Nature, I hate you.

Sincerely, Max.

It was a nice day in Winnipeg today. The sun was shining and it wasn't too cold (in Winnipeg this means above zero) so we thought it might be a good chance for Max's first walk around the neighbourhood. So we bundled Max up, I snuggled him up against me in the carrier and we stepped out into the sun and fresh air.

The sun and breeze hit Max's face and he gasped and reared his head back. Not a great start, but hey, this was  the first time he'd ever been exposed to the elements, so we walked on, giving him a chance to get used to the experience. The breeze kept blowing across his face and Max would gasp for air, much as babies will do if you blow in their faces. By the time we reached the end of our street Max was tense and crying, so we turned the corner to head up the other side of the block and back home. Five minutes after it began our adventure into the great outdoors was over. It took more time preparing to get outside than we actually spent walking around the block, but it was fun trying!

Hopefully in another month we won't need quite so many layers and we can try again. For now Max's take on nature - "I hate you."

Be Mine.

Happy Valentine's Day!

We admit it, we're not really the Valentine's Day type. Overpriced dinner, flowers, hallmark sentiments - not really for us. But give us a Maximilian decked out in hearts and we're in the mood for love. He's certainly reason enough for celebration. We spent the day just like any other though; lots of giggles and laughs.

Today we had a nurse come to the house to weigh Max. He had a very small dip in his weight between two of his recent doctor appointments, so they wanted to make sure the changes we made to his feeds were doing the trick. He seems to have caught right up, gaining half a pound and growing an inch in 2 weeks. He's now finally broken free of the 11 pound bracket and is now weighing in at 12lbs. For a "5 month old" this is still pretty small, but we were reminded that in relation to his height, his weight is appropriate. We looked up the charts, and sure enough, while his height and weight seperately aren't on the chart yet, his height in relation to weight is roughly in the 40th percentile. So he's growing nicely on his own curve. He's happy, healthy and full of energy, so we have no reason for concern.

Max is hitting some new milestones lately, and improving on others - he seems to be doing something new nearly every day. He's incredibly vocal, and is always "talking" and "singing" to us and his toys - this is usually accompanied by the latest dance move. Max has reached that age where everything seems to find its way into his mouth. We're really starting to wonder how much longer we're going to wait to see a tooth errupt - he's often feverishly gnawing on his hands (or ours). His core strength is developing well, and Max is getting more steady at sitting; although more often he'd rather show off his standing skills - he loves standing! For the longest time he protested greatly to tummy time (like many babies) and we couldn't keep him on his belly for too long, as he'd inveitably throw up. He's become much more tolerant of tummy time and has finally rolled over. He startled himself the first time he did it, but went back for two more rolls before he broke out crying. We think it was a good start. When playing on his back he tries quite hard to launch himself backward with his heels - this may be a family trait, as his Uncle Cameron crawled this way, back arched, head to the floor. We've already told Max that he has to grow back the one bald spot before he acquires another though, so he should really work on that front crawl instead.

All in all, Max is a super happy baby. He's making the winter hibernation quite tolerable.

 

P.S. We did promise a video in our last post - it's in the works! 

Feeding Tube Awareness Week.

Please support Max by spreading the word about Feeding Tube Awareness Week! Max couldn't be home with us without his feeding tube and it's a life saving intervention for lots of kids for lots of different reasons.

"Because there is little awareness of tube feeding, it is often misunderstood. Tube feeding is a last resort for medically complicated children who are unable to eat or drink enough to live and thrive. We want to raise positive awareness of this life saving medical intervention."

This week we'll be posting a video showing how we feed Max. Most people know he's tube fed, but many might be curious to see just what that looks like as part of our daily routine. Stay tuned!

Visit the website www.feedingtubeawareness.com  for more information. Feel free to use one of the tubie graphics as your profile picture this week to show your support. Max thanks you!

8 months.

Eight months ago today -14 weeks ahead of schedule - Max came into the world, took his first breath, let out a tiny yelp, and was promptly whisked away to be resuscitated by a medical team. We held our breath waiting to hear that our baby was okay. It felt like an eternity. Nearly an hour after Max was born we learned we had a boy. Hours later we were able to see our new baby, first Dad, then Mum. We spent hours staring at his tiny body through the glass of his incubator, not able to touch or hold him. It was 10 days before Mum was able to hold him for the first time. It took about as much time to get him out of his little house and situated with all his tubes and wires as the cuddle itself lasted. He fit quite neatly in the palms of our hands.

