A year of full-time Max.

One year ago today we finally brought Max home from the hospital – 185 days after he was born. Two days ago he turned 18 months old!

Max, one year ago.

.

Max, now!

I know parents the world over have been saying this forever, but - Where has the time gone!? It’s been an exciting and eventful year. It feels like a whole lot has been happening around here lately - let's see if we can break it down.

1. Crawling, crawling everywhere.

This kid does. not. stop. moving - and he's quick! Ever since he figured out how to crawl a month ago, Max hasn't taken a rest. He gets up in the morning and it's go, go, go. As with most kids his age, he is into everything. He wants to know how everything works and he must inspect it all. Did you know that the garbage can makes a great drum? The toilet seat is a fabulous percussion instrument? The curtains are great for a game of peekaboo? Light switches are fun to turn off?

No speck of dust or fluff goes unnoticed. I could sweep and mop five times and Max would find the one lone kitty-fur tumble weed roll out from under the couch. He’ll stop crawling every now and again and sit to inspect his hands for floor crumbs. He’ll look around to make sure no one is watching and then cautiously lick at the crumb between his fingers. I’ve stopped chasing him around to brush his hands off. I figure if he’s willing to nibble on something, I’m not about to stop him. A little floor crumb never hurt anyone.

In Max’s quest for exploration he has also begun to pull up on anything he can reach. It’s usually fueled by a burning desire to reach something with buttons (remotes), or fur (cats). However in his excitement to grab at the object of his desires he often forgets that he’s not steady enough on his feet to let go. We’ve cuddled away more than a few bumps and bruises. All a part of toddlerhood, I try to tell him.

2. A sip of this, a nibble of that

As we mentioned a few posts back, we’re planning to do a hunger-based wean to get Max eating and eventually tube-free. Max has reached a great weight (nearly 18lbs now!) and is healthy enough to make this method safe. In February we will both be home for the month and are planning to begin the wean then. If all goes well we should have an eating Max before winter’s end. While we’re pretty optimistic, it’s more than a little hard to picture Max eating, considering how little experience and interest he has with food. However lately he has been showing more interest and seems to be developing rudimentary skills for eating.

There have been a few things that seem to have helped pique Max’s interest in food and eating.

As I already mentioned, Max has entered that age where he’s interested in everything. He’s especially interested in the things that other people are doing, or using. He has a particular penchant for forks and spoons. But not just any fork or spoon – the one you’re using. I’ve taken to bringing two sets of cutlery to the table when we’re eating so I have something to finish my meal with when Max steals my fork or spoon. He’s also becoming increasingly interested in what we’re eating. We offer him samples of what’s on our plate and he will smoosh it around, toss some to the floor, offer us nibbles and sometimes he gingerly rubs the food across his lips, occasionally having a taste. He’s even figured out how to chew food at the front of his mouth before swallowing so he doesn’t gag. They’re all small steps on the journey to becoming an eater.

Even more challenging than getting Max to eat, has been getting him to drink. Because he doesn’t know how to suck it’s been difficult to find a drinking vessel that he can use by himself that he can get anything out of. He was certainly interested. He plays with stacking cups in the bathtub and loves to fill them up and bring them to his mouth, dumping it back like he’s taking a drink. Most of it dribbles back out, but he is swallowing some, and more importantly he thinks it’s a lot of fun. One day Max’s buddy came over for a play date and he had a fascinating, yellow cup. Max was totally taken with it and wouldn’t leave it alone. It had a soft spout without a valve that let liquid out just by chewing on it. We rushed out that night to get Max his very own. He hasn’t stopped using it since. He doesn’t drink a lot, quantity-wise, but he loves his cup, and the look of pride and accomplishment on his face when he takes a little sip just melts my heart.

The last thing that we think is helping Max’s interest toward food is the most exciting for us. Imagine, if you will, throwing up every single day. Sometimes you feel like you’re in a scene from the Exorcist and vomit shoots from your mouth and nose, and the acid leaves your throat raw and sore. Would you be terribly interested in eating? Yeah, me neither. Max was dealing with this every day. Wait…did she say, was?  When Max started crawling a month ago, something amazing happened. He stopped vomiting. Completely. Overnight. Now, I’m not sure you can fully appreciate the magnitude of this development until you’ve blown through 6 rolls of top-quality paper towels in the course of a week. Vomit ruled our lives. Our quality of life has improved substantially and we’re all pretty thrilled about it. I imagine eating has become much more appealing now that things aren’t always coming up.

