The Big Day.

Surgery day has arrived. Tomorrow Maximilian will enter the operating room for his third surgery - with the same surgeon no less. His gastrostomy tube (G-tube) will be placed under spinal anesthetic in a procedure that is estimated to take about 45 minutes. Mum and Dad are nervous, as one would expect, but are ultimately looking forward to this last procedure being behind us and paving the way home. Healing time from this surgery varies, but barring any complications we can expect to have Max home in a weeks time. It couldn't come soon enough.

You just can`t let go.

Maximilian has gotten used to his Mum being around him for the greater part of the day. Because of this, he has found it quite gauche when anyone lets go of him and prefers to be in someone`s arms all day long. Happily, is mother is quite compliant with his demanding nature, and a lot of cuddles are shared throughout the day.  He`s exceeded 10 pounds now and it`s starting to give Mum and all others a bit of a workout when holding him, but feeling the burn is an even trade off for interacting with the big, blue-eyed bundle of cuteness.

Maximilian and the normalcy.

Max had a beautiful day. He had a lovely bath today where he tried his best to jump out of the water when dad started washing his more tender areas. Then, he spent a good deal of the day entertaining visitors and being a social little butterfly.  Only a few more days until surgery, and (hopefully) only a short while after that until he comes home.

Darkness is Ok.

Today, Max was basically being Max. He seems to have adjusted to the diurnal cycle we "outsiders" have taken for granted, and he seems to understand that dark time equals sleepy time. Ideally, this will translate to his transition home being pretty easy and straight forward.  Right now, he's a pretty upbeat child and the only time he's really cranky is when nobody's holding him.  Mum, Dad and his various visitors ensure that his tiny little body is held in loving arms as much as possible.

The new place.

Maximilian had his first full day at the Children's Hospital.  It took a while for him to get used to something that most people take for granted: the day/night cycle.  At the St. Boniface NICU, the lights were always on and the children there didn't quite know about darkness unless it was accompanied by an eye exam.  Max didn't quite understand the dark at first, but grew accustomed to it rather quickly and then slept the entire night away with Mum by his side. It's a different environment; Max has his own room and the nurses come to check on him regularly but aren't hovering over him like they were at the NICU. Mum and Dad (but especially Mum) are spending more time with him while he's there so that he doesn't get bored. His days are similar to those he spent in the NICU, but they're filled with more quiet and more time just being a baby without the *beeps* and *boops* of the NICU's clamoring soundscape. Despite the fact that it's still a hospital, this is a good "training area" for Mum, Dad and Max to get used to what life is going to be like at home. So far, it's filled with a lot of cuddling and cuteness.

Learning to Swim

Today was the first day at the HSC Children's Hospital.  It's been a very long day and Mum, Dad and Max are all a bit frazzled by the newness of it all.  We will report about it more when the initial shock is over.

Adieu, NICU

Mum and Dad were greeted with a bit of news today.  Max will be moving to a different hospital within a day. This means that he, Mum and Dad will have almost a full week before his surgery to get used to his new environment.  Although we will definitely miss the staff at the NICU of St. Boniface, this is one step closer to having Maximilian home and is also a step up in the type of room he'll be staying in. Because he's such a big boy now, and because he's gotten past all of his "major" complications, he's considered too old and too developed for the NICU.  His new environment will be better suited for his age, and will also allow for a bit more space so that Mum and Dad can be more comfortable while taking care of the little guy.

We would really like to make it clear; without the nursing staff, the doctors, the respiratory therapists, the occupational therapists, the phlebotomists, the everybody... Without them, our lives over the past six months would have been nothing but chaos, confusion and agony. We never felt bad leaving Max for the evenings, because we knew that the entire staff there is the most skilled, thoughtful and compassionate staff imaginable.  We would never wish this type of journey on anyone, but if anyone did have to go through it, we honestly would hope that they could do so with the St. Boniface staff helping them every step of the way.  We have formed some pretty unique bonds, and only hope that one day Max can fully understand just how amazing it was that he had such a large group of people care about him enough to see him through this whole thing.  We are ecstatic that this chapter in Max's life is coming to an end, but we will genuinely miss the wonderful people we have gotten to know over these 6 months.

Tomorrow, Max will get to meet his new friends at the Children's Hospital. I'm sure he'll wow them with his cuteness.

Sleepyheaded beauty.