Those first few weeks were scary and filled with much uncertainty. We've come so far from those early, nerve-racking days. Our birth experience was a far cry from what we had envisioned, and even now, life with a baby, while mostly pretty typical, isn't quite what we had pictured. But we couldn't be happier, and couldn't possibly be prouder of our little Mighty Maximilian.

Max continues to grow and develop much like any 5 month old (he'll be 5 months corrected in 6 days). We continue to concentrate on his weight gain, as we'd like to see him catch up a little more. Reflux is a daily battle, which is not only really messy, but one that makes weight gain more of a struggle. Throwing up frequently is also a bit of a deterrent to eating. Once Max reaches 6 months corrected the plan is to start introducing solids little by little. For now, we're "painting" his lips with various flavours - breast milk, cereal, carrots, avocado - in the hopes that it will prepare him for the introduction of eating orally. We can't imagine what it must be like to try eating after going months without really tasting anything, but it has to be strange.

Earlier this week Max got his G-tube changed to a lower profile model. G-tubes are generally placed with a PEG style tube (as you can see below) until the stoma has fully healed, about 8 weeks post-op. On someone as little as Max, this dangling tube gets in the way a whole lot, so it was nice to get the tube changed. It's not an invasive procedure, and in fact, Mum did it herself in the clinic. It's just a matter of deflating the balloon that holds the tube inside Max's stomach, removing the tube, inserting the new one, and inflating the balloon with water. Easy as pie - which is good, because now we're responsible for changing the tube approximately every 4 months.

Otherwise, things around here are just in full-hibernation mode. We spend our days, eating, reading, playing and sleeping, and hiding away from all the germs that live outside the walls of our apartment. Thankfully, (or not), the cold weather hasn't made staying inside feel so bad. We're eagerly awaiting spring, and the adventures it will hold.

PEG tube - dangly and tempting to grab.

Mic-Key button - low profile.

I'm sure my mouth is around here somewhere!

Mum and Dad love my ears.

Snuggled in my carrier, reading a book with Dad.

Snug as a bug.

Rise and shine.

Max is nearing his 8 month birthday (or 4 1/2 months corrected now) It's hard to believe he's been with us for so long, and yet he's only been home with us for just under 2 months. That being said, we really feel like a family now. We have our routines and rituals and our secret family jokes. We know what Max wants when he cries (most of the time), the face he makes just before he spits up (we're changing our clothes much less frequently), and just what toy or silly face will make him giggle. He's learning new things every week, and it's so much fun watching him learn about his world.

Morning seems to be one of Max's favourite times of day. Once he's awake enough to realize he's in bed with Mum and Dad, and it's a brand new day, he just beams with happiness. He grins up at us and kicks his legs and bats his arms in the air, dancing and cooing. If he thinks it's a great way to start the day, he has no idea how wonderful it is for his parents. Even waking from nap time seems cause for celebration. A mobile hangs above his crib and it seems to be his favourite toy of late. It's an old, wind up, Fisher Price mobile that belonged to Mum when she was a baby. It has strangely coloured farm animals on it that slowly rotate as the mobile tunes wind down. He watches them intently; kicking, giggling and squealing with delight, only occasionally looking over to make sure you think it's just as exciting as he does.

Max has always loved bath time. Now that he gets to bathe in the big tub and float around, however, it's added a new dimension of interest for him. He enjoys watching his toys float by, "swimming" around the tub, kicking his legs, and recently he discovered the joy of splashing. Most days he'd happily play in the water until he becomes pruney, so he still protests a little when it's time to get out and dry off. He's happy to settle down after the bath with a meal and a good book though. He particularly likes if he can help hold the book, touch the pictures, and help turn the pages.

Max is definitely beginning to learn that his voice can demand attention. Although he hasn't quite figured out that walking away doesn't make Mummy disappear, yelling for her does make her come back - it's a cool new party trick. And, as it's never too soon to start learning new ways to communicate, Mum and Dad have started learning baby appropriate sign language with Max. Max just enjoys watching right now, but hopefully one day he'll be able to tell us he wants cereal, his tummy hurts, he sees a bus, needs a diaper change, or he wants his Mummy, well before he has the ability to speak them.  Hopefully that will ease some communication frustration in the future.

On the medical front, Max continues to do well. As of his last weigh in, he was 11lbs 7oz, and is measuring 22.5 inches. He's still not on the growth chart for his corrected age, but he continues to grow steadily so we don't have much cause for concern. No matter what he does, he's genetically destined to be small.

At his last eye exam he was finally granted the coveted - "we'll see you in 6 months." Preemies in the NICU (and often beyond) are closely monitored for ROP (retinopathy of prematurity) which is an eye disease that affects preemies. At its worst it can cause retinal detachment and blindness. It is successfully treated with laser eye surgery, but best case scenario - it corrects itself with time. At one point several months ago, Max was flirting with eye surgery, but it began to correct itself and in time got better until his last appointment he received his, "all clear!"  We were pretty happy - the eye exams are incredibly unpleasant.

