Category_Medical Motherhood

A Day in the Life (and A Medical Update)

I wrote this two weeks ago and then forgot to post it… whooops! But, here’s a glimpse into a day in my life and a bit of info about the boys at the bottom.

Today was hard (and it’s only half over). It’s no secret twin mom life is hard (obviously), but add in their medical complexities and still-frequent barfing, it’s a challenge to do anything.

I don’t think a lot of people I know reeeeally understand what it’s like. Actually, no one does. Just like no one else understands anyone else’s reality and all that jazz. So, I figured I would write what a typical day looks like for me now that my husband is back at work and it’s just me and the boys (and the dog) all day, every day.

What every perfect Instagrammy morning looks like… not.

I don’t write this for pity or to show off how amazing I am, I write it for informational purposes. And also for those expecting/new twin moms who think you can’t do it on your own? You CAN! I was SO worried about my husband going back to work. SO SO SO worried. But, it’s fine. You survive, you live. Some days are tougher than others, but most of the time it’s okay. And trust me, if I can do it, ANYONE can… because before I had these guys, I’d only ever seen a baby like 3 times maybe? And held one once or twice?! Yeah, if someone this clueless about babies (I still am) can take care of two complex twins, YOU CAN TOO.

Anyway. On with it. Here’s a day in my life…

The Schedule

I had to take both boys to a routine pediatrician appointment this morning. That involves timing their feed, which takes an hour, just right so they can sit upright for 45 mins before we leave (Jaxon still puked tho), getting my giant ass (but wonderful) stroller loaded into my small ass SUV (my next one better be an actual military tank), and getting there reasonably on time (I was 3 minutes late. NOT BAD, FRIENDS!).

Remember in school all those math word problems? Like if a train is going to run over Johnny’s body and it’s 10km away and going 50km/hr, how long until Johnny is dead? Maybe they were less morbid questions.

Here is a twin mom math word problem for you:

You have an appointment at 10:30am. You need to wake up at 6:30am to get there on time, after going to bed at 2am, but your alarm is now reading 7:50am. What do you do?


How can I panic with a face like this in front of me?

So, that happened. Luckily our appointment today was a 10 minute drive from my house and not at the Children’s Hospital which is an hour drive away. Here’s how today went from a timeline point of view:

7:45am: Wake up late, haul ass outta bed and go get their bottles warming

7:55-8:20am: Get the boys up, change them, dress them, clean their G-tube sites, hook up their extension tubes (for the feeding), carry them downstairs, get them set up in their Rock n’ Plays for the feed (have to sit upright). I’m always amazed how long this takes.

8:30am-9:30am: their feed runs over an hour on the pump (was supposed to start at 8, whoops, bad mom moment). While this is running, I pump milk for an hour. I also try their bottles with them if they are interested/not crying.

9:30am-10am: Clusterfuck of loading car with stroller/seats, diaper bag, loading boys into their carseats, letting the dog out, hiding all plush items from the dog’s reach while we’re gone (he’s an anxious chewer!), and burning the F outta my driveway. Oh yeah and PUTTING ON PANTS. 👍🏽

10:33am (I was 3 mins late, yay) – 12:15pm: The appointment! Of course they cried the whole time, Jaxon puked everywhere and then shat (simultaneously), and it was hard to hear the doc over their fussing. And just more depressing developmental news of course (more on that below).

12:15-12:30pm: Me loading giant ass stroller and gear into car again, swearing because the stroller has to go in at JUST the right angle to fit in my SUV. Swearing the whole time as a car waits for my parking space, but in the centre of the lane so everyone behind him is honking. Do I care? No, I do not care. When you’re loading 2 babies into carseats and a just-right-angle stroller, one has ZERO FUCKS TO SPARE.

12:45-1:00pm: Get home, quickly unload everything (except that stroller which can stay in my car and get stolen for all the fucks I give right now – and yes my car gets broken into). Warm up bottles because feeding time was noon (EEK), do the same process as above to get them ready.