Maximilian was wonderful today.  Mum and Dad went there in the early morning to catch the little guy in his wakeful state.  He was happy to see both his parents and got to cuddle the both of them for a bit. Then, he played on his tummy for a while and then fell asleep soon afterwards.   Later that evening, the little guy was fast asleep again as Mum and Dad took turns holding him. He barely realized that he was being held, but seemed to be at peace making his little dreamy faces in his parents' arms.

His Poor Wittle Tummy!

Maximilian is taking some medication for some thrush in  his mouth.  This same medication makes his tummy very upset. This has made him do something he doesn't do very often; it has made him cry more than usual. This helped us realize two things. The first is that Max doesn't complain about much; we can sometimes go weeks before even seeing a frown show up on his face.  The second thing we noticed is that his voice is stronger than it used to be.  Because of all of the intubations and his prior infections, he's had a very tiny voice because of his vocal chords being irritated and slightly damaged.  It was nice to hear that they're getting better with time.  He still sounds a bit like a duck, but he's definitely got more volume and more of a "baby" quality to his little cries.  And at 4380g (9lbs 10oz), he's sizing up to have quite a mighty bellow within the next few months.

The crying stopped when we bathed him today, though.  He was all smiles and squirms while dad and mum soaped him up, tickled his skin and made him all clean.  Afterwards, his mum and he had a great cuddle until it was time to place him in his bed, where he nodded off to Slumberland with such a lovely, peaceful look on his chubby, cheeky face.

Sleeping Cutie.

Maximilian had a pleasant visit with his Mum and Dad today. He got to play in his vibrating chair and shared a snuggle with both Mum and Dad.  Dad read him some stories, which seemed to tucker Max out, so he went to bed when his eyelids were too heavy to open.  There's not much else going on with him right now; he is like most other babies in that he basically eats, plays, poops and sleeps at various times throughout the day. He does all of it with maximum cuteness too!

Best Bathtime Ever!

Maximilian's eyes were lovely, huge, shining orbs as his Dad and Mum tickled his soapy skin to get him all clean. He giggled and smiled and made the world a better place the whole time.  It was fantastic!

Max and the newest plan.

Max is getting bigger and bigger.  He weighed in most recently at 4340g (9lbs 9oz) and is apparently in the midst of a growth spurt as he really, really, really enjoys sleeping.  He practices his smiles and frowns in his sleep, so even at his most restful, he's an entertaining lad for his Mum and Dad.

His surgery has been scheduled for December 1st.  It's not too far away, so it's giving Mum and Dad a good little bit of time to get used to the idea of their little trooper going under the knife one more time.  In a vague addition to the plan, there's the idea floating around of transferring him to the Children's Hospital at HSC a little bit prior to his surgery and leaving him there afterwards until it's time for him to come home. Ideally, this won't be too jarring on the little guy.

On/Off/On/Off/On...

Today was a fun little Max day. After his parents bathed him, Max decided to fall asleep.  He was so good, and so calm that it seemed like he would sleep the night away. Then, he woke up. And fell asleep right after. And woke up. Then played on the floor. And had some close time with Mum. Where he fell asleep/woke up/fell asleep/woke up a lot.  He just didn't want to make up his mind tonight.  It was lovely hanging out with him and seeing him bounce back and forth from Sleepy-Max to Wakeful-Max so quickly. The whole time, he was absolutely cute and adorable.

Max is wonderfully dozy

Maximilian really likes being asleep. He enjoys waking up too. But mostly because he knows this means someone will pick him up and snuggle with him so that he can take a nap before it's his 8th bedtime of the day.

Today was a good day with him. He snuggled a lot with Mum (and a bunch with Dad, too) and got to play under his little musical sun that he seems to really get excited about.  That kid just absolutely loves dancing when the music plays. He even gets a bit upset when it stops.

Snuggle, eat, sleep, repeat.

Nothing much is new in Max's world today. Max got three cuddle visits - two from Mum and one from Dad. He's been pretty content to snuggle up and snooze with his parents and pack on the ounces.

Mum tackled her first solo bath today with Max and she was sure to sneak in some extra tummy tickles for Dad. Max showed his appreciation with squirms and smiles.

Otherwise, we're all just anxiously awaiting Max's surgery date, which will give us our home time ETA. We'll find out soon, hopefully.

Sleepy head.

Max had a very sleepy day. The little guy really likes his snoozes, and he's got his night and day a little upside down. Add to that the eye exam he had and the nose suction after an out-the-nose spit up and Max was just wiped out. His parents were happy to offer snuggles to the little sleepy head.

