A day for new beginnings

December 6th is a pretty special day in our house. Two years ago today we finally welcomed our Mighty Max into our home for the very first time. 185 days lapsed between his birthday on June 4th and the day he arrived home. It was a bumpy ride, but we made it.

So much has happened in the two and half short years he's been in our lives, and this space has been where we've told our story. We began this blog as a way to keep our far away friends and family tuned in while we navigated the stressful first weeks of the NICU, but it grew into much more than that. It's been a space for us to reflect on all we've been through as family in that time; a way to remember all those foggy days, all the ups and downs, defeats and victories; it's helped connect us to people going through similar struggles, and helped us feel a little less alone.

This blog was a place to document the very mighty beginnings of a very mighty kid, but it's time to close this chapter, and retire this space. This part of Max's story - the preemie chapter - has all but come to a close. We've shed the days of preemie worries - lung disease, tube feeds, reflux, medications, and doctor visit, after doctor visit, after doctor visit. We've traded them in for typical toddler stuff - first haircuts, first family vacations, first steps, testing limits, making messes, new foods, new friends, new adventures.

As our family gets ready to grow by just one more and we embark on new adventures as a family of four, it seems appropriate to leave this space as one that tells the story of Max's very Mighty beginnings.

Thanks for sharing in it with us.

I'm two!

You may have heard - I turned two on June 4th! Here are a couple of pictures of my celebrations...

We had a picnic at the park, and Mum made me these
delicious train cookies. I think I ate 10 of them!

We watched the steam train wake up for the day from our picnic site.

I got this chair for my birthday - it was just my size!

Not to mention it was perfect for opening presents. I got some cool stuff!

This is me and Daddy riding the train through the park.
It was so much fun. I even saw a deer!

My family!

This is the awesome new tricycle that Mummy and Daddy
got me for my birthday. I can't reach the pedals yet,
but it's so fun to ride - I even have a bell!

Growing up

If you wonder why it's been quiet on the blog for the last few months it's because we've been chasing after a ball of pure energy. It's hard to believe that the tiny little preemie I once held in the palm of my hand has grown into this inquisitive, bright, thrill-seeking toddler. He is the sunshine to our days and we are having so much fun exploring with him, watching him learn, and seeing what the world looks like through the eyes of an almost-two-year-old.

Yes! Our little itty-bitty guy is two and half short weeks from turning two. I know, we're not sure where the time has gone either. But nevertheless, we're getting ready to celebrate another year of overcoming obstacles, reveling in successes, and looking forward to a bright new year.

Here's just a little of what Max has been up to lately...


Smaller bites!
When we last left you hanging here on the blog our lives were heavily revolved around eating. We've been through some up and down in the eating department since then, but we're coming out on top. After gaining back all of the weight he lost during the wean (only took him 10 days!), he had a period of rapid weight gain where he was gobbling up all of his high-calorie mush. Then the fickle toddler began to emerge and he started to lose interest, he started to get picky, he started to refuse foods, and he started to lose some of the weight he had gained. It was a little disheartening, but we chalked it up to him being a toddler, and a brand new eater. Even now we have days where we have to remind ourselves that he's only been eating for 3 months! Although he's still what you might call 'picky', his food repertoire has widened significantly - he loves crackers, chocolate, almond yogurt, bananas, cereal bars and PB and J sandwiches. His increasing willingness to try new things has found him enjoying oranges, pasta, soup, curry, vegetable tempura, and guacamole. It's safe to say he's got this eating thing in the bag.

Drinking is something we're still working on. His control with thin liquids is becoming much better, and his interest in drinking is piquing (he loves sharing my orange juice in the morning). However, he just isn't drinking enough to satisfy his hydration needs. We can't wean his tube fluids the same way we did his tube calories - you can safely go much longer without nutrients than you can without fluids. When we're confident that his drinking skills are up to the task we will trial him on one day of no tube fluids, which is as long as we can safely go. We'll take his lead, and it will happen when he's ready.

