Looking back.

This year has been trying for both Mum and Dad (and Max, although he will hopefully not remember any of it).  With that in mind, moments like these make everything worth it.

He knows us now; and, he seems to really like us.

Max trains his parents.

It's now been around 2 weeks since we brought Max home. It's been lovely.  It's also been quite a learning experience.  It's obvious to us now that new parents really have no clue what to expect. Suddenly, we don't have machines going boop and beep to tell us if anything's going on with him. We can't rely on the steady, watchful gaze of a nurse to look out for hiccups or problems arising with the little guy. We don't have the luxury of going out together for a quiet evening in a restaurant or a movie theater. Even grocery shopping has become a solo, expedited effort.  We still wouldn't trade it for the world. We're slowly learning his moods; they vary from sleepy-happy to sleepy-sad. They're not the same moods he had in the NICU or at HSC; he has definitely done a lot of developing since then. When he is awake, he tends to be curious about his surroundings and has been a pleasant companion to both Mum and Dad. Feeding him is a lengthy process, but it affords us some much missed bonding time with the little guy. Because of this, he's become a bit spoiled and fusses a bit here and there when we try to put him in his own chair or into his crib when he doesn't believe it to be nap time. Overall, however, the couple of  weeks at home have been spectacular and we look forwards to the many more weeks we get to spend with him as he grows and learns about this weird, wonderful world we've brought him into.

A week to reflect.

One week ago, we walked out of the hospital like we had done every single day for 185 days - but this time, Max came with us. It honestly felt a little like we were stealing him.

After 6 months, 26 weeks, 185 days, 3 seasons, 3 surgeries, 2 hospitals, 1924 diaper changes, 982 hand washings...after collapsed lungs, blood transfusions, jaundice, heart surgery, hernia surgery, G-tube placement surgery, lung problems, airway problems, eating problems, infections,...after ups, downs, and a whole lot of fighting...Max finally made it home.

It's all a little surreal so far.

We're all pretty busy around here, getting used to each other and a new schedule, so for now, enjoy a little visual update.

The transition.

The transition home has been an interesting one. Mum and Dad are enjoying the heck out of having such a beautiful little guy living with them. It's nice to have him in our environment and not have ourselves feel like visitors with our own son. It's lovely just having him there so that we can hold him and show him our love at all times.  He's become a bit of a cuddle-addict in the process; he just does not like being placed in his bed too often.  He's definitely getting better at showing his displeasure with certain things, and his little voice gets bigger and bigger every day. The routine with him is starting to coagulate, and his sleep schedule should make some sort of sense soon. For now though, we'll gladly take a bit of the chaos of having a new roommate over having to slog our way across town to visit the chubster at a hospital.

Home, sweet home.

Change of Venue.

Max came home today. This is the best day in a long time.
More after his parents are able to do something other than smile ear-to-ear while hanging out with their boy in their home.

Lots of smiles

Max was quite the ham today! He enjoyed making faces with Mum and Dad and had many good little giggles with his folks and Vóvó.  He didn't need any pain killers today, and other than a bit of crankiness due to his tummy having a bit more bubbles than he'd like, he was in a great mood.  The little guy is coming along swimmingly!

Toughness

Max was far more relaxed today than he had been the past few days since his surgery.  It's always amazing to see how quickly babies move past tiny things like surgery and pain.  Kicking his legs doesn't twinge him too much now, and his pain medication (baby strength acetaminophen) is being administered less frequently than it was yesterday.  It's humbling to see someone so tiny and otherwise helpless move past these things so gracefully.  If his dad were in the same position, there would have been far more whining and crying at this stage. Maximilian is one tough cookie.

Kicking and screaming makes for more kicking and screaming.

Today, Max was getting used to his new attachment. Although he's no longer in a lot of pain, he can still feel some strong discomfort if he moves just the wrong way. Unfortunately, kicking his legs seems to twinge him, making him a bit upset, which he usually deals with by kicking his legs.  He's learning to deal with it well, however.  Over the next few days, the discomfort in his belly will subside and become more of an annoyance than an actual pain.  For now though, Mum and Dad will do everything they can to keep him as comfortable as possible.

