 1.9 0.4
Discretionary – Family 6.4 2.5 -3.9 4.0 -6.5
Sleep 40.9 34.9 -6.0 54.8 -10.1
Business – Connect 0.8 0.7 -0.2 1.0 -0.3
Business – Earn 5.6 4.0 -1.6 6.2 -2.7
Discretionary – Productive 12.4 8.8 -3.6 13.9 -6.0
Personal 16.6 20.7 4.2 32.6 7.0

Notes on cloth diapering so far

Now that A-‘s umbilical cord stump has fallen off and things have settled down a little, it’s time to figure out the next step in my curriculum for surviving life with a newborn: cloth diapering. We’ve been thinking of going with cloth diapering as a way to reduce waste, save money, and have more flexibility, with disposable diapers for overnights or trips out.

2016-03-03b Notes on cloth diapers so far -- index card #parenting #diapers

2016-03-03b Notes on cloth diapers so far — index card #parenting #diapers

Over the course of several months, I had raided thrift stores for flannel sheets (two queen sheets at $6.99 each, one twin sheet at $5.99) to cut up into roughly 30″x30″ squares. I converted the remnants of the sheets into stacks of reusable wipes. I also picked up a number of flour sack towels. For comparison, I ordered some diaper flannel from the Internet. It’s a little denser and less nubby than the flannel sheets I picked up from thrift stores. Looks like the thrift store flannels are doing fine, though. I washed everything on hot to sanitize and shrink them before cutting the diapers, so the flats are actually mostly square. I sewed some one-size covers from the 1mil 72″ white PUL I ordered from Wazoodle, following the Little Green Bear tuckable diaper cover pattern.

The midwives also passed along some cloth diapering supplies donated by other families: small gPants and inserts, a couple of covers, and a stack of cotton prefolds. A- seems to be too big for the gPants. (Already?! She’s less than two weeks old! Maybe I’m not putting them on correctly… I’ll give them a try again before we wash and return them to the midwives.) As it turns out, I was putting the gPants on backwards. They fit, yay! We haven’t tried the prefolds yet.

We were a little worried about potentially poking her or us with safety pins, but it’s actually pretty manageable. I sharpened the pins on a whetstone, and we use a little coconut oil to lubricate it as well. Some of the flat diapers are more tightly-woven than others and require a bit more pressure, but keeping a hand between the diaper and her skin helps me feel more confident about pinning. The kite fold we started out with was a bit bulky in terms of both pinning and lying down. The happy anteater fold that W- found seems to be working wonderfully. There’s less fabric in the back, and it’s easy to pin in front – we’ve been getting by with one pin! I might still order those fancy diaper pins with locking heads when she’s more mobile and more curious, but in the meantime, things are working fine.

Laundry-wise, we’ve been doing a small load daily. It was a little ridiculous when it was just wipes, pads, baby clothes, but now that the diapers are in the rotation, it feels like less of a waste. Clothespins are great for increasing our effective line-drying density, especially for the small wipes.

It’s a good thing friends handed down larger baby clothes. In cloth diapers, A-‘s definitely out of newborn sizes! =) She can still fit into them if she’s wearing disposables or if we don’t snap the bottoms closed. She’s gaining weight nicely, though, so that won’t be true for long. I’ve ordered a few white bodysuits in a larger size, which should tide us over until we’re settled enough to check out thrift stores or fabric shops. =)

On a related note, it looks like knits are definitely the way to go for baby clothes, I think. She didn’t fit at all into the newborn kimono top I made (sleeves too small!), although some of the larger ones might still be okay. Now that she’s here, I can make things based on her proportions. (Well, eventually, when she’s less of a barnacle. =) ) Good thing I mostly focused on size-independent accessories such as wet bags and wipes!

Microphthalmia: small eye

The doctors at the Sick Kids Hospital Eye Clinic confirmed the diagnosis of microphthalmia (small eye) for our baby. Her left eye is less than half the size of a normal eye, and the lens is still milky-white instead of clear – a sign that it prematurely stopped developing. She’s unlikely to be able to see anything more than light or shadow in that eye, if at all. It’s too small to operate on, and there’s no way to restore vision in that eye.

2016-03-03a Microphthalmia - small eye -- index card #microphthalmia

Everything else (including her right eye) seems normal so far, so it might be isolated microphthalmia instead of part of a syndrome. We’ll be scheduled for a full pediatric check-up anyway, just in case. She’ll probably be able to see fine with her right eye.

Lots of people get by with monocular vision. She’ll need to be careful about keeping vision in her right eye, of course. She’ll probably be near-sighted in he right eye like W- and me, so glasses will offer some protection.

