Category Archives: parenting

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.

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!

Learning to become a parent

First things first: a big thank-you to my mom for all sorts of things that I’m beginning to understand now that I too am faced with the only-a-little-terrifying responsibility of getting a tiny human being safely launched. A big thank you to W-‘s mom for raising an amazing person, too. I can’t imagine doing something like this without W-‘s support and awesomeness.

2016-05-04d Parenting - things I'm learning -- index card #parenting

2016-05-04d Parenting – things I’m learning – index card #parenting

I was more than a little scared, going in. Before committing to this path, I followed Stoic advice and spent a lot of time contemplating and accepting the different ways things could go wrong. As it turns out, even though we have to help A- figure out how to deal with two congenital defects, it’s still much easier than it could have been. I’m alive. W-‘s alive. A-‘s alive. The rest is gravy.

The biggest revelation was seeing an even more wonderful side of W-. Watching him come up with funny songs and games (the goldfish must be seen to be understood; I hope I remember how amusing it was even when I’m much older!), knowing that I can count on him when I’m too tired to stay up with A-, being steadied by his reasoning… Priceless, especially during those difficult weeks when we had so much to figure out and before A- learned how to smile.

Man oh man. Public health in Canada. Our tax dollars hard at work. I’m still getting the hang of talking to all the different people, but every time I walk in and out of a specialist’s office without a bill, every time I can get the help A- needs without worrying how to fit it into our budget or long-term plans… Wow.

I’ve also come to appreciate the family-oriented social services that hadn’t been on my radar before, such as baby activities at the library and the neighbourhood Early Years Centre. It’s been awesome starting to plug into the community of fellow parents swapping tips, clothes, and other resources. I’m looking forward to learning even more.

I planned my 5-year experiment with an eye towards having the flexibility to focus on childcare if needed, and that has paid off wonderfully. Sleep disruption? No problem. I can sleep a little longer. Task interruptions? I’ve got systems to help me remember and automate, and we’ve simplified our life to make things easier. Uncertainty? I’ve been learning how to plan around questions. Learning how to learn, too.

There’ll be many more questions and uncertainties and challenges ahead, and many more smiles and laughs and epiphanies. So far, so good. I could get the hang of this.

Other parenting-related index cards

Planning for safety glasses

The pediatric ophthalmologist prescribed glasses for A- to help keep her right eye safe now that she’s more mobile, to protect the only vision she has. No grade, just polycarbonate lenses.

Many of the parents in the microphthalmia support group we’re in are fans of Miraflex glasses, which are flexible and pretty much toddler-proof. There are quite a few local shops that carry them. I’ll take A- in for a fitting when the weather warms up next week. It’s a bit pricey, but insurance will cover this one. We might need to pay for the next one out of pocket, but we can figure out how things are going then.

From other parents’ experiences, I expect that we’ll need to help A- get accustomed to wearing them. Some kids really don’t like wearing glasses, and other kids eventually get so used to them that they want to wear them all the time. A- will be influenced by the way we approach things, so it helps to think things through.

Because her lenses won’t have prescriptions in them, there’s no built-in benefit for her in terms of clearer vision. If we’re lucky, she’ll think of them as a way to imitate us, since W- and I both wear glasses. If I develop a matter-of-fact approach to cleaning and putting her glasses back on, she may accept it as just a thing we do, like how we hope to treat wearing her ocular prosthesis. And then of course, there’s letting her pick out her own frames when she gets a little older (plus maybe a few inexpensive ones as backups, depending on how things go). If we invest the time and energy to get her used to them now, she might accept them as part of her life before the boundary-testing of the toddler years.

One more thing to keep track of, plan for, and take care of, but that’s okay. We signed up for all of it. :)

Feeling better about developmental milestones

We’ve been tracking A-‘s progress using the Nipissing developmental milestones and assistance from a nurse and a home visitor through the Healthy Babies Healthy Children program.

Toronto Public Health had referred us to the program when we were concerned about how A- might be affected by multiple congenital abnormalities and their implications – in particular, monocular vision, and multiple exposures to general anesthesia because of all the diagnostics (which some research flagged as associated with a higher risk of learning difficulties).

In some areas in the US, monocular vision automatically qualifies children for early intervention services with therapists who can help with vision exercises or orientation and mobility training. Some parents have found them very helpful, and some have found their kids do fine without therapy. Here, the Canadian National Institute for the Blind assessed A-‘s vision and decided she does not require any services for now. It’s good news, although I feel that I might have to be vigilant so that I can catch potential issues even without having a specialist track her progress.