A full day with the G Tube

Max is doing well with his G-tube. So far, he's healing up well and needs less help with his pain management than the medical staff was expecting. He's definitely not the most comfortable he could be, but his mood is generally pretty upbeat.  Also, he's started making sucking faces and sounds more.  The feeding tube he had at the back of his throat must have been affecting his comfort more than we thought as he finds it much easier to tolerate things in his mouth now that he doesn't feel like he's always got something in his throat.  It will still be a long journey to have him breastfeed all of his meals, but at least we know that he's more willing to do so now that he doesn't have something in his throat making him feel like he's always gagging.

Tomorrow, Mum and Dad will begin officially learning how to care for Max and his G-Tube. Once the medical staff is confident that we're both comfortable with his situation, and that our little guy needs no more medical supervision, Max will be on his way home.  This finish line is THAT much closer.

So long bare belly, we'll miss you - but good riddance NG tube! 

Beautiful, tapeless, tubeless face!

Getting some dinner with the new tube.

Max's new G-tube - still bandaged and taped from surgery.

Max's third time under the knife.

Today, Max had his G-Tube installed - by the same doctor who did his PDA as well as his hernia surgeries.  The surgery went well and they didn't need to intubate him this time.  He'll be a bit drugged up while he recovers over the next day or so, so there's not much to report other than the fact that he's doing well (for a baby that just underwent surgery).  He can definitely feel the pain associated with his surgery, but the medical staff is on top of it and he's not suffering because of it. For now, he'll just doze away until they move him back to his original room at HSC.

Wordless Wednesday.

Goodbye, NICU crib...

Goodbye, yellow gowns...

Goodbye, bright lights...

Hello, big boy crib!

"Wow...my hand is AWESOME!"

Max and great auntie Shelley

Max and great uncle Tom

Max and cousin Ryan

Max and Daddy chilling in their white t's....not a yellow gown in sight!

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.

Happy Halloween from the sweetest pea in the pod!

A lovely, warm bath, and a whole lot of cuddles.

Max had a lovely time being bathed by Mum and Dad tonight. He got to spend a lot of time just soaking in his little whale tub, feeling the warm water cover his chubby little body. He really does love it quite immensely.  After his bath, he quickly fell asleep in Dad's arms while Vóvó did her best to try to wake him so that she could gaze into his wonderful blue eyes.  Max takes after Dad though and he would not wake up, regardless of how much she squeezed and pulled at his feet.

Today was another great day.

Stretching is an important part of your daily routine.

Maximilian has been coming along at a great pace lately.  He was given a bottle today, and despite not really drinking milk from it, he didn't gag or act out in any way with something in his mouth.  After his last intubation, this is progress. Ideally, he'll be back at the bottle soon so that he can get back to the point he was prior to his hernia surgery.

Otherwise, he's doing some exercises to decrease his stiffness.  Premature children tend to stiffen up due to their prolonged time spent in a bed.  He needs to stretch out those tense muscles and learn to limber up a bit. He doesn't seem too concerned with any pain related to the stiffness, but it's a good thing that we're getting him moving. He seems to enjoy his out-of-bed time.

All other things are pretty good with him. His breathing continues to improve, his mood is the best we've seen it in weeks and he's continuing to get cuter and more expressive. Barring any other complications, this is the "home stretch".  We'll let him take his time getting ready for home, but we sincerely can't wait for that time.

Smiling is great!

Sometimes, you miss people you see every day. You're around them, you interact with them, you watch them learn things and grow. Still, with all this growth, you start to miss little trademark moments with them that you just get a bit melancholy when you realize that those little things that make them them haven't been present for a bit.  We missed Max's little cooing face. We missed his energy. We missed his general happiness despite his bad predicament.

Today, we got Max's little cooing face again for the first time since before his hernia surgery.  It was lovely, and it brightened up our parental faces quite a bit.  It was FANTASTIC! To top it all off, just before he went off to Slumberland, he gave us a big, full-faced, non-gas-related smile. Rafael's heart soared and Brienne's eyes gleamed with a shine unseen in quite some time.  This lovely, 3660g (8 lbs 1 oz) child made our night.
He also made Vóvó's night by smiling at her in between restful readjustments. She enjoyed her time with the little butterball as quite a bit.

Oh yeah. His off/on/off/on/off/on/off/on scope is off again. He's doing that well with his breathing right now.  If it continues like this, he'll never need a scope.

Max's adventure in the chair.

When we reached the NICU today, we were welcomed by Max sitting in a vibrating chair and a nurse sitting on the floor with him rocking said chair. He really, really enjoys this chair.  He gets so calm while sitting in it, and seems so peacefully content in that chair.  Later that same visit, Mum and he had a bit of a cuddle until Max was sleepy enough to put to bed. He didn't quite want to be let go, but eventually the sleepiness overcame him and he was chubbily asleep in his crib.  

