Two and a half months later

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

UPDATE JUNE 27:

Hey guys! Long time no update.

Charles has been doing well at home since the last update nearly two months ago. He’s quickly coming up on three months old. The time sure does fly!

Charlie has become the biggest smiley guy and is the chattiest little man I know — no small feat considering how much big brother likes to talk! He’s slowly but surely gaining a bit more neck strength and trunk control, however, when he’s tired he becomes very floppy. We’ve been spending lots of time on our tummy to help Charlie develop all those important muscles, and just last weekend he ROLLED OVER for the first time from his belly to his back. He’s done it several times since then too! This is huge for his development so we’re keeping our fingers crossed for more great things from him.

Charlie did give us a bit of a scare with some repetitive eye movements that were a bit concerning. We ended up back at Sick Kids thinking they could be seizures, so Charlie had an EEG. We saw the neurologist last week and they said that his EEG looked normal (yay! yay! yay!), and there was no signs of seizures during the EEG. However, without catching one of these episodes on the EEG, they cannot say for certain one way or another if the episodes are seizures or just a benign sleep thing. So we’re left to wait and see some more. If they become more frequent, last a long time, or he has issues with breathing during them then we are to call the neurology clinic to be seen ASAP. As it stands we continue on status quo with his medication and monitoring until he’s seen for follow-up in October.

We also got Charle’s neonatal development clinic appointment booked — so he’ll see them in September to track his physical development and milestones. The neurologist we saw last week has recommended getting Charlie into physiotherapy and occupational therapy, as there is stiffness and muscle issues already apparent. We are just waiting for when we see the paediatrician (next week) to get that referral set up for him. Charlie continues to love his baby massages from mama, and we notice marked improvement in overall muscle ‘calmness’ when he gets them on the regular.

Aside from rolling over, Charlie’s a huge fan of looking at himself in the mirror. (Because he’s so handsome, DUH!) He also loves to touch knitted blankets. His baby crinkle paper is his favourite toy — he loves putting it in his mouth and over his face (probably because it’s such a cool sound and sensation.) He’s slowly developing his skills with reaching for and grabbing things. He can’t quite get his body to move the way he wants it to, which causes some frustrated cries, but he keeps trying. He tracks us very well and still loves watching his big brother showing off for him.

Upcoming for Charles is a visit with the paediatrician, where he’ll get the second part of his first set of vaccines. With our doctor’s OK we’re vaccinating on a spaced out schedule so that it doesn’t overload his already fragile system. We start mom and baby music classes next week. Charlie really seems to love music (and it’s great for the brain) so we’re looking forward to it. It will also be nice to do some “normal” mom and baby things and not focus so much on the medical aspect of Charles’ care.

Physiotherapy visit #1

Charlie had his first physio session today. His therapist scored him between the 50th & 75th percentile. He’s doing almost everything he should be for a baby his age.

He’s got some left-side preference that we’ll be working over the next little bit, encouraging him to use his right hand and look at things to the right. We’ve been told to carry on doing what we’re doing and will see Adrienne again in a month.

All in all a great visit! Affirms even more what a miracle our little boy is!

One month later

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

UPDATE MAY 9:

Hello everyone. I’d meant to get this posted on Saturday in celebration of Charlie turning one month old, but I’m finding that having two littles in the house makes getting nearly anything done (especially writing things) next to impossible!

Charlie has been doing very well over the past month. I would say he’s fully acclimated to his meds now as he has himself a regular wake/sleep routine that is well within the limits of a neurotypical (NT) baby. We’re so lucky that he sleeps (mostly) through the night, only waking to eat once or twice. (Don’t worry, we paid our dues with Declan!) 

We saw his paediatrician for his first appointment last week. She is a nice lady and has told us the best thing we can do for him is to give him lots of tummy time in order to build his trunk and arm strength. Other than that she thinks he looks good and we don’t need to be doing anything else special for his development.

We also saw his family doctor last week as well just to check in. He really likes the look of Charlie and says that if he didn’t know his history, he would just consider him a regular old baby, given the way he presents. Although none of us have a crystal ball, he says that based on how Charles appears now, he will likely be able to walk unassisted as he gets older. This was a huge worry for us, so he’s given us much hope.

Charlie is doing all the NT baby things he should be doing. He’s lifting his head and looking around when on your chest/the floor and he is becoming quite vocal. He can kick his feet into the mattress to try to shimmy himself, and he’ll do it “standing” on mum & dad too. He’s just started smiling as well which is such a beautiful sight. Hitting all of these milestones on target bodes well for long-term success and we couldn’t be more excited and proud of our little man.

Our little tank is up to 11 pounds 8 ounces (at last count) and is in the 97th percentile for his height and weight. Declan grew the same. We make giants, apparently.

Charlie enjoys spending his days swinging, playing on his mat, being held constantly by mama/dada and listening to big brother sing to him. He’ll see the family doctor in a month’s time for his regular two month checkup and vaccines, and then the paediatrician again at 3 months of age. His follow up with the neurology department at Sick Kids is scheduled for August 9th, when he’ll also have a sleep-deprived EEG. His neonatal follow-up (which tracks milestone development), will be in early September.

Finding a rhythm

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

UPDATE APRIL 24:

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.

Homecoming

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

UPDATE APRIL 19:

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!)

UPDATE APRIL 15:

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. 

Continue reading