We’re hoping all these things work together to make an as-smooth-as-possible weaning experience!

3. His name is Bob

If the hierarchy of importance in our home was determined by the order in which Max verbally named them, I’d be feeling pretty bummed. Of course, I know most babies utter a “dada” before they’ve developed the “m” sound required of the highly anticipated “mama” – that’s fair, I guess. But these other things?

Max’s first word was Dad.  Fair enough, Dad is AWESOME! You get a bump on your head, you go to Mum for a cuddle, but you want super awesome happy play time? Dad’s your man! Max loves his Daddy.

Meet our cats. Max is nuts over the cats. Sure, miss Kenya on the left there doesn’t want much to do with him, but Nin*Dja is Max’s buddy. He patiently tolerates all of Max’s pats, and tugs, and well intentioned love.

Kenya and Nin*Dja

“Cat” was Max’s second word.

For Max’s birthday he received this really great ‘Little People’ dump truck and driver. He went crazy for the driver. Even when most of his toys ended up on the ground, he would keep this little guy tight in his fist and take him everywhere. At the time he received this gift Max was babbling with a lot of “b” sounds. A few well timed “bob bob bob bob’s” while playing with the driver and we decided his name must be Bob. We started to refer to the toy by name and soon Max began to follow suit, asking for it when he couldn’t find him.

Meet Bob.

Max’s third word was “Bob”.

Max loves books. He has loads of books, and would usually rather sit flipping through books than play with toys. He has a particular fondness for texture books. He especially loves the pages with soft, fuzzy textures. In fact, he loves anything soft. He will nuzzle soft objects up to his nose and make the most adorable, soft squeal of delight. So cute. He has one texture book that comes most places with us. It’s a book of words and we read all the pages, but one page gets the most read-time. This page has a picture of a dog, and the dog has a soft patch of fur. Max loves this page.

Dog.

Soft dog!

“Dog” was Max’s third word.

I waited and waited for the elusive “mama” to surface. While I waited Max learned signs in addition to his three words. All done, more, again, wash hands, ball, diaper, shoes, up, were all added to his repertoire before I heard it. And then one night I went into the bedroom to console him back to sleep, and he stretched his arms out to me and said it. The best two syllables ever!

“Mama” was Max’s fourth word.

Recently Max had an assessment with a speech language pathologist. It’s all a part of the follow-up program for babies who are born sick or premature. She assessed his expressive language (what he communicates) and receptive language (what he understands) and we were quite happy with the results. Max’s expressive language is testing at a 15 month level (his adjusted age), and his receptive language is testing at an 18 month level (his actual age). This means that he’s finally caught up with one aspect of his development, so we’re pretty thrilled and very proud of him.

Helping with decorating.

And there you have it. We’ve been having a pretty eventful year, and as we gear up for the holidays we’re looking forward to bigger and better things for the year ahead!

Happy World Prematurity Awareness Day

From your friendly neighbourhood Preemie.

Lock up your outlets!

Max has been working on the fine art of crawling for a while now. When he's in his crib or on our bed he's all over the place, hands and knees motoring around. But he's been having trouble getting up on his knees while on the floor where there isn't as much traction. Today he mustered through the frustration of slipping around and got himself up and moving about. As the day wears on he's gotten better and better.

Because Max has gross motor delays we're even more excited by milestones like this one. He's about 4 months behind his corrected age in terms of gross motor skills. So, while he's 17 months old, and just about 14 months corrected, he's meeting gross motor milestones that most 9 or 10 month olds are hitting. He's getting there on his own time, just as he's been doing all along. We couldn't be happier with his progress and hard work.

He's pretty excited by his new found mobility too!

BOO!! My Thanksgiving and Halloween highlights.

I've been having a lot of fun lately! Mum says that even though it's getting cold and we have to spend a lot more time inside, that fall and winter are a lot of fun because there are lots of cool holidays to celebrate. Celebrating means having fun with family and lots of food. I might not get too excited about the food yet, but the family part is great! My Mum's Grandma - that makes her my Great Grandma (and she's super great!) - came to visit us from far away. It was great getting to see her, because the last time she came to visit I was still in the NICU and I don't remember too much of her visit. This time we got to play and it was so much fun. I even got a new toy!