The second visit was just as peaceful. Max was laying in his bed this time. He woke up at the sound of our voices and let us change him while he lazily closed his eyes.  Rafael read him some stories as he ate. It was a quiet evening, but a beautiful one all the same. These are the types of visits where you forget that Max has wires and tubes stuck to him.  You see past all that and remember that he's a cute baby learning about his world.  It's nice to have refreshing visits like this.

Insert Sound of Frustration Here

Max is wonderful. He's chubby, growing, cute and lovingly interactive. Unfortunately, there's still something amiss with his airways.  They don't know exactly what it is, so the scope that was on, then off, then on again, then off again is back on.  They're going to investigate his airway issues on Friday and decide then if anything else needs to be done that day.  Hopefully, if anything does need to be done, it will not be too invasive. Until then, we can only wait.  We're getting really good at it.

Sleepy Max on a Sleepy Day

Today's weather in Winnipeg was dreary, dark and rainy. It's one of those days where you curl up under your blankets and try your best to avoid the world outside that little protective bubble of cotton and what ever it is they filled your duvet with.  Luckily for Max, he's staying at a luxury resort where they can comply with these moods if he so wishes.

We visited the little guy twice today and both times, he seemed to just want to curl up and sleep while being kept warm.  He had a long-ish day all the same, though. They removed his PICC line and he was having some upset tummy issues - most likely because of the strong antibiotics they've had him on.  It was difficult for him to settle down perfectly, so they put some prongs in his nose to assist his air intake slightly.  He wasn't crashing or in any real danger, but they wanted to ensure that he had the help he might need so that he could avoid having to struggle too much while he regained his stamina and breathing abilities. It was definitely a dreary day for the little boy.  Ideally, he'll get a great night's sleep so that Mum and Dad can play with him a little more tomorrow.

You oughta be in pictures.

There isn't much that is new today, so instead, please enjoy a photo entry full of cuteness.

Maximilian is his own man.

Max had a pretty good day.  Mum got to hold him the first time around. They cuddled and interacted and had a great time. Not much has changed with him, so this lovely bit of interaction was the same as it has generally been lately. That is to say that it was full of cute faces, big eyes, an expressive mouth and a whole lot of fun.

Max's cuddle time with Dad was great as well.  Max really seems fixated on Dad's large eyebrows and he enjoys interacting with him just as much as with Mum. This time, Rafael also learned that Max is going to pretty much be in charge of everything.  Generally, when Max is sleepy, Rafael and Brienne can stroke the area above Max's eyebrows to put him to sleep. Today, however, this same relaxation technique was not something Max wanted. He simply did NOT want to sleep. Instead of the stroking being met with dozy eyes and a relaxed demeanor, it was met with a beautiful look of Max ready to cry.  He dictates his own schedule.  This is a lesson that was definitely driven home today.

Cuddles for everyone.

Max had a great day again. He kangaroo cuddled twice with Mum today.  Each time was different. The first time, he was active and happy the entire time. He was watching Mum, Dad and Vóvó and holding their hands and being generally cheery with everyone around him.  The second time, he was a bit more ornery; he just couldn't get comfy and seemed to have a lot of tummy troubles.  Still, he and Mum had a good cuddle. At the end of it, we put him down in his bed and he fell asleep almost immediately after we changed his diaper. He really is simple now.  He just wants cleanliness, warmth and love. Luckily, we can provide all three of these things in mass quantities.

Back to his old self.

Today was a good day for Maximilian.  They removed the heliox, which means that his only tube was the feeding tube in one of his nostrils. He didn't like the moment it took to slip that in, but he didn't seem to really care that it was there too much.  He was breathing beautifully, and was quite relaxed all day.

Mum got to kangaroo hold him twice today. The plan is for her to make up lost time this way as it's a very good way to get Max relaxed and growing. The first session saw Max being a very energetic baby. He was looking around, grabbing at things, and staring at anything that caught his attention.  The little guy was excitedly rooting around looking to feed with Mum. Max was really excited for the idea but didn't seem to actually like anything being in his mouth. It will be a few days until he's less gun shy about his mouth region.  Still, that was a great time with Mum.  We got to look into his lovely eyes for so long and it was great to see him happy and enjoying his surroundings.   The second holding session had Mum holding a very sleepy, dozy 3540g (7lbs 12.6oz) Max for a while. This time, he was less enthused about what was going on around him; he had gotten his fill during his 3 hours of wakefulness earlier. Dad read to him, and he slept peacefully until he needed to be changed.  At the end of the night, Mum and Dad placed him in his crib and kissed him goodnight.