We are currently waiting on a surgery date for Max's G-tube placement - this will hopefully be next week. He will be having his surgery under spinal anesthetic in order to avoid the complications of intubation during general anesthetic. We certainly don't want a repeat of what happened post-hernia surgery. When Max is transfered over to Children's Hospital for his surgery he may be waving his final goodbye to the St. Boniface NICU. It's possible, that because most of the specialized staff surrounding this procedure are at the Children's Hospital, that Max will remain there throughout his healing and then be discharged home from there. More on those details once the surgery is booked though. The talk of  home has everyone quite excited. Max has no idea what the word outside those hospital doors holds for him. We're very much looking forward to showing him.

Excitement abounds.

Maximilian got VERY excited about his bath today. The moment he realized Mum was wrapping him in his bathing blanket WITHOUT his diaper on, he started smiling his clumsy smile and waving his arms around in party mode. He then had a great bath and got a good tickle from Dad.  It was a great, relaxing day with him.

He was weighed today too, and came in at 4230g (9lbs 5oz). This means that he weighs 5.5 times more than he did when he was born. It's wonderful to see just how far he's come since that day.  It's also cute to realize that his torso fits clothing made for his (adjusted) age, but his legs still have some room in them. He's definitely a tiny guy, but we can attribute his big chest and tiny legs more to genetics now instead of to his being premature.

Max takes it to the floor.

Maximilian had a great time with Mum and Dad today. He breastfed really well with Mum in the daytime and was awake for a good portion of her first visit with him.   In the evening, Max did well again at Mum's breast and was awake and in a great, playful mood with everyone around him.

Because he was so awake, he decided that he needed to play on the floor.  Mum set up a little play mat for him with some toys and music to amuse him. He was quite excited to be playing and kept it up until it was time for his next feed.  By the time that feed came, he was already dozing off, so Mum and Dad put him to bed and kissed him goodnight.

Health-wise, there's a bit of news regarding Max.  His MRI results came back and there was nothing of note, meaning that Maximilian's noodle is developing normally. This is a good thing for a child who has had continuous breathing issues since birth, and helps Mum and Dad worry less.

The other bit of news is regarding his feeding. While Max is doing very well at the breast, he is still not feeding well enough to be entirely independent of supplemental feeding systems. What this means is that Max needs some help getting food to his belly. What this means in his case is that he has another surgery ahead of him. They will be implanting a gastrostomy tube (aka G-Tube).  What this is, is a simple feeding tube that goes directly to his stomach through his belly. The benefit here is that he'll still be able to learn to feed orally while not having to worry about whether or not he's getting enough. The other benefit is that we can bring him home without his breastfeeding skills being perfected. As it stands, there is nothing, medically speaking, standing in the way of Max being at home; but it could take Max a couple of months before he masters feeding enough to meet his caloric needs. No one wants to see him stay in the NICU just because of that. It means another surgery, but Mum and Dad think that having him home sooner (rather than later) is a good trade off.

Splish! Splash! Max took a bath.

Today was another bath day. Maximilian enjoyed the heck out of it, then cuddled with mum.  They tried breastfeeding again, and Max did really well for about 25 minutes, then just got tired and was done.  It's good to see him coming along at that. We know it'll be a long time before he's up to 100% at-the-breast feeds, but it's great to see that he knows what to do when he's in the right mood.

Max's movie debut.

Max helping Mum open her birthday present.

Yawwwwwn!

Our first family photo without the yellow gowns.

Max's handsome new outfit.

Don't worry. He's still chubby.

Today was another bath day with Max. He enjoyed it immensely, then enjoyed a good cuddle with Dad.  He got weighed and came in at 4120g (9lbs 1oz) which means he's gaining a bit less per day now. They've decreased the size of his feeds for a few reasons. For one thing, he wasn't always keeping everything down.  Most likely, they were increasing it too quickly before, so they're pacing it differently now. Another thing is that he may want to breastfeed more if he is a bit hungrier between feeds.  They're not starving him by any means, but this may simply trigger a stronger feed craving in the chubby guy.  Hopefully, it helps and he can progress even faster at the whole feeding thing.

Max and the noisy machine.