Me and Mum waiting for dinner. Mum said it was delicious - I'll take her word for it.

This is me and Mum with my Great Grandma!

G-Grandma won't be here for Christmas, so she brought me Christmas early! Look at my new farm!

Taste testing the sheep while G-Grandma frees the rest of the farm from the packaging.

Okay Mum, enough with the pictures.

After Thanksgiving came Halloween. I'm told this might be confusing to our American friends and family, but that's the way it goes in Canada. This was my second Halloween, but this was my first one out in the big wide world, and therefore much more fun. I got to go visiting people, and I even went Trick or Treating with my cousins. That's where you yell at people's doors and they give you candy. I'm not sure why, but everyone was doing it. Everyone else was dressed up too, so I didn't feel out of place. What a relief!

I'm an aviator! I even have planes on my socks and my diaper - that makes me more official.

Me and Dad. I'm looking pretty important here.

Here I am with my big cousin Sophie...er...Minnie mouse. We're getting ready to go Trick or Treating!

Look at all my loot! Mum and Dad ate it all.

Except for this sucker. I got to inspect this for awhile.

I even had a taste!

That's Captain Max to you!

Hope you enjoyed checking out my holiday pictures! I can't wait for Christmas!

Fresh face, on the move.

It was back in May when I took the last photo for the blog banner. Max had just started sitting independently and was quite happy to sit on the couch like a big boy for a photo. I figured five months of growing called for an updated banner, so we took to the couch again for some new photos. Not only has Max gained a few inches, a few pounds, and a few curls, but he's also gained a few new moves. Let's just say Max doesn't like sitting still. He makes a rather handsome motion blur.

The old banner

Sitting is for shmucks!

Climbing is for kings!

The cats aren't in here!

We have lift off.

It's been a long time in the works, but we finally, officially have a puller-upper.

No such thing as a 'simple cold'.

It's been nearly 10 months since we've said goodbye to our days in the NICU. Long gone are the days of beeps and bells, pokes and prods, and the every day reminders that we have a baby that's not nop-notch in the health department. Our days don't look exactly like that of parents with typical babies, but for the most part it's pretty darn normal. So normal that it's easy for most people to forget that we have a baby that is medically fragile.

He's growing so big, and strong, and he's worlds away from the tiny, frail, sick baby he was in the NICU - surely he's healthy now and we don't need to be so "paranoid" about germs and his health. This is the sentiment we've begun to receive from people who aren't as close to our lives and understanding of Max's medical history. We continue to remind people that Max is more susceptible to illnesses and those illnesses can be much more serious for him. Yes, even something as simple as the common cold.

Saturday night marked our first trip to the ER with Max. He was having a fussy night, was not himself, and having what we thought was a reflux flare. I had to soothe him back to sleep a couple of times before I joined him in bed at midnight. Something was definitely amiss. He was tossing and turning, and his breathing was wheezy, and he gasped for breath when he cried. I called Rafael home from work and we headed to Children's Emergency. We spent close to three hours there, where Max got a generalized diagnosis of 'reactive airway disease episode'. He got a chest x-ray (which was the most uncomfortable looking thing ever), nebulized epinephrine, followed by salbutamol , and an oral dose of dexamethasone.  Once his breathing was back under control we were sent on our way with a second dose of dex and a prescription for a salbutamol puffer.

Not a fun way to spend a Saturday night.

 We woke up the next morning to a snotty, coughing baby. Ah...the common cold - and a very mild cold at that. We keep telling people that illnesses that would make you, or I, or your healthy kids grumpy, would likely send Max to the hospital. We were lucky to not have to test out that theory until now, and we're lucky it's just a cold. Already we've received flack from people (mostly unknowing coworkers and acquaintances of acquaintances) who know nothing of Max or his medical history who snicker at the overprotective parents taking their kid to the ER for a cold. You don't need to go to the hospital for the sniffles, ya know. We don't particularly enjoy having to defend our necessity for medical intervention to people who have no idea what it's like having a baby with a complicated medical history. But some people are lucky enough to never have to understand.