If it quacks like a duck, it isn't Max.

Maximilian is driven. He has a sense of the way he wants his world to be, and seems to understand the obstacles in his way that prevent it from being his way in its entirety. The latest thorn in his world has been his intubation tubes.  Not fully understanding that they are there to help him, he detested them with his entire being. The nurses and doctors had to bestow calm upon him by narcotic means as much as possible, just so that he'd lose the will to fight his oppressive contraptions.  Be that as it may, he still managed to squirm and wiggle and paw at the diabolic plastic piping with a hate ridden, fervent ichor coursing through his body. But, even with these strong sleep-inducing nectars affecting his fight, the little guy still managed - with what we imagine to be some heroic music playing in the background - to extubate himself while the nurse wasn't looking this morning.

The nurses hummed, hawed, and scurried to see just how bad Max's decision was.  In the end, though, he was doing pretty well. His lungs did what they needed to do. They filled and emptied rhythmically, his pacing being regular and strong.  To assist a bit - in order to prevent a relapse, really - they brought out a tank of Heliox (80% helium, 20% oxygen) to pump through nasal prongs into his nose.  He can breathe. Mostly on his own. This is a good thing. A great thing really.

Now, his parents are no fools; we know that not all circumstances are permanent, and we know that some steps forward are negated at times.  We got to hear him cry today. It was a hoarse, rough-around-the-edges, little cry, but it was not the duck-like sounds he'd made before. For the first time in our lives, we got to hear our boy sound like a small baby should. We're putting today in the "Win" column.

No real changes here.

Maximilian had an ornery day. He was cranky and fussy for a good part of it.  When Mum and Dad got there, though, he was far more calm then before.  He got to visit with his vóvó for a while and they held hands, talked and played for a while. Afterwards, Max, Mum and Dad all had a lovely time just hanging out and enjoying each other's company. When his parents left, he was sleeping away with little smiles creeping up every few minutes; his dreams must be fantastic.

He's No Match for Dad, Either.

Max was extremely angry when we got there.  He had his eyes examined today which means that he was a bit light sensitive and that he was generally grumpy because of it. The nurse was doing a great job single-handedly wrestling with him and his 3420g (7lbs 8oz) body.  Eventually, she had to wrap him up like a mummy so that she could hand him off to Rafael for a cuddle session.   Almost immediately - and with a herculean grip on Rafael's finger - Max relaxed and was carried away into the Fields of Slumber.  All the while, Mum read him some stories, stroked his hair and reminded him that he was loved. This went on for quite a while until Max decided he needed changing. Once he was cleaned up, he fell right back asleep and his parents left him all bundled up in cuteness.

"My name is Max, and I'm a drug addict."

Max had a restful day, thanks in part to the sedative cocktail they have him on.  Plainly speaking, he is rather aware of the tubes down his throat, so it's an unfortunate necessity to have him a bit less "edgy" until his extubation date.  The antibiotics seem to be doing what they're supposed to; he has less "gunk" in his throat, and seems to be making a few more sounds than before. And yes, they are cute little sounds. Ideally, he'll continue to improve and the drugs will help him stay calm to prevent him from tearing the tubes out on his own until that eventual day where they're gone for good.

Until then, Max will continue to get his fix.

He looks like Dad when he sleeps.

Max had a central line put in today to replace the multiple IV's he's had recently. To insert it, they needed to sedate him. He's very cute when he's sleeping. There wasn't much else up with him today. He simply slept and slept and slept and breathed and breathed and breathed. His parents had a nice visit with him and enjoyed petting his hair while he slumbered.

The NICU needs to hire a stylist.

Max had an even funnier haircut than normal today. In trying to find a site for his IV, they shaved his head even more now.  It looks awful, but he doesn't seem to mind it. Maybe he enjoys sporting fashions that signify his uniqueness.  Either way, he's adorable.

He was in great spirits today, which was great for Rafael's mood.  They cuddled for a while while great-aunt Shelley visited. He was alert the entire time and seemed to really relax while in his dad's arms.  They cuddled for an hour or so before Max decided he needed to go back into his bed. Once back in there, he settled beautifully and was starting to doze off once Mum and Dad kissed him goodnight.

