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.