The Nipissing developmental screens cover general capabilities. I’m not sure what to watch out for in terms of vision, and the caseworkers at CNIB didn’t have any specific resources or tips for monocular vision aside from checking if she’s cutting corners or banging into things.

A- seems to be on track with most of her physical milestones, which is a relief. A- enjoys putting things into containers and taking them out again. If I give her a block, she’ll pass it from her left hand to her right hand, and then she’ll put it in the bin. (We can tidy up quite a lot of Duplo with this process!) And this week, she actually stacked blocks on top of other blocks with a bit of guidance and turn-taking – hooray! She’s still a little quiet and reserved in company, which is totally okay. Now that the holidays are over, I’ll take her to neighbourhood drop-in programs more often so that she can see other kids.

Our home visitor suggested working on language by labeling whatever she’s interested in with single words: “Book!” “Ball!” “Cat!” She also recommended helping A- slowly get used to independent play by letting her take the lead and sitting close by. We’ll try those tips over the next week or so.

Before having A-, I hadn’t spent a lot of time around small kids, so I find the tips and interaction modeling quite helpful. I imagine other people find parenting more intuitive, but I appreciate all the help I can get. I’m glad the City of Toronto has this program with all sorts of pamphlets and activities!

How can we prepare for W-‘s return to work?

The next shift in our household will be when W- returns to work in a little over a month. It’ll be just me and A- most of the day. What will change in our daily routines, and what do we want to do now to make that easier? I’ve been reading Reddit posts to get a sense of what to expect, what kinds of friction points might come up, and what helps. There are some things to watch out for, but I think it’ll be manageable.

  • I won’t be able to pass A- to him during the day. That means we should have leftovers or a quick meal ready for lunch, so I don’t have to try to cook something with A- underfoot. If there’s laundry to fold, we should probably take it upstairs the night before. A- will become more independent over time, so I’ll be able to do more and more things.
  • W- will need work lunches,too. We’ll free up some space in our chest freezer and go back to preparing individual portions. It might be good to prepare most of the week’s food as well, so that dinner is easier.
  • I might have to take A- to her medical appointments by myself. We can meet the cardiologist at North York instead of Scarborough. Going to the Sick Kids Hospital is a bit harder by myself (bringing gear, going to the bathroom, comforting A- when she needs to be sedated for an exam), so we might save W-‘s days off for that, or I can tough it out. We survived long-haul flights, and we can deal with this too.
  • W- can’t easily rescue us if we get sick or need a lift when we’re out and about, but that’s why I have a transportation budget. If necessary, I can call a cab. It probably needs to be a public taxi so that I can carry A- without a car seat – I’m not sure Uber qualifies for that exception.
  • We’ll keep nights flexible so that W- can work if he wants to or hang out with A- if he wants to. He can play with her while I do the evening routines. I’ll let W- decompress from work and settle in before passing her over.
  • I’ll try to get groceries and do other errands in the afternoon so that we can free up evening time. It’ll also be good to take A- to centres for socialization.
  • Weekends will be mostly the same as now, I think: laundry, cooking, cleanup, errands, play, and a bit of hobby time.
  • Many people find it difficult and isolating to go without adult conversation or external validation for long stretches. Based on my experience with hermit mode and with my 5-year experiment, I’ll probably be okay. Writing is a good opportunity to string words together and think about stuff, and I can do that during A-‘s nursing sessions and naps. My blog, my journal, consulting, and the Emacs community help with validation and a sense of accomplishment.
  • I have my own savings and I contribute to the household, so I don’t feel financially dependent. I can even invest for the long term.
  • It’s also good to make sure W- and I stay in sync even if we’re moving in different worlds. Cooking is an obvious touchpoint. Keeping up with tech helps me relate to his stories and interests, and observing A- will probably give me plenty of stories to share. I can use some of my late-night discretionary time to play video games with him, and I can read about woodworking and other DIY pursuits. Duplo would be good to explore, too – we can have fun with the build of the day. If I pay close attention, the minutiae of everyday life is actually quite fascinating, and I can share what I learn.

The next shift after this will probably be when A- starts walking around. I might need to keep a closer eye on her to make sure she doesn’t get into too much trouble, and we might also modify our routines so that she gets lots of practice. As she learns how to ask questions, we’ll add more field trips, too.

Okay. Let’s do this!