I’m writing the following as a peek into my real life and what it’s like to go to appointments every day with the boys’ G-tubes and reflux.
Today I had an appointment for Jaxon downtown at 11am. I always have to work back from whatever appointment time we have to figure out when to run their 2hr tube feeds, leave the house etc. So I needed to leave at 9:30am for this one, at the latest (1 hr driving, 30 mins for finding parking/unloading stroller/etc).
That means I needed to run their morning feed from 6:30am-8:30am (then give them 45 mins to “rest” to avoid puking). That would leave about 15 mins to change them (puke clothes), load the car etc (it always takes longer than this 😂).
They were still sleeping at 6:30 so I hooked up the tube feed. I wanted to go back to bed for 30 mins or so. But Jaxon woke up at 6:45am vomiting (as expected) and continued to vomit up the whole feed until 8:30am. I honestly feel like I shouldn’t even feed him but then I feel too awful not feeding him because obviously he needs the fluid/calories and I don’t want to “starve” him (although puking means he didn’t much of it anyway soooo…).
While I was busy with J, Axel was awake and playing with the G-tube and managed to open the med port. Tubie parents know where this is going. 🤦🏼♀️ None of the feed actually went into him, instead it just shot out the med port. So imagine dumping 200ml of liquid square over your baby’s chest. I had to literally peel his sleeper and sleep sack off and the bed under and everything was soaked (plus no food intake for him).
And yet, people I know tell me that my twins’ G-tubes “are so convenient!” Really. Really?! Do they seem that fuckin’ convenient to you, dumbass?! 🙄
So I changed them both though they still smelled like sour milk and vomit, and then had to pump for an hour before leaving. And pack the tube feed bags, milk, my pump +more. So I actually left the house at 10:10am. Ugh.
Surprisingly, traffic was decent and I made it there by 10:55am, however there was no parking anywhere near the main hospital. Seriously, who designs the only Children’s Hospital in the entire province and then doesn’t make enough parking. Anyway, I had to park about a 15 minute walk away. Ah!
So I was about 20 minutes late in total (I ran lol), which was pretty decent considering I had to unpack the boys from their carseats, and my 5 bags: diaper bag, pump bag, 2 feeding pump bags and cooler bag with their milk, G-tube bags, extensions and water to flush the lines. (BTW the Mountain Buggy Duet basket underneath is really spacious for all this gear, although I wear my diaper bag backpack as it won’t fit with all the other stuff.)
I HATE being late to appointments. It always brings back that slinky, want-to-fade-into-the-wall feeling from high school when you know you did something wrong, right? At least for me. Ick. They were very nice to still see me for the appointment.
The actual appointment was a hearing test for Jaxon, his 4th now. My mom came with me to watch Axel because no one else is allowed in the sound booth while they’re doing the test. My mom is legally blind so it is hard for her to watch Axel, but he can’t get into much trouble in the stroller (besides puking all over himself).
The result was the same as the last test and took about 20 minutes. All this running around and hours of planning for a 20 minute appointment. But, it’s important. He does not have good enough head control to reliably do the hearing test. Normally they would play sounds and a baby will turn his head to look for them, but Jaxon cannot easily turn to the right, so it would be unclear for the test if he a) couldn’t hear it, or b) just couldn’t move his head well enough to respond to the noise. And also, because he can’t see the visual cues for where to look for sounds (he is blind), it is inconclusive.
At worst, he has mild hearing loss at lower volumes and higher pitches. This is great news because it means he can definitely hear normal speech volume and tones, which is what is needed for general daily life as a hearing person. So, yay! It is also not certain that he has mild loss, the test is just inconclusive. Either way, I am very happy with this result!
The part that really ground my gears is now, because he can’t be tested traditionally, we have to do a 3 hour sedated procedure at another time. He will be put under and they’ll measure like how his brain hears sound or something. I don’t really know. The good news is that it will give a definite yes or no answer about his hearing, concrete proof, and will determine if he needs hearing aids or not.