We'll always have to be a little more cautious, and illness are always going to carry a little more risk to Max than to a healthy kid. His immune system is not top notch and the damage to his lungs is not something that will ever go away. He will get stronger and healthier and more resilient with time, but for now we'll remain his cautious, over protective parents.

And so marks the beginning of cold, flu and RSV season.

Another Shoulda Woulda Birthday.

What's a Shoulda Woulda Birthday without cupcakes?

If Max had been born on his due date he would be one year old today. How time flies! This time last year Max was still in the NICU and we had no idea that we still had another three long months ahead of us before we crossed the finish line. Now we've been home together for nine months, and it feels like it's all happened in the blink of an eye.

Max was still pretty leery of food on his actual birthday in June, so we didn't offer him any cake (we feared coughing, gagging, and vomit spewing out of his nose in front of all his party guests); so I decided to make a batch of mini cupcakes to celebrate his shoulda woulda birthday. I mean, it's not like I even need a reason for cupcakes, but I was looking forward to seeing what Max might do with it.

As with the majority of his food, he mostly just played in it. I didn't catch it on camera, but he did eventually have a taste. He seemed pretty neutral about it. Perhaps one day he will share my fervor for cupcakes.



Since we've been home and getting out and about, people naturally stop and make conversation when you have a baby that's staring people down and excitedly yelling at them (in a completely friendly fashion of course). Whenever people would ask how old Max was, I'd choose one of two options:
 1) Tell them his actual age, and inevitably have to explain that he's so little because he's really like a baby three months younger and he was born early, and have a conversation much longer than I care to with a complete stranger.
2) Tell them his adjusted age, smile, and carry on my way.
 I usually went with option two.
Now that Max is one year adjusted, I can just say "He's one," and carry on. It's just one of those things you think about when you have a preemie.

I'm this many!

After our miserable July, August shaped up to be a pretty great month. Max's reflux is in check, he's keeping most of his food down and as a result he packed on more than a pound in a little over a month which takes him to a whopping 15lbs 12oz. After two months with essentially no gain, this is awesome! Sure, he's still little for a one year old, but he's growing on a nice curve and his doctors are happy with his progress. In another pound, or so, we'll all be embarking on a new adventure. A scary, exciting, hopefully game-changing adventure.

We 're forever grateful for the advances in medical science that not only have given us a living, thriving baby, but for the ability to have him home with us while being unable to eat. We're grateful for this little hunk of plastic, threaded through our baby's stomach, that allows us to nourish his body and help him to grow. But we're ready to move on. Max is ready to move on. He just doesn't know it yet.

Since Max was born and began to get tiny amounts of breast milk through a tube to his tummy, he's always been fed on a schedule. Because he's fed on a schedule, he's never been hungry. Without hunger, he has no motivation to eat. Sure, you and I can eat without being hungry. We can eat because we're bored, because we're sad, because we're happy, because we got a craving for something we saw on television; but we know how awesome food is, and we have long ago made the connection that food satisfies our hunger. Max hasn't been allowed to make this connection. He doesn't understand that this stuff I put on his high chair tray three or four times a day is meant to satisfy a feeling he's never had. Food serves no purpose for him, except as a flavourful plaything. So, to help him understand, we have to let him feel hunger.

Once Max reaches an acceptable weight, we are going to embark on a hunger-based weaning program. We will slowly be removing the number of meals he gets through his tube. Doing this will leave large gaps in his day between meals where he isn't being giving any calories, which will hopefully leave him feeling hungry. This new sensation will then hopefully awaken his hard-wired desire to eat. It's still in there somewhere, we just have to coax it out. Once Max starts to feed himself and pick up some of the slack, calorie-wise, we'll continue to reduce his tube feeds. While we're doing this we'll continue to keep him hydrated with his tube, and hopefully comfortable. We have to walk the fine balance between letting Max be so hungry that he becomes brave enough to eat, chew, swallow and go back for more, and letting him become so hungry that he starts to melt down and feel unwell.

Every fiber of my being, as a parent, says "feed your child!" It's going to be difficult to stand back and wait, watch, and let him figure this whole eating thing out. In preparation for the wean, we're allowing Max to have complete control over his meal times. We no longer try to feed him (not that he allows us anyway), and instead give him a wide variety of foods to touch, taste and explore. The push towards autonomy addresses the psychological aspect of the weaning process. Max needs to be in control of what's going in his mouth - much like anyone would want to be. He is becoming more comfortable and adventurous with food, and has become accustomed to at-the-table meal times being a part of his day. This will hopefully set the stage for a successful wean.