More plans, more waiting.

Max is doing as well as he can be right now. He's still intubated, and will probably remain intubated for a week and a half still. The current "plan" is to give him so more antibiotics while keeping him intubated in the hopes that his extubation in the future will have that much more of a chance at being successful. This will probably mean having a central line placed instead of a more temporary IV. Max will not like this. Ideally, they will extubate him as close to his next scope date as possible.  Ideally, this will all go according to plan, and Max can be rid of these darn tubes soon after these things are done.

What Maximilian does enjoy are bathing and cuddling. When we got there, we got to bathe him. Again, it took four people, but again, Maximilian enjoyed the time beautifully.  He really does love bath time.  He didn't so much like it when we had to lift his chins to get at the little hiding creases around his neck, but he liked the entire process overall.  Afterwards, he and his mum had a lengthy, drowsy snuggle for quite some time. Max fell asleep as he made Brienne's arm and bum go numb from her holding position. The arm falling asleep was definitely because of his increased weight. He weighed in at 3290g today (7lbs 4oz). He definitely carries most of his weight in his face, although his thighs and arms are chubbing up quite beautifully as well. All in all, he was in a great mood today and it was a lovely time spent.

Max, the expressive baby.

Today was an interesting day with Max. There were two visits. The first was a very nice, calm, relaxed visit with Max. He was a bit dozy, and was on his best behaviour.  He didn't fuss much during his change and his feed put him to sleep like it usually does.  The second visit had Max not so well behaved.  He disliked his tubes, disliked his diaper, disliked his position, and basically just kept squirming and fidgeting while trying to get comfortable. Dad got to cuddle him and Mum got to read him most of a story during this time. The little guy was a bit cranky to begin with, then got crankier near the end,  so story time had to be cut short so that he could be put back to bed.   Once there, it took him a bit to get settled, but eventually he fell asleep and reverted back to cute, chubby, serene Max.  It's nice to see him run the gamut of expressions and emotions. Max is definitely one to let you know exactly how he feels.

How many people does it take to bathe a baby?

When there are breathing tubes involved, the answer is "4".  Max had a lovely bath today. Once again, it proved to be one of his favourite times as he was calm and collected the entire time. Even when Dad had to clean under his neck folds.  It was a cute, serene time that was enjoyed by all involved.  Afterwards, he fell asleep in his Mum's arms as Rafael read him some stories about lost penguins, baby stars and wayward Martians.

Max was doing well today.  The machines used to ventilate him aren't doing much.  Essentially, the breathing tube is being used to stent open his airway in order to allow the right amount of oxygen into his lungs. This is a good thing in disguise as it means that his lungs are still doing their thing properly. Also, he's making some vocal noises, which means that the breathing tube has more "give" around it than before. This is a decent indicator that the swelling isn't as constrictive as it was a few weeks ago. They are talking about trying to extubate him again in a week or so. Ideally, this time will work out, but we're not discounted the possibility of him needing to be intubated for a bit longer after that.  He is still doing such great work though, that we're proud of him in a million different ways.

Max and His First Thanksgiving

Today, Max was wonderful. He was breathing at room air all day, and was generally calm for the majority of the day. He had a few little cranky  moments here and there, but nothing unusual for a child with plastic pipes coming out of his mouth.  He and dad had a lovely cuddle as Max had his pumpkin 'cheesecake' via Mum's milk.  It was a lovely day for the lovely boy.

He had his weigh-in today and came in at 3240g (7lbs 2oz).  He also had his eyes checked, and they were looking improved.  All in all, medically speaking, other than the obvious airway size issues, Maximilian is a beautifully healthy 1 month old child.  Mum and Dad are thankful for this.

A lovely evening with Maximilian.

 

Maximilian was absolutely wonderful today. He was calm, interactive and composed throughout the majority of his visit with Mum and Dad.  He no longer has an IV anywhere in his body, so his movement was a bit less compromised than it had been recently.  His poor little head looked like the victim of some frat hazing, however, as he had some lovely little bald patches. His hair had been shaved prior to his IV being placed in his scalp. It looks cute, if a little "punk". His breathing tube was bothering him less, and he was generally bright eyed and interactive with his parents.

Mum got to hold him for a while and it was a lovely, calm hold. Max stared at her for a while until he fell asleep.  He's getting to be a heavy boy now, and he feels so big in her arms.  He's beautiful, and wonderful.