If he does need hearing aids, it’s important he gets them to help him learn the best he can. Since he cannot see, he really needs his other senses to be maximized as much as possible to help him out. So I definitely want him to get those if he needs them. Without doing the sedated test, there will be no way of knowing and no way to get him these aids if he needs them.
The bad part of all of this is… he was just sedated last week for his head MRI! And could have had this test easily done at the same time!! Now, we have to come back, hold him down for another IV and traumatic hospital experience (well, he’s too young to remember but it SUCKS) when this all could have been done together. ARGH. Like what, do I want my baby sedated every week and pumped full of drugs all the time? NO!
That really annoys me because if these departments WITHIN THE SAME HOSPITAL would just talk to each other, this second procedure (and Jaxon’s discomfort and lost time off work etc) could have been avoided.
Overall, I’m glad that whatever hearing loss he may have is mild, if anything. The reason he might have hearing loss is that preemies are at a higher risk for it, but also because of his bilateral grade 4 brain bleeds. Basically – his brain is damaged in several areas in several different ways. Almost as bad as it could have been. Several of his brain damage conditions on their own had 50/50 fatality rates. He had hydrops at birth which is associated with a 60-90% mortality rate on its own. He also had an acute liver injury and acidosis, which for 1/3 of babies is fatal (and causes permanent brain damage on its own, besides his hydrocephalus, bilateral grade 4 hemmoraghes, encephalomalacia, and PVL).
SO BASICALLY… Jaxon should not be here today. He has quad cerebral palsy. He is blind. Those are highly correlated with his levels of extreme brain damage. He will most likely have a cognitive disability and be unable to care for himself (which is a whole other topic for my worried heart one day). BUT. He smiles and laughs, he listens to everything around him, he can HEAR, he is beginning to babble and make appropriate speech sounds so he will likely talk one day, and he remembers things, evident of cognitive function, as he smiles when he hears his favourite songs and toys, and becomes familiar with routines and objects quickly.
He’s a freakin’ miracle. I could go on.
But I digress! This post was supposed to be about how hard it is going to appointments. And it is.
So after this 20 minute appointment, I needed to feed the boys and pump. That required changing their bums, hooking up their tubes, and running the feed pumps through the stroller. All in all that takes a good 20-30 minutes to get set up. Then those feeds run over 1 hour 30 minutes. I must leave them upright (in the stroller) for 45 minutes afterwards at least, otherwise they’ll puke up the whole thing. Often, they will puke some of it anyway but more stays down if I let them “rest”. Although I hate that they’re cooped up in chairs or the stroller so much of the day, because by the time all of this is done, it is time to feed them again after another hour. I HATE IT.
Jaxon is usually content to hang out in the stroller, but Axel is becoming increasingly difficult to contain for long periods of time. Poor thing is bored, even with toys, talking, walking around… he wants to get OUT, but I know if I move him, he’ll vomit his entire feed. It’s so hard.
I walked around the hospital for the 45 minutes until we could leave (without them puking). Although near the end both of them puked so I had to change their clothes (another 20 minute detour), then walk across to my car, load them in including hoisting in my 40lb stroller in the back of a Jeep on 33s (aka SWEATY lol). And finally, drive home… in rush hour.
So all in, a 20 minute appointment takes the entire day to do, as I got home right at 4pm, a sweaty mess. (Time to feed them again.) It also costs $15 for parking and probably about $20 in gas.
I AM TIRED. And this happens daily. There is the odd day off here and there with no appointments, but it’s usually 4-5 days a week.
But I need to do a better job of reminding myself that things get better… All day I was in a foul mood. Hauling heavy bags, babies, stroller, puke, screaming around for hours on end while also sweating through your t-shirt and being hungry AF will do that to you. But I was cranky, snappy, unhappy. Now as I’m writing this, the boys are in bed, I’m about to pump and go to bed (to align with their night feed finishing up), Perry is snuggled up to me on the couch, and I’m drinking a Guinness. So, it’s not that bad. But it sure feels stressful, depressing, crazy, sad and anger-inducing when you’re in the thick of it on appointment days…
Any other SN moms out there have appointment day hacks for me? lol.