Happy "excuse to wear green" Day!

 

And then there were two.

Something new seems to happen every day when you have a baby. It must be amazing to be learning so many things all at once. It really is true what everyone tells you, "Don't blink, or you'll miss something!" It really feels like we've been making up for lost time these last three months. Max was essentially a 3 month old when we brought him home and it really felt like, in a lot of ways, that we had missed that newborn stage with him. Sure we spent time with him, but it's hard to fathom how difficult it is to feel like a parent when your child has never left the hospital unless you've tried to do it. Now that we're home we appreciate every moment a little bit more.

Had Max been born on his original due date he would be 6 months old today. It's hard to believe. It seemed to us that Max was fairly on-track developmentally for his corrected age. We had an appointment with occupational therapy last week that confirmed our suspicions, and it was nice to have the professional nod of approval. There's a fairly wide range of "normal" when it comes to developmental milestones for babies, but Max is well within that range. It's amazing considering where he started. Max is tolerating, and even sometimes enjoying tummy time; pushing up on his arms, rolling over, and trying really hard to get onto his knees. He's very close to sitting on his own and still loves standing - he's taking all his weight on his legs, and just needs help balancing. He's grabbing at toys, making lots of noise during play time, and recognizes his name. We're beginning to wish that a couple of teeth would make an appearance, as Max is a drooling, gnawing, ornery little boy lately - soon, perhaps!

On the eating front, Max has been doing very well. We've been offering him rice cereal once a day and he's doing really great. He seems to love the taste and gets very excited about the whole experience. He still doesn't seem to really understand the mechanics of eating, but ends up inadvertently swallowing some anyway. We're more concerned with building positive associations with his mouth and eating right now and the mechanics can follow. We even tried some pureed pears today, and while he wasn't too sure about the taste and texture he was eventually opening his mouth for more tastes. Certainly a bold effort - we're very proud.

In other health news, the dreaded cold has found our house. For a home with a preemie it might as well be the plague. On the plus side it is Rafael that is sick, and not Max, but we're pretty nervous about having him in such close quarters with cold germs. Rafael has been camping out in the living room and sleeping on the couch and Max and I have been sequestered to our bedrooms. We occasionally wave at each other if I'm in the kitchen, but that's been the extent of our contact. It's been a little rough not having an extra set of hands occasionally throughout the day, and Rafael misses Max terribly, but we're hoping to get through this unscathed. I'm hoping that Max being breastfed makes a difference and will protect him from any wayward germs as we all cross paths throughout our apartment.

We're becoming desperate for winter to be over. Hurry up spring!

The difference of 77 days.

"Is Max eating anything yet?"

We've heard this a lot over the last few months. It was the hot topic before we left the NICU and it's become of even more interest since we've been home. Really, no one wants Max to eat more than we do. The g-tube affords us the luxury of having Max home with us, but it is no walk in the park and comes with its own set of complications. We want him to eat as soon as he is able.

We knew he wasn't ready when we brought him home though - that's why he had the g-tube placed, after all. We've spent a lot of time working with him to overcome his oral aversion, mostly in the way of desensitizing his mouth and getting him used to the sensation of having non-painful things happen in and around his mouth. Our efforts, combined with his own (Max is currently incapable of holding anything in his hands without trying to shove it in his mouth) have been making great strides.

We were told it was likely that Max would skip the bottle stage altogether and move onto a spoon and cup when he was ready for oral feeds. Back in December when we first came home we were encouraged to try some rice cereal to see if a substance thicker than milk might make it easier for him to control, and thereby panic less. It didn't go so well, and it was pretty clear he wasn't developmentally ready for that step - after all he was only three months corrected at that time, which is three months earlier than they generally recommend introduction of solids. We decided to let it rest and concentrate on positive experiences until we felt he was ready again.

Recently Max has been showing signs that he might be capable of trying food again. On a whim I decided to offer Max 2 mLs of breast milk in a syringe. One drop at a time, he swallowed it down, waving his arms and grabbing for the syringe, sticking out his tongue. It took about 5 minutes to finish, but he swallowed it all, didn't panic, and didn't throw up. This might not seem like a big deal, but around here, it's a major win. We decided to throw caution to the wind and pick up another bag of whole grain rice cereal. We set out cautiously, but with high hopes. We were pretty thrilled with how Max took to it. He swallowed several spoons of cereal, without much fuss. No lies here, we were both holding back a few tears. A baby's first bite of solids is always a milestone to remember, but for us, it's a blinding ray of hope. We came home not knowing how long it might take to get Max to this point. Now, we're no fools - you don't make it through 6 months in the NICU without knowing a thing or two about how tiny the steps foward can be at times - but this is such a huge victory we can't help but celebrate.


Compare Max's first attempt at solids, with his second attempt, 77 days later!
Make sure you watch the first video until the end. It's a doozy.

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.