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.