As her head grows, she’ll need to wear ocular prostheses to get the eye socket to be the right shape and size. She’ll go for her first fitting in a few months, when the risks for general anaesthesia are lower. An ocularist will make a mold and then create prostheses for her. That’ll help keep her face balanced as she develops.

She’ll make an awesome pirate. Or cyborg. Or cyborg pirate. If she wants. Whatever life throws at us, we’ll just have to make the most of it. We’ll learn as much as we can, connect with other families figuring out similar challenges, and work on giving her a great start in life.

Here are some resources I found helpful for learning more about microphthalmia and anopthalmia (a related condition where the whole eye has not developed):

Treatment (anopthalmia.org): describes the process of expanding the eye sockets through prosthesis and tips for early intervention (ex: orientation and mobility training).

A practical guide to the management of anophthalmia and microphthalmia (nature.com): Related systems to examine, pictures to show the effects of prostheses, a detailed description of ocular prosthesis, and long-term management

A letter to new parents living with microphthalmia (wonderbaby.org): An article from someone with bilateral microphthalmia whose right eye developed enough to have usable vision, emphasizing the importance of constant stimulation, parental attitude, and Braille even for people with partial vision.

Facts about anophthalmia and microphthalmia (nih.gov): describes prostheses needed until the age of 10.

Anophthalmia and microphthalmia (biomedcentral.com): Orphanet Journal of Rare Diseases article that covers related genes, diagnostic methods, and management

Ocularists (anophthalmia.org): What an ocularist does and what to expect

Assistive Device Program (health.gov.on.ca): Ontario program that pays up to 75% of the cost of equipment, including ocular prostheses; policy manual. The rest may be partially covered by insurance (through W-‘s work or my PHSP), or we can claim part of it as a medical tax credit.

IamA 15 year old male(in high school) that lives with an artificial(fake) right eye due to Microphthalmia since birth AMA! (reddit.com): What it’s like for a teenager

Sometimes I feel a little intimidated. Will we be able to effectively identify and advocate for whatever could help her? What will it be like helping her get the hang of caring for her prostheses? Can we give her enough of a solid emotional foundation so that she can weather the challenges ahead? But maybe this obstacle will become one of the ways we contribute to the world. W- has been wonderfully supportive. There will probably be rough patches, but we can get through this together.

We’ll learn more over the next few months and in the years ahead. I’m working on getting a referral to the Canadian National Institute for the Blind so that we can tap into resources for kids with vision impairments. In the meantime, there are all the usual things to learn about life with a newborn, too. Onward.

Weekly review: Week ending February 26, 2016

My time records this week are all out of whack. I was away from phone, computer, and paper for a few days. For an awesome reason, though! =) The next few weeks will probably be a crash course on the practical aspects of keeping a human being alive and thriving. There’s only so much you can learn from books, websites, and videos, after all.

I’m going to try to keep that daily journal habit going, as well as the occasional braindump. I don’t want to post too many details (the eternal memory of search engines!), but I’m looking forward to finding a good balance so that I can continue to think and learn out loud as we start on this new adventure. Here we go!

2016-02-29b Week ending 2016-02-26 -- index card #journal #weekly

output

Blog posts

Sketches

Focus areas and time review

  • Business (7.3h – 4%)
    • Earn (0.0h – 0% of Business)
    • Build (7.2h – 99% of Business)
      • Drawing (3.9h)
      • Paperwork (1.2h)
        • ☑ Plan payroll for 2016
    • Connect (0.1h – 0% of Business)
  • Relationships (5.0h – 2%)
    • ☑ Update family
  • Discretionary – Productive (2.3h – 1%)
    • Emacs (0.2h – 0% of all)
    • Sewing (0.0h)
    • Writing (2.1h)
      • ☑ Braindump and process things that have happened
    • ☑ Make a mini-app for NPM today view
    • ☑ Plan a simple tracking interface
    • ☑ Build data analysis tool for baby data
    • ☑ Easily dump CSV for baby data
    • ☑ Consider dentist change
  • Discretionary – Play (4.4h – 2%)
  • Personal routines (48.3h – 28%)
  • Unpaid work (57.8h – 34%)
  • Sleep (43.0h – 25% – average of 6.1 per day)

Emacs News on hiatus

Hey folks! Just a heads-up to let you know that I might not be able to get Emacs News out in a weekly manner for the next little while. If you feel like giving it a try yourself, you might be able to tweak these Emacs News-related code snippets to work for you, and I’ll happily repost or set you up with mailing list access.

Looking forward to getting this sorted out again when things settle down!