Finding a rhythm

From Charlie’s private Facebook page (yeah, he’s that cool!)


Hey guys! Now that we’ve been home with Charlie for a few days, we’ve found a routine and rhythm, and man oh man is it ever nice to be away from the hospital.

Luc has achieved expert level with giving Charlie his meds, and Charlie is getting really good at taking them without too much fuss. He gets his dose of phenobarb twice a day. Because of the drug, Charles sleeps a fair bit (which I’m sure other moms are cursing me for – but let me assure you, Declan more than made up for it!) I have to wake him throughout the day and night to get him to feed, but he’s not too upset about this, though it takes some effort some times. He is starting to wake on his own to eat, which is nice to see!

We’ve definitely noticed that Charles is adapting to the phenobarb, and he will have a couple of stretches throughout the day where he is awake and interactive for a couple of hours. It’s so lovely to see those big beautiful blue eyes looking up at you.

Charlie was 10lb7oz when the midwife came to weigh him on Thursday – nearly a whole pound more than what he weighed at birth. We should have another weight on him tomorrow, just to make sure he is gaining enough with the nursing schedule we’ve got him on.

He’s very good at lifting his head up now to take a look around. He loves looking at lights and the ceiling fan. And he’s starting to reach for things he wants. He’s also got the sweetest voice that lets you know when he is displeased with something or wants to be rolled off your chest and over onto his back. Overall he is a very happy, chill little dude.


From Charlie’s private Facebook page (yeah, he’s that cool!)


We are home!

Charlie got his walking papers around 130 this afternoon. He will have lots of follow up to ensure he’s on the best track.

As uncertain as our future is, it is so nice to be back home together as a family again. Declan is super excited to have baby home and wants to be a great helper.

Thank you for all your thoughts, prayers, and everything else during these past 10 days. Keep rooting for us.

Aftermath update 5

From Charlie’s private Facebook page (yeah, he’s that cool!)


Silly boy, got our hopes up a little too soon.

Overnight Charles had a seizure, his first since being admitted. The doctors think this is because we switched him from IV to oral phenobarbital, and it’s not metabolized the same way, so perhaps his levels got below where we want them. They’ve decided to put him back on a twice daily dose and will recheck his levels Sunday night to make sure we’re still within ideal range. This means no care by parent tonight, and no discharge until at least next week now. While we’re bummed he’s not coming home sooner, we’re glad that he’s getting the extra monitoring and care that he needs. 

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Aftermath update 3

From Charlie’s private Facebook page (yeah, he’s that cool!)


Sweet baby boy! This little man is a ROCK STAR.

All of Charle’s viral screening came back negative. This puzzled Doctor Doom & Gloom, who was the same one we had Monday, and who gave us the diagnosis of HIE. Little man is now on oral phenobarbital, which I learned how to give him tonight. This will be a once daily dose in the evenings until he outgrows it or the follow up clinic determines he’s no longer at risk for seizures and doesn’t need it anymore. He still hasn’t had a seizure since he was admitted on Saturday. 

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Aftermath update 2

From Charlie’s private Facebook page (yeah, he’s that cool!)


It was another big day for Charles today! (Amazing what 24 hours can do!)

Overnight Charles had several periods where he was quite irritable, which is what normal babies do, so his nurses were happy to see that. He had regular periods of sleep and wake cycling, and is continuing to poop – also good! When his nurse went over for one of his checks she discovered that he’d pulled out his oxygen cannulas and was holding his stats no problem, so Charlie is officially off of oxygen! He was able to handle all of his feeds last night AND the neuro team cleared him to be removed from CFM since they are no longer concerned about seizures or irregularities in his brain activity. Without the dose of phenobarb before bed yesterday, he was even more alert and active overnight and this morning. The doctors will test his levels around 5pm in order to determine what dosage to give him tonight. 

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Aftermath update 1

From Charlie’s private Facebook page (yeah, he’s that cool!)


Overnight Charles began waking up and opened his eyes (yay!) He aspirated some of some of his feeds, which is not uncommon since he had been so heavily sedated, the gag/swallow reflex will improve as he clears the meds from his system. He only started being given my breastmilk yesterday. He is responsive to pain. His eyes were tested for stimulus response and we should have those results tomorrow.

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The hospital

I cannot say enough wonderful things about the nurses at Sick Kids hospital. I cannot. Until my dying breath I will sing their praises.

When we arrived there was a team of about 15 people at the ready to care for my sweet boy. Doctors, cardiologists, neurologists, infectious disease specialists. There was also a team of 2 or 3 ladies who came to care for me as well. One of them explained to me who everyone was and what they were doing. Another made sure I had plenty of Kleenex and water. One more showed up later to take my older son to the play centre while my husband and I waited with our son and spoke to the doctors.

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