Today was a great day with Max.

Like a little Friar Tuck.

Max now has a funny haircut.  Because of all of his squirming, his IV lines have a hard time staying in place. They generally don't like putting them in the same area twice in a row, so today's was placed in his scalp.  This meant a bit of a shave and now he looks like a little, chubby friar.  Despite this, he had a reasonable day.  His incisions have healed nicely and he's been on PSV at room air the majority of the last little bit.  He was actively staring at mum and dad today and did his best to fight the sedatives making him drowsy.  In the end, the sedatives won out and he was dozing all cute and snug at the end of the visit.

A kink in the line.

Max has great lungs. They know what to do, and they work hard at the whole "breathing" thing. Regardless of that, his throat refuses to allow enough air into them so that his body can work at its optimal level.  They tried to extubate him today. He struggled too much with getting in enough oxygen - again, his lungs were doing the right thing, there was just a physical blockage preventing them from getting enough of a flow going.  In the end, they had to re-intubate him. He had a long day.

His anger is no match for his Mum.

Max really doesn't like being poked.  Today, Mum and Dad got to participate in an IV insertion. It seems that Max wiggled so much that the one in his foot didn't stay put.  He makes a very cute angry face - but Mum was very good at making him relax; it seems that he loves having Brienne pet his hair. It turns him into this lovely, chubby little drool factory. He's doing well enough, considering he's still on antibiotics and still on a ventilator. He is alert, though. He and his vóvó had a good little time holding hands and staring at each other for some time. It's nice to see him so aware of his surroundings, even when he's obviously uncomfortable and somewhat confined by all the tubes he has attached to him in some way or another.

He was weighed today and came in at 3200g (7lbs 1/2oz-izh).  This puts him in the 7 pound club, which is phenomenal. He is still kind of short, but the boy carries a few chins, which is awesome.

Maximilian and the Squirmy Worm

Max really dislikes tubes. Today, he decided that he needed a lot of exercise in the form of wiggling, flailing and generally squirming like the wriggliest worm possible. He was quite adorable in his anger laden flailing, but it brought up some stuff that needed to get suctioned. This led to more wiggle dances and the need for more suctioning.  Once he finally had his throat cleared for him, he was far better and calmed right down.

He seems quite active, alert and as happy as he possibly could be in this situation. He's progressing along nicely and his ventilation settings have been modified so that he's in more control of it.  Ideally, this will progress well enough to the point where an extubation will be both soon and successful.

In other news, our boy is getting quite tall/long. He came in at 48cm (19in) which means that he's grown a few centimeters or about an inch and a half since his last measurement. Apparently, the majority of his growing seems to be mostly in the cheek and chin area.

That's a fine cocktail.

The results have come back from the cultures that were taken from Max's throat. As a result, his cocktail of antibiotics have been adjusted so they are tailored to the specific bacteria that is growing in him. He's being treated with two antibiotics - one to treat the MRSA, and another for pneumonia, which is the culprit making a pus-filled, inflamed mess of his throat. Once this medication has been given a chance to start working - 48 hours - they may try to extubate Max if things look promising. They may also start a round of steroids for swelling if they think at that point that the antibiotics need a little help to take the swelling down in order to help along the extubation efforts.

We discovered today that Max had been given the week off from his usual eye exam, as they've decided that in light of the improvements shown in his eyes, a follow up in two weeks, rather than the usual one, was in order. We're pretty happy about that, as we're sure Max is.

Otherwise, Max is resting up and continuing to eat and grow big and strong and extra cute.

And now we know a bit more.

"A bit" is the part of today's title that deserves focus.  They did Max's scope today. He did very well and was a great patient. What they found is that this vocal chords are surrounded by a lot of swollen, pus-filled, infected tissue. This is not surprising. Everyone involved always assumed that his breathing issue was due to a physical constriction of his airway. Now, they know for sure that his airway is being choked by some pretty impressive swelling.  We now have three things attacking the issue though: antibiotics, steroids, and time.  With all three powers combining, they hope to see Max's airway loosen up so that it can continue to develop stronger and better over time.  What they don't know is what the swelling and infection are possibly hiding. His vocal chords were definitely in stasis due to this condition. They don't know if any other types of damage are present there, and they don't know if they'll have to intervene in other ways further down the road.