You brush your teeth
People seem to always comment on how many teeth Max has. We suppose it's because he appears much younger than he actually is (coming up on two, he's about the size of your average one year old). He has 14 teeth so far, and two more are working their way in. After that he only needs to teethe his way through his two year molars. Thankfully, he's been a pretty good teether. We've so far put off his first trip to the dentist for fear that his oral aversion and defensiveness might make it a terribly traumatic experience for him. Thankfully, his collection of toothbrushes (there are about 6 of them) is one of his favourite things, and he allows me to brush his teeth twice a day. Hopefully that will make his first dentist visit in the fall a little easier to tolerate.

Med-free!
Max has been on one medicine or another for one reason or another for most of his life. We're happy to say that he's now officially med-free! Life gets simpler all the time.

Another cold bites the dust
Two more, to be exact. After Max's visit to the ER back in September when he got his first cold, we've been a little anxious about him getting sick again. Although we weren't exactly excited about him getting sick, we were happy to make it through two more colds this spring (almost back to back) without a trip to the hospital. The first cold necessitated the use of his puffer to help out his breathing, but he handled the second (milder) cold all on his own. We're so proud of his lungs!

Occupational Therapy
We had been on a waiting list to get Max's therapy transfered over to home care, where he can work on his skills in a familiar and comfortable environment instead of in a clinical setting. We've been set up with a wonderful Occupational Therapist who's come to visit us at home three times now. To Max, he's just made a new friend and he has a blast playing (and flirting) with the OT.

Max is excelling in his fine motor skills, and the way he grasps and uses writing utensils is a step ahead of what most kids his age are doing. The kid loves his crayons! We're super proud of him, of course. Max is still working hard on his gross motor skills and we're getting closer and closer to having a walker. Right now he's a pro at cruising the furniture and riding all over the house on his car or bumble bee. He'll happily bust a move if you put on some music, and he's still a speed-demon when it comes to crawling. He is quite steady at standing independently, but he lacks the confidence to do so, and promptly sits down if he realizes he's standing on his own. He will speed walk around the house if you hold on to his hands, and I'm sure it's just a matter of time before he wants to bust out and go it alone. Like everything else - he'll do it when he's ready.

Moo, Neigh, Baa, Meow, Howwwwl
Max is beginning to try out many new sounds, and is making great strides to catch up with his expressive language skills. He doesn't have many recognizable words yet, but he is frequently trying out new words with their most prominent syllable. Bear, ball, bath, banana, are all different versions of "Baa". He's heading in the right direction! He has, however recently added various animal sounds to his vocabulary (and yes, according to speech therapists, animal sounds count as words). If you ever want to hear the cutest sound ever, ask Max what a horse says. Seriously, the kid is adorable.

Show me a sign
Max may not say a lot of words yet, but he has a fairly robust vocabulary. Since Max has been home we've been watching baby signing time dvd's during some of his long tube-feeding sessions to help pass the time. We've been incorporating the signs into our everyday life since before he was able to sign anything back to us. Now he knows around 75 different ASL signs, and regularly uses about 50 of them without any prompting. They aren't all perfectly formed, but they are clear enough that we can tell what he's signing. While we wait for him to develop his verbal skills it's incredibly helpful for us, and I'm sure empowering for him, to be able to communicate. It's wonderful to know that he wants a banana instead of crackers, that he's searching for his shoes, that he wants to brush his teeth, or what he's wildly pointing at is a dog. Signing with him is one of the most useful things we've done - and the beginnings of a second language never hurts.

Toddler beds, haircuts and other 'big boy' things
Max has been co-sleeping since he came home from the hospital. First in a bassinet next to our bed, and eventually snuggled up next to me in the 'big bed'. When we first came home it was essential for me to be close enough to hear if Max was in any distress at night. It's since become a thing of comfort for both of us. Because Rafael works overnight, Max and I enjoy stretching out in the queen sized bed. Max takes up an impressive amount of space for such a little guy! We enjoy sleeping together at night and have no real plans to give it up just yet. However, we are planning to transition his nap time to his own, soon-to-be big boy bed. Because he's used to sleeping in a bed, and not in a crib, we're going to convert his crib to a toddler bed for his birthday and start moving his nap time to his own room. It might seem like a small step, but it feels like a very big-boy milestone.