It's hard to believe that in just over 4 months Max will be 1 year old. He should not have been around for that long yet, and yet he should have been home much longer. It all seems so strange. We're trying to not let the time slip away too quickly and enjoy every moment. Here are a few moments we've enjoyed recently.

Kickin it on the play gym.

While the debate continues about whose eyebrows, fingers, forehead, etc., that Max has - there is no debate that he sleeps like his Daddy.

I love mornings! (whose kid AM I?)

Wait, Mum! I have an idea!

Yes...it will be great....

Hey, are you guys listening?

Oh, nevermind...back to giggling!

It's a brand new year.

Max has been home for a little more than a month now and is settled in quite well. We've all developed a bit of a routine, and we've gotten to know our little guy in a way we just couldn't do in the hospital. It's wonderful being able to parent in private, in our own environment. It's one of those things you take for granted when you imagine having a child.

Today Max is 4 months old, corrected age. This is a term that gets used a lot with preemies. This is the age he would be had he been born on his due date. So, while Max is 7 months old according to his birth date, developmentally speaking, he's really only 4 months old. While Max is a little smaller than your average 4 month old (just over 11 lbs now!), he's right on track in terms of milestones for a baby that's just turned 4 months. He's reaching and grasping at toys, he loves putting things (including his fists) in his mouth - which is a big deal for a little guy with oral aversion, he smiles and kicks and makes lots of eye contact, he's getting more and more vocal, with the "da" sound being the latest addition to his cooing repertoire. His core strength is developing nicely, and he will sit up for several seconds if you're holding his hips for support. He's becoming fascinated with watching us eat, as if he's trying to figure out what it is everyone else seems to be doing with their mouths - hopefully this is a good sign in terms of his aversion. The only area Max is lagging behind on is pushing up and rolling over while on his belly. Because of his G-tube surgery Max lost out on nearly a month of tummy time, so he has some catch up to do in that area. But overall, he is on track. And what seems most important of all for many weary parents - Max is sleeping through the night, and in fact has been since we arrived home with him. He is now content to sleep 7-9  hours through the night, and takes several naps through the day. So, for all the work that Max requires, at least we are all fairly well rested!

Since we've been home we've had several doctor and specialist appointments for Max - pediatrician, ophthalmologist, ENT, dietitian and feeding clinic, infectious diseases, RSV vaccination clinic - and it's only now seemed to slow down now that everyone has had a chance to see him and decided their follow ups can be spaced out more seeing as Max is doing so well. Considering where he started, we're so thrilled that he's doing this well. He's doing so well, and seems so much like any 4 month old that it's sometimes hard to remember that he's still quite fragile and requires us to remain extra vigilant with his health, especially during this cold and flu season. Preemies (especially those born as early as Max) are particularly vulnerable to colds, flus and RSV (a respiratory virus that is very dangerous for preemies). Not only is Max very susceptible to catching these illnesses, but because he has chronic lung disease, these illnesses that might make your average baby pretty miserable, would buy Max another hospital stay, complete with oxygen support. We know many people are waiting anxiously to meet Max (and really, we can't blame them) but we simply can't take Max out in crowds, to large gatherings, places with lots of kids, near people who smoke, or anywhere where there might be people who are sick. This means that visits need to be postponed with people who are sick, or have a cold or flu going around in their house. We know everyone understands and we're all appreciative of your patience. Max will meet all of you eventually!

Until then, please enjoy this gummy grin.  :)

Max's Holiday Highlights.

My first Christmas and New Year's was great! I'm not really sure what it was all about, but I got to see my family, I got lots of hugs, and even some presents (I liked the tissue paper best of all). I'm just really happy to be home with Mum and Dad - they say that I was the best present ever. Here are a few pictures of me enjoying the holidays. Mum and Dad will be adding more updates about me soon (they're very busy loving me!)

-Maximilian

My Christmas PJs - complete with working bum flap!

This is my stocking. I'm not entirely sure what to do with it.

I got some fancy red tissue paper! Santa sure knows what I like.

This is me with my Vóvó. Looking this cute makes me sleepy!

Oops...you caught me sleeping again.

Here I am with my great uncle Tom learning about hockey...or was it football.

I love my Mummy.

Here I am reading Mum one of the new books I got for Christmas.

I love my Daddy.

Happy New Year! I even made it to midnight!

These cheeks are clearly made for kissing!