In a few weeks, they will re-scope him and possibly use some surgical techniques to further enlarge the airway. Until then, we just have to wait and hope that the antibiotics and steroids will do their job.

Today was a long day.

A calm evening.

Today was a calm evening. Max had to be sedated slightly due to his busy hands, but he and dad had a great little cuddle where Max relaxed and managed to fall asleep for a while in his father's arms.  It was a nice time had by all.

Tomorrow is the scope. They've changed the battle plan slightly; instead of having the whole team of surgeons ready, they will just be doing the scope with the only plan being to examine what's going on. Should they find something that requires surgical intervention, they will then book another appointment for said surgical intervention. This is doing wonders for anxiety levels.

Small, necessary things.

Human contact is essential. A lot of people go through large stretches of their lives without hugging another human being. We do not want this to be Max's life, so today was a cuddle day for him and his mum. Even though he's got all these tubes sticking out of him, and even though he has to be positioned just so in order to be comfortable, she cradled him in her arms and let him know that he's safe and loved.  He enjoyed this immensely. He had his eyes open for a while, stared into his mother's eyes and was at true peace and rest - the first time in almost a week.  It was a great little moment.

Not much else has changed with him. His post-op healing is going very well. His "bits" look bruised, but they look like the bits they're supposed to be.  He's still chubby, still beautiful and still amazing.

The waiting is the hardest part.

There isn't really much to report today. We're all really just waiting it out until Monday when we can find out what is causing Max's breathing complications and find out how the doctors want to proceed with his care.

Max had what appeared to be a slight fever earlier in the day, so they sent off some tests to check for an infection. His temperature has since come back down, so it seems as though it was just temporary.

Max seems to be relaxing slightly and is requiring a little less sedation to keep him calm, which either means he's in less discomfort from his surgery or he's getting used to the tubes again - or a combination of the two. His parents on the other hand, will not relax until Monday when they can find out what to expect next on the NICU roller coaster.

Max is a Man with a Plan

Not much has changed with Max today. He is still stoned off his gourd, and is therefore sleeping the day away. He is still intubated, and will remain so until at least Monday. His scope and potential throat surgery are scheduled for the afternoon on Monday.  Once again, he will be chauffeured to HSC and he will undergo all the procedures there.  It's good that Max has a plan now, and that - whatever the issue - it will all be made clear and any problems will be addressed properly.

Now for some good news. Max is fat. He officially weighed in at 3150g (6lbs 15oz(ish)).  This weight is most likely off slightly due to the ventilation tubes and possible water retention from having an IV in for a day. Still, that's an increase of 220g, and if 10% of that is "false" weight, then he's still a little porker. The other bit of good news is that he had another negative MRSA test. This is only the first since his last course of treatment, but hopefully it'll stay gone and we can stop wearing those horribly hot gowns.

Trying to find silver linings.

Max was angry today. He pulled out his intubation tube and they tried him on CPAP for just under an hour.  His lungs are doing exactly what they should be doing. Unfortunately, his airway was too narrow to allow for the right amount of air to enter.  So, the infernal tube went back in.

His incisions from the surgery are looking really good. His surgeon came to look at him and was pleased with the healing and how the surgery went.  He was not so pleased with the need to be re-intubated, but nobody really is.

The silver lining here is that we know now that his airway is narrow.  Knowing now is ideal because we can take care of it while he is still being looked after by very good, very professional medical staff.  Not knowing this could have led to potential complications in the future should Maximilian contract a cold or have any other type of ailment that led to his throat swelling slightly. Despite hating seeing him uncomfortable and angry, we would rather have this than having a crisis in the future where his ability to breathe becomes extremely compromised.

Can you spot today's word of the day?

We went to see Max today (obviously).  He is still intubated. He will be intubated for a while.  When they had to intubate him during the surgery, they couldn't get the first tube in as it was too large for his whole airway. This was seen as "interesting" due to the fact that it was the same size tube he had had previously. Essentially, there was still some physical narrowing of his airway below his adam's apple.  They don't know exactly what the issue is, however.  It could be scarring from previous intubations, it can be a physical narrowing of his airway due to swelling or some hiccup in his development.  It's impossible to tell without performing an actual scope to see what's going on.  Because of this unknowledge, they are keeping him intubated until the very moment before a scope gets done sometime in the next 7 days.  The current plan is to have the scope done with all the necessary professionals there so that, if some sort of surgical intervention is necessary, then they will be able to do so at the same time.  The idea is that this way, we will know for sure what the issue is. If surgery is needed, when it's needed and we'll know and have it taken care of immediately. If he just needs to grow, then we'll know that too without having to question it in the future. Until the scope, we get to watch Maximilian squirm, cry, frown and grumble at the horrible tubes shoved back down his throat.  We can only hope that "sometime" within the next 7 days is sooner rather than later.