When Max was in the NICU he had a few pretty terrible haircuts. The worst of them about a month before he was released. He came home with one side of his head mostly bald. I couldn't wait for that bald patch to grow back in - and it seemed to take forever! Looking at him now, you'd never guess he was the recipient of a NICU haircut. His wild mane of curls has become fitting of his personality. We adore his crazy curls, and we are in no rush to give him his first haircut. And you thought I was going to say he got his first haircut, huh?

Most parents eagerly look forward to getting their toddler out of diapers and onto potty learning. We're no different, but I certainly didn't anticipate Max to take any interest in the bathroom at this point, while he's working so hard on other skills. I know he's not ready for formal potty learning just yet, but he's showing enough interest that he's going to be getting his very own potty for his birthday. He's begun to follow us to the bathroom, pointing and signing "potty". He points to the cats entering the litter box closet and signs "potty". He gets a kick out of sitting on the big potty for fun, and pretending to wipe, and flush, and wash hands - he gets the routine. And most importantly he's begun to tell us when he needs a diaper change by signing "diaper". It's pretty exciting seeing him become more and more self aware.


We're having so much fun with Max and we're marveling at how fast he's changing and growing. He's becoming this wonderful little boy right before our eyes. He's growing up.

Tube Weaning - Day 17

We've been basking in the glow of having a brand new eater. Max is doing so well, and we couldn't be more proud - and relieved. As much as we were very optimistic going into this experience, we always kept ourselves a little guarded, afraid to get our hopes too high.

Watching Max eat, and get excited about eating, is just magical. We're less than three weeks into this experience and already Max is taking all of his calories by mouth. He eats a well rounded breakfast, lunch and dinner, as well as snacks. He likes his crunchy snacks, but he still prefers his meals in mushy, spoonable form. He will eat some finger foods at meal times, but I think he likes the speed that the spoon offers him. I'm sure as his self feeding and chewing skills improve this will change as it would with any baby learning to eat. Thankfully I can mix anything together so long as peanut butter is present and he will eat it. So he's getting all of his food groups in a bowl at each meal time and scarfing them down. He is still not interested enough in drinking to keep him hydrated so he is getting water in his tube during meals, and breast milk before nap and bedtime.


We've stopped Max's daily weigh ins, as he was already beginning to gain back what he lost from the beginning of the wean. We'll weigh him periodically to see where he's at, but we can see with our eyes how well he is eating, and obviously thriving. He is so full of energy and seems so happy. A whole new world has opened up for him and he seems to love being a part of it.

It's amazing how freeing it is to not be held captive by his tube feeding schedule anymore. We can pack a meal for him and easily feed him without the hassle of tubes, syringes, and finding somewhere to hang his feeding bag. For the first time ever we were able to leave Max during his meal time and go on a dinner date. The only feeding supplies we had to leave were a bowl and spoon. It's all a very new, and very wonderful feeling for our little family.

We've been asked a few times now when Max's tube can come out. We still don't know, is the simple answer. First Max needs to start drinking enough to keep him hydrated. Then, generally we want to see him get through an illness while maintaining his eating and drinking. Most kids don't eat and drink as much when they are sick, but for tube fed kids it can sometimes set them back a little more, and we want to know that he can still take in enough to keep him healthy enough to fight off an illness. After he does those things then it's just a matter of when everyone is ready, and confident in that decision. We're in no rush, the physical tube is no hindrance to him or to us.

Max still has a little work to do, but for now, we're calling the wean a total success. We are so proud of Max and all his hard work.

Tube Weaning - Day 11

Today Max's oral intake rocketed to 3/4 of the calories he needs for the day. Most of it, surprisingly by spoon.

Tube Weaning - Day 10

To say that the last 10 days has been a roller coaster ride is a major understatement. The last week has definitely been the most stressful we've had since our NICU days. We've no doubt got more bumps ahead of us, but the progress Max has made in the last couple of days has been nothing short of astounding.