Max had his MRI today. The test itself is routine for NICU residents born so early. Still, we didn't get the results yet, but the actual event itself went pretty well.  Dad got to push his little cart and show him off to all the passersby on the way through the underground tunnels to the MRI area.  Once there, Max stayed still until the very last (and noisiest) MRI image was taken. Ideally, nothing will be found of issue; the whole test is routine, and wasn't spurned by any concern in terms of his brain's development or status.

Later in the evening, Mum and Max tried some breastfeeding again.  Max had slept so well throughout the day, that he was extremely awake for this attempt.  He did really well; he spent 25 minutes at the breast, and seemed to struggle far less than he has lately. Hopefully, this will become a good, new habit.

The saga continues.

Here is part 4 of Max's growing saga! He was weighed in today at 4100g (9lbs). As you can see, he's packed on more than 7 pounds since he was born.

Also, you can check out his fat rolls as we snapped some shots of the little guy enjoying his bath. Max loves bath time!

Max is working hard.

Max is getting the hang of breastfeeding a bit better.  He's still in the "learning" phase of it all, but he seems to struggle less with latching, and is definitely getting the suck/swallow/pause routine down a whole lot better than he was before.  We're very proud that he's fighting through his obvious oral aversion to get to this point.  He's quite a cute little trooper.

He's getting bigger. His last ID anklet was starting to get a bit tight, so they've exchanged it for a larger model. It's wonderful to see examples like this of his increase in size. Because we see him so often, we sometimes forget just how much he's developed since he first set up camp at the NICU; it's great that he's growing out of things.

A slight bit of news...

Max is no longer hooked up to his Oxygen Saturation monitor.  Breathing is no longer an issue for him.  He simply needs to learn to eat. That's it.

He was measured recently. He's a gargantuan 50cm (19.75in).  He's so large that they had to install massive oversized cribs to fit his entire length.  This is false. He's still a little guy, but with Mum and Dad being card carrying members of the Shorty Brigade, Max is doing well for his (corrected) age. Keep in mind, that he lost almost a whole month of growing time back when they were restricting his weight gain for his PDA surgery, so he won't be breaking any records, but he'll catch up to most other babies within the next few years.  His cheeks are in the 99th percentile though.

No news...

It's nice to have finally entered the stage with Max where there isn't really much to say about his progress. He continues to get comfortable with things in his mouth and the mechanics of eating, but otherwise, we just have to wait for him to "get it" so he can come home.

The monotony is refreshing.

Some > None

Max is re-learning to enjoy breastfeeding.  He's a lot less shy about it, but still seems to be a bit confused with what he's supposed to do with the milk once it's in his mouth. All the same, he learned to freak out less as time progressed and seems to be enjoying this bonding time with Mum.  Both her and his patience with the process are quite extraordinary.  He's still not getting a lot of milk when he feeds, but he's getting some and that's more than none.

He's now heavier than Dad was when he was born.

Max bottled twice today.  Once for 20ml and another time for 17ml.  This is a huge deal for us and him. Speaking of huge, the little tank is now at 3940g (8lbs 11oz) and his arm rolls have their own rolls.  

Today was a great day. We brought over a vibrating baby chair for him to play in. He was very soothed by the constant whirring of the motor, and seemed to really enjoy clumsily reaching for (and occasionally swatting) the toys hanging above his head in the chair.  After that, he and Mum had a lovely cuddle and he sucked on his soother for an hour or so. He's making such huge strides and we're so very proud of him.

Practice makes perfect.

Today was another great day with Max. He's spending more and more time awake and is enjoying play time, bath time, and story time as much as any baby does.

We've re-entered the home stretch with Max. The only thing keeping him from home now is learning how to eat - again. His post-surgery intubation has left him with a pretty strong oral aversion that we have to help him overcome. Max is spending lots of time practicing with breast feeding, sucking on his soother, and eventually will get back to the bottle. We'll take lots of baby steps until Max learns to trust things in his mouth, and then hopefully he'll sail on through to eating. Practice makes perfect.

Making up for lost size.

Max was weighed at 3830g (8 lbs, 7oz) today. This is a massive gain from Thursday`s weigh in. He is chunky and cute and lovely and awesome.  Mum and he had a great cuddle today. He was extremely well-behaved and gave both his parents a whole lot of coos and wonderful smiles.

He practiced sucking on his soother with the therapist earlier in the day. It took a while, but once he realized that soothers are awesome, he sucked on it like it was going out of style. Hopefully, it won`t be much longer until he`s back to bottle training. We know he can do it, he just has to remember that not everything people put in his mouth is going to be an infernal torture device.