We're pretty nervous, and trying to be optimistic and realistic about the process. There are no promises that it will go smoothly, be easy, or happen without some tears (ours) - but we're very hopeful that by Max's second birthday, he'll be enjoying a giant cupcake with his name on it.

By request.

We've had some requests for some new photos around here. Of course, we're happy to oblige.
Enjoy!

Helping with dinner.

Max swimming laps in the big pool.

I think he had fun.

Max playing with his best bud Nikolai. The matching shorts were surprisingly not intentional.

Getting dried off after bath...nothing to see here!

Pretty proud of stealing Mum's necklace.

Max loves play time on the floor.

A little pickle...

...a little carrot. Yum!

Still making messes!

Two steps forward, one step back - not just a NICU adage.

I know, I know, it's been nearly a month since there has been any activity on the blog - but not because there hasn't been anything to say. As it so happens, July turned out to be a pretty miserable month around here.

We decided to transition Max to a blended diet - in other words, we were just throwing a finely calculated  mixture of breast milk and age appropriate foods into a blender, making a totally unappetizing (but healthy) slurry and delivering it via Max's g-tube. We had several reasons for wanting to do this, but among them we hoped that we could get a larger volume of food into him, offer more calories, and minimize his reflux related vomiting.

At first, it went really well. Max was tolerating a larger volume of food, he was getting nearly 200 extra calories every day, and he was hardly throwing up at all. It seemed like a win. In retrospect it seemed that it may have been too much change all at once for his system, and he experienced some...well, digestive issues.

It all snowballed into a major setback for Max. He was vomiting at least half of every meal. During the heatwave that we were experiencing at the time we were putting pedialyte into his tube between meals just to make sure he wasn't becoming dehydrated. After not gaining any weight for a month, he lost weight. The oral feedings, that had been going so well, stopped altogether. He was so uncomfortable that he refused to sit on the floor, crying as soon as he was put down to play. He was waking up in the middle of the night for the first time since December, crying with reflux pain. It was all around awful.

After unsuccessfully trying some dietary adjustments and remedies, we had to take a medicated route to get Max's system running normally again. We decided to return to the fortified breast milk and let his system recover. We seem to now have Max back to his baseline. He's regained the weight that he lost, he's no longer in pain, his reflux is manageable, and he's beginning to eat small amounts by mouth again. We may at some point, very slowly try to introduce blended foods again, but for now we're going to concentrate on getting food in Max's mouth, and making the most of August.

So, while we hunkered down, trying to survive July, we learned that steps backward aren't just for the NICU.

My summer fun!

I've been having a blast playing outside this summer. I'd been waiting all winter to bust outside and play, and boy was it worth the wait! I've been all over the place - to the zoo, the farmers' market, out to restaurants, playing in Vovo's backyard, to the park - I even went on a train! I never want winter to come back! Check out the fun I've been having...

Here I am in the tropical house at Assiniboine park with Mum and my Grandpa and Gramma who came all the way from Ontario to celebrate my birthday.

I'm enjoying some fine dining. Mmmm...the red block is the best!

I celebrated Canada's 144th birthday at the street festival. The flag was the best part!

I love the swing in Vovo's backyard.

Dad always finds my ticklish spots!

I'm off to another adventure in my new car seat. I have the best view out the back window!

Here I am testing out my new swimming pool. I convinced Mum to come along, just in case I got wobbly.

I'm definitely going to have to play in here some more - it's so much fun!

Here I am at the park for my cousin Latika's 1st birthday. She was supposed to be 2 months older than me - but I decided that just wouldn't do. 

Playing in the sun makes me kind of sleepy.

After a big meal I like to curl up with Mum and take a snooze. We stayed nice and cool in the shade.

Here I am heading over to the park's train station with Mum and my big cousin Sophie.

Here comes the train! The whistle was the best part.

I had a lot of fun on the train - we even saw two deer hiding in the trees! 

As you can see I've been a pretty busy guy. I've been keeping Mum and Dad busy too, but Mum says she's going to make a more "informative" entry soon. Boring! Doctor appointments have nothing on play time! Until next time...

Maximilian