1pm-2pm: Their feed runs, they fuss and cry, eventually fall asleep for first nap of the day (gawd), I write this post as I pump. I stop to give their iron supplements in the middle of the feed (I’ve found they are less likely to barf when taking it on full-ish stomach?).

Look at this angel face! Ax Man the living emoji.

2pm-4pm: WHO KNOWS. The mystery of the rest of the day awaits. But in this time, I will need to pump again, do their physio and floor time since we haven’t done anything yet today on that (!!!), give my dog some snuggles otherwise he sulks for the rest of the night if neglected (he will join us on the floor for play time with his toys). Maybe do dishes (HAHA) or laundry (LOLLLL), count down the hours until my husband gets home, maybe eat a bagel.

Oh, also 2:01pm just now, doorbell rings as soon as boys fall asleep (OF COURSE). I look out and it was their medical supplies so I answered the door pumping. Cuz I don’t wanna go pickup 10 boxes of stuff at the post office. You can’t see much of my boobs when I’m pumping, just a lotta cleavage and my nips being pulled like 5ft away from my body. But still, sorry Purolator guy!

2:06pm: Just wrote the above paragraph and then the doorbell rang AGAIN. Seriously, I can’t make this shit up, people. But it was my husband’s Christmas present so I guess that’s okay. But, sorry ’bout the titties, Canada Post lady!

And my neighbour walking her dog… Guess everyone’s gonna see my tits today!

4pm-6pm: Their next feed is at 4pm, then around 6pm we bath them and start the bedtime routine.

Jaxon loves bedtime.

The Bedtime Routine

I cannot for the life of me figure out how to get the boys to nap except for when they pass out after not being able to physically stay awake anymore… Seriously, it’s the worst. I hold them, rock them, turn the lights off, get them comfy, put them in their Rock n’ Plays, put white noise on, I try everything… I don’t know!

I can’t put them in their cribs for naps because it’s always either before or just after a feed and they’ll spew the whole thing up if they lay flat… so I dunno.

If you have nap tips that don’t involve laying them flat (lol), please comment below!

BUT. Actual night time usually goes okay and I think this routine is why.

I call this routine The 5 Bs:

  • Bath
  • Butt cream
  • Bolus (feed running over the pump)… if you have a normal kid, you could call this “bottle” or “boob”
  • Book
  • Bed!

5:30-6pm: Somewhere in this time we bath them. They are usually melting down and crying by this time of day (probably because of the short/disorganized naps earlier?). The bath always relaxes them so that’s nice. They love bathtime! My husband does their baths usually as I have to pump around this time again.

The Mother I Would Have Been

6-6:30pm: Get them dressed in jammies, clean their G-tube sites and put the granulation tissue cream and gauze on (if needed), and then we read a book and I try and fit in some cuddles here. Often they are just screaming their faces off wanting to sleep (or reflux?), so sometimes we skip the book and cuddle and just go to bed. 🙁

6:30-7pm: Sometime in here carry them up to their cribs. I put them in their Nested Bean sleep sacks (LOVE THESE!) and turn on their light-up mobiles. They will often lay awake staring at their mobiles for 15-20 minutes. Other times they pass out right away. Sometimes a bit of fussing but not usually too bad at bedtime (famous last words!).

8pm-9:30pm: feed them again, in their sleep (just for calories). 1 hour feed time, 30 mins cleaning parts and prep. I pump again during this time.

12am-1:30am: feeding agaaaaain and pump time again. I go to bed at 2am. My husband does the 4-5:30am feed and then I get up for 7:30am ideally, although the boys are usually awake and fussing around 6:30-7am most days.

Other Crap I Need to Fit In

Being a parent of special needs kids also involves being pretty much a secretary.

I have to make and keep track of appointments, follow up with clinics to ensure we’re still on the list to be scheduled for appointments (and I feel like the nagging helps get us in sooner).

I need to take inventory and order medical supplies for both, including filling out a LOT of annoying paperwork. I tried to order Axel’s medical supplies but I need some form signed or something before I can (of course none of this is told to me in advance so now I’m going to run out of supplies soon before I can get more as the form also need to be processed and we all know how fast the government is, so I have to buy them for ridiculous prices OFF EBAY in the meantime… yes, really).