We've had some major up and down moments since Max began eating, as was to be expected. This is whole new territory for him and he's learning to eat much in the way that a 6 month old would do when first encountering solids. In a matter of days he's had to grow from someone who's never eaten before in his life to someone who MUST EAT to satisfy this strange, instinctual thing called hunger that he's feeling for the first time. It must have been beyond strange and confusing for him to learn the connection between hunger and eating.

I am proud to say that he has accomplished this, and more than we could have imagined. Currently he's only eating about 1/4 of the calories he needs, but considering he's only been eating for 3.5 days we think he's doing pretty great. Now that he's started eating he is being supported with tube feeds to provide him with 20% of his usual calories and 60% of his usual fluids until he begins to gain weight. He hasn't lost too much weight yet so we have some time before we need to worry about him eating more.

Currently we're riding the wave of answering any food whim Max may have. Currently his loves are graham crackers (he's had about a dozen of them today), globs of peanut butter, and chocolate. Not exactly what you might consider 'first foods', but tube fed kids rarely wean onto purees. He's also tried hummus, crackers, rice rusks, sweet potato fries, breaded veggie mock-chicken, homemade nutella, peanut butter cookies, apple, pancakes, orange, carrot, parsnip - all to varying success. He keeps coming back to his trusty graham crackers though. It's almost otherworldly to watch him take a big bite, chew, swallow, and go back for more like he's been doing this forever. The first graham cracker he ate on day 7 took him 2 hours to get through. Today I watched him blow through two of them in 15 minutes. This is the same kid that 2 weeks ago would gag and throw up on a grain of rice. We just sit and stare at him most of the day in slack-jawed wonder. More than a few tears have graced our faces.

We've got a long way to go in terms of getting enough volume, calories, variety, fluids, etc, into him - but for right now we're riding the high of having an eater. Our kid eats. With his mouth. It's just amazing.

Tube Weaning - Day 7

Our day did not begin with high morale. Max awoke whining and fussy and already too tired to start his day. He cuddled in bed with dad while I prepared breakfast. During breakfast he just sat there, and stared at us with his big, sad eyes. We tried our best to enjoy our breakfasts and put on a smile for Max.

Max had no interest in playing at all. He only wanted to be held and cuddled and would cry to be picked up as soon as you put him on the floor. A far cry from his usual self. He ended up taking four naps throughout the day instead of his usual one. He was just miserable. Lunch saw him have a total breakdown. He cried for the sandwich on my plate, and then cried even harder once he got it and didn't know what to do with it. It was a pitiful sight. He was in slightly better spirits after his long nap, but still didn't have the energy to play.

We decided a change of scenery would do us all a world of good, so we broke our usual winter-isolation and headed to the mall while it was still quiet for the afternoon. We brought a couple of graham crackers along with us just in case Max changed his mind about eating. He didn't seem interested in eating, but he did clutch one of the crackers tight in his fist on the ride home, even as he drifted off to sleep. Once we were home, he offered me a nibble, and then had a nibble of his own. And then he had another. I slung him up on my back in the carrier while I made dinner, and I could hear little nibbling, and chewing, and swallowing behind me. He nibbled his cracker through dinner time, mostly ignoring the asparagus and baked mac and cheeze that we had for dinner. He spent a solid 2 hours nibbling that graham cracker, crumb by crumb, until it was gone. Then for the next hour he nibbled through some popcorn twists. Then he spent the next 30 minutes gnawing on half a stick of a Kit Kat dark bar. After nibbling through a solid 3.5 hours (an hour past his usual bath and bed time) he started rubbing his eyes with chocolatey fists. After a quick bath and a story he was fast to sleep.

Tired and chocolatey

 
Watching Max eat, it felt like a dam burst open for him. It wasn't so much the amount he ate, or the skill with which he ate, but the undivided attention he gave to his task and the determination on his face. It's like his fear and apprehension melted away and his willingness to put anything to his mouth was rather refreshing after the start we had to his day.

Nearly 48 hours after he received his last tube meal, the first calories made their way to his tummy by his own hand. I hope those crumbs have merely whetted his appetite, and we will see more enthusiastic eating tomorrow.