A quick post about the surgery.

Today was a long day for Team Santos.  Max`s surgery didn`t start as early as was scheduled, and it went a bit later than initially estimated. Nothing went wrong, and Maximilian is doing very well. He's a bit uncomfortable and stoned off his rocker, but he's resting well. They had to re-intubate him due to the anesthetic used, but this should be a temporary requirement as they will ween him off in the next little bit. The next few days aren't "troublesome" per se, but he will be closely monitored for any issues that could potentially come into play.  For now, however, the surgery seems successful and we honestly couldn't have asked for a better group of medical professionals to see to Max's care.  We don't mention them by name (mostly due to their right to privacy) but we can both honestly say that the staff at St. Boniface are beyond professional and extremely good at the various aspects of their job.  The main reason Brienne and Rafael generally seem "calm" with all of Max's happenings is because of the staff (and, let's be frank, the nursing staff there is especially amazing) and their confident ability to do their job while keeping us informed and teaching us how to take an active roll in Max's care while he stays there.

He was weighed today and came in at 2930g (6lbs 7oz). He will most likely not gain too much more weight before his next weigh-in as he'll have limited intake for the next few days.  

Today was a long day, but we're proud of Max and are glad that the biggest procedures are all out of the way.

Visitors - a week in photos.

Max's parents - if you know them well - are procrastinators at the best of times. Never the less, here are some recent photos of Max and some of his visitors. More photos soon with features such as: "Adventures in bath time", and, "Max and the bottle!"

Max and Grandma

Max and Great-Grandma

Bye!

Gotta remember to get under his neck rolls.

Max is chubby.  You have to lift his chins to get to his sub-chins to clean his neck thoroughly while bathing him.  He loves bath time. He breathes so peacefully, just kind of lays back and lets us clean him.  It's not like he's a little terror otherwise; he's always quite relaxed. Bath time, however, is always so pleasant with him. Even the nurses seem amazed by just how much he seems to love it. It has definitely become a highlight of our week. Also, he's really cute naked. His rolls are coming in nicely and he has plenty of cute fatness to giggle at. It's wonderful to see that he has such a cute little baby bum. When he was born, he was so fat-free that he even lacked the bum crease. Seeing him come this far is such an interesting pleasure.

Today was a great Max day. Everything about him was great today. He bottle fed well, he breathed like a champion, and he cuddled like the cuddliest little teddy bear. It was a wonderful day.

You can set your watch to him.

Max was - as usual - wonderful today.  He bottled a whole bunch and took in anything from 10ml to 28ml at various times throughout the day. He was quite active and interactive and his parents and great-aunt had a great time visiting him throughout the day.  His breathing is spectacular, his heart is beating well and everything - other than the feeding tube in his one nostril  and his extra large nethers - makes him seem like a normal, bouncing baby boy. Apparently, he can also tell time.  He gets very cranky when he knows it's supper time and has a fun time wiggling his way around the bed to let his parents and nurses know that it's time for food.  He's adorable and funny in his hunger crankiness and takes to the bottle like a madman when he finally gets fed.  It's great seeing him with so much vigor.

Dozing on a rainy afternoon.

When we saw Max today, he seemed pretty content just sleeping to his heart's content. He didn't do much today.  Well, he did some stuff. He downed 30ml in one sitting earlier in the day and did at least 10 for the remainder of them. He only had one or two "episodes" which lasted very little time and were barely worth mentioning.  Today was just one of those lazy, rain-filled afternoons for the little guy.  Hopefully, he'll continue to rest up as he's going on a bit of a trip on Monday.  The transport team will be picking up at 8:30 to take him to Health Sciences Centre. There, they will operate on him to repair his hernia issues.  We'd be lying if we didn't say we were a couple of nervous parents. We know that Max has gone through so much already and has done so well. We know that his last bit of surgery was more extreme than this one. We know all this, but we can't help but be nervous with such a eventful day ahead of us.  The surgery will be quick and he'll most likely be back at St. Boniface later that day.  Until then, we'll make sure to give Max a few extra hugs and try our best to prepare him for Monday.