I also have to make phone calls, like calling Service Canada to keep checking on my maternity leave application as I haven’t been paid anything in 2 months and they don’t work on your file unless you call every week, which is really a dumb system.

Don’t get me wrong, I am VERY happy and LUCKY to be Canadian where most of our healthcare is covered (and where we get maternity leave!). However, disabled and special needs people fall through many gaps as we have paid out thousands of dollars already and will continue to pay thousands per year. So no, not EVERYONE in Canada has free health care. We could do a lot better of a job for people with disabilities, that’s for sure!

Finding time for all these calls during biz hours is difficult with fussy twins to say the least…

The Medical Update

OKAY. So a bit of a medical/development update on the boys.

Recently, we attended the Neonatal Follow-Up Clinic for their 4 month (corrected age) assessment. This is a physiotherapist (gross motor skills), occupational therapist (fine motor skills), nurse and pediatrician assessment of how they’re developing.

They were 7 months old at the time, but since they were born 3 months (13 weeks) premature, their milestones are judged based on their due date, making them only at a 4 month age. That’s how corrected age works. 🙂

Anyway, they’re not really at a 4 month old baby level… More like 2-3 months at the most. That is just crushing to hear as I try so hard with their physio exercises and playing with toys and just trying to do everything I can to help them develop. It has been hard sometimes, for example we didn’t do much tummy time until about a month ago as their G-tube sites had to heal first, so I’m sure that has delayed them in some of the physical stuff. (Now they are healed and we do lots of TT!)

Jaxon’s vision may also be an issue – he does not reliably track objects and often has “sunsetting eyes” still, a sign of intracranial pressure although he does not have pressure anymore with the shunt, but his eyes never went back to normal. I am not sure what’s up with that but we have to wait until February for answers at our next eye appointment.

Basically, Jaxon doesn’t visually track objects, both don’t roll or move to midline, and so many other “milestone things,” even the 2 month old baby ones. It’s like having two 15lb newborns. Neither of them has head control either.

Workin on some physio.

It’s now become apparent that they’ll develop at their own pace. This is because of their brain damage. They could develop a bit late and end up mostly fine (a small chance). Even though I’ve known since a few days after they were born that they’d have disabilities and things, it’s still hard to see that play out. It’s still too early to talk official diagnoses like CP or other things, but being this far delayed is obviously not a good sign. I held out hope this whole time that they could overcome EVERYTHING. That wasn’t realistic, but I held onto it anyway.

I’d be lying if I said I wasn’t jealous of pretty much everyone else I know (with developmentally typical children). I know that’s pointless and petty. Others have far worse off situations than ours, too. But it’s easier to focus on the ones who have far better situations, isn’t it, and dwell on that instead. Either way I know I shouldn’t spend my mental energy on jealousy or wishing things were different. Things just are. They exist.

We were told instead of relying on the boys doing X task by X month – like the typical milestones of rolling, sitting, being able to think, whatever – that we should instead not worry about the timeline of such events, but just enjoy forward progress when it happens. Easy to say, harder to do in practice.

Like every day of this journey so far, I wish I had a crystal ball to look into the future and see how things will be, but that doesn’t exist.

Perry helps with physio too.

At every appointment now, still 2-3 days a week for various specialists and doctors, we pretty much get bad news. We’re told of their high muscle tone, reminded again and again that it’ll likely turn into CP and they, especially Jaxon, probably won’t be able to walk. Or told other depressing things. Honestly a lot of it I forget by the time I get home because I’m so tired and focused on getting the boys home, driving, feeding, etc. I don’t really ask a lot of questions at appointments anymore. I don’t have energy to think of any, and would I want to know the answers anyway? Probably not.

From now on, I just try to do the best I can with physio and helping them develop… and working on my own inner feelings of jealousy and resentment (that this happened to my boys, not at them). One day at a time…!

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