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.

A good, clean bit of fun.

Max no longer really fits most preemie sized clothing and definitely fits into newborn outfits a lot better than before. This probably has to do with the fact that he's at 2836g today (6lbs 4oz).  He's getting quite large and, other than the whole "feeding" thing, looks and acts much like every other tiny newborn we've ever come across.

Today, Mum and Max attempted to breastfeed again. This time, Max got a bit of milk we think. He had that very wide-eyed, quasi-surprised look he gets when he swallows, so we're pretty sure it happened.  With that said, he also bottled at other times of the day for 20-22ml of milk each time. This is amazing for him as it makes up around one third of his scheduled feeds, and puts him that much closer to eating everything by some sort of nippled thing.

We bathed him again, and he was such a lovely kid during that whole time. He really does seem to enjoy being bathed, even when we had to clean his ears.  We look forward to all the future bath adventures we'll be sharing with the butterball.

Max, Rafael and the bottle.

Max is spectacular. Dad had a cuddly time bottle feeding "o pequenino." He's getting much, much better at bottle feeding and is learning to pace himself when he knocks one back.  He still attacks the bottle like he has 3 seconds before it disappears, but he's doing a much better job with remembering to swallow and breathe in the middle of it all.   He's been doing so well that they've begun feeding him by bottle whenever he seems to start rooting. He's still getting the same amount every 3 hours but they're letting him set his feeding pace a bit more.  This brings him closer to the way newborns act, and will let him set his own instinctive rhythm in terms of feeding.

He had his great-grandma visit him today.  They hung out for a while and Rosemary had a lovely time singing and talking to the little one. It's nice that Max has such a lovely, multi-leveled family to love him.

Max's parents promise that there will be some visuals added to this blog very soon.

Patience will be needed.

We hung out with Max twice today. The first time was a great little visit where we got to show a lactation specialist how amazingly good Maximilian is at the entire concept of breast feeding.  We were a bit worried that he may have to rely mostly on a bottle in the future but were reassured that he is learning the skill quite well and that we can expect him to catch on over time.  It may be a slow process, but he's showing a lot of progress all the time and we're excited to see him grow bigger and stronger so that feeding will come more easily to him.  The second time we saw him was just for a cuddle party. Mum and dad were playing a bit of Musical Max, passing him back and forth and he had a great time until it was time for him to go to bed.

He had his eyes open a lot today. They're wonderfully big, blue and they have a lovely shine to them.  We will be taking many more pictures soon, so there will be visual updates shortly.

Bath time is calm time.

Rafael and Brienne had a great time with Maximilian today. We got to bathe him all by ourselves (with a nurse's supervision).  He was extremely calm the entire time and seemed to actually enjoy the majority of it. He didn't even mind when daddy had to lift all of his neck folds to clean at those well-hidden, extremely hard to reach spots.  Then, Mum got to hold him skin-to-skin for a while.  Max slept like a baby should: peacefully and still up until the moment he spit up all over his mum.  He didn't panic or anything either. He just looked around and calmed down immediately. When he got back into his bed, he fell asleep quickly and was dozing wonderfully when his parental unit left.

He was weighed again today. He's up to 2762g (6lbs and 1oz). He's quite a large fellow and barely fits any preemie stuff anymore. Most of his preemie outfits will be donated  to the NICU at ST. B as they definitely need all the clothing they can get.

His eyes got checked today again. They're better than last week, but still need an updated checkup for next week. Now that he's off of the oxygen tubes, he's more likely going to have his eyes get better and better.  They've started him on his MRSA treatments again and will be moving forward with his hernia surgery next week, regardless of how his MRSA tests come back.  This will be great because, after that surgery, the only real thing Max will have to work on and improve is his eating.  Ideally, the entire concept will "click" with him fully soon and then we can bring him home to meet his feline companions.  We're both just dying to see how confused Nin*Dja and Kenya will be with a little Max hanging out at home.

Max and the boring day.

Today was another good, boring day with Max. He and mum cuddled a whole bunch and he wowed us with his inability to stay still. He is a squirmy little fellow and he makes changing time a bit of a wrestling match. It's amazing just how much resistance his little legs can provide.

On all fronts, he's doing well.  He is bottle feeding more and more. His minimum per feed now is roughly 9-10ml whereas it used to be 6ml.  His breathing is still really good and he seems to be developing well. All the nurses that have been with him since day 1 are very impressed with his progress. The loose goal for this upcoming week will be to increase his feeds as much as possible as well as have him maintain his breathing better. He hasn't had any real issues, but if he could dip fewer times below 85%, then there will be THAT much less worrying when he finally comes home. Ideally, that would be sooner rather than later. The reports lately, however, indicate that he's spending 90% of the time with his oxygen levels in the 90's which is fantastic, and right where he should be. It all seems to be coming together, right at Max's own pace - just as it always has.

24 and then some

We arrived to a very cute Max underneath a whole lot of blankets. Originally, they were not covering him up as fully as they were when we got there.  Maximilian is very squirmy, though, and managed to build himself a little blanket fort in which he slept like a drowsy little prince.  He was still without any breathing assistance and officially made it past the 24 hour mark.  The actual amount of time is unknown, however.  His breathing tubes spent a lot of time out of his nose, and - even when they were in - were not necessarily offering him much support;  as it turns out, they were clogged and weren't actually letting air through anyhow.  So, he's been doing really well.

Vóvó got to hold him today and he did really well with her.  He didn't open his eyes much, as he seemed a bit tired this time around.  He did, however, go through all the facial vocabulary he had. He made every type of face he could and Vóvó enjoyed them immensely. They had a lovely time and she held him until he needed changing. There will be many more chances for holding him again in the future, so it was nice that today was such a nice start to it for the two of them.

There is not much else to report. Max is still bottling once a shift and generally does well with it. He had a few dips earlier, but nothing much to worry about. As he gets stronger, bigger and more used to the idea, we expect him to down his milk like the best of them.

Projected success.

We got to the NICU and saw our little guy curled up and sleeping.  Rafael noticed a big red mark on the little guy's cheek and, upon investigating deduced that the mark was left by the removal of some waxy substance. This substance was used as a barrier between skin and tape. The tape was used to hold in place some breathing tubes. And the tubes were gone! *cue dramatic chord*

Max had been breathing by himself since an hour or so before noon and was keeping it up nicely throughout the day. He even maintained his oxygenated composure when he projected some spit up past dad's arm and into mum's lap.  This happened a few minutes after his parents watched Max down 14ml of milk from a bottle. He's quite cute with the excitement he shows toward drinking from the bottle.  Sometimes, he takes in more than he can swallow, but he's getting quite good at the whole suck-swallow-breathe rhythm.

Today was a day of very visible steps forward.  Max has been doing so well and continues to amaze us that we may have to start inventing words to properly state just how amazingly proud we are as parents. We are positively ebullient with his continuous improvement.

The GD MRSA can DIAF

Max had one last visit from his grandmum today before she set off again to her Floridian home. He was very drowsy, but they spent a few good moments together before her departure.

Today, he was weighed again and came up to 2670g (5lbs 14oz).  The gain was a bit lower than they want to see, so they're adding some chubbifying additives to his breast milk for a while until he starts on-demand feeding. This will happen when he's more comfy with the bottle and breast. When he's at that point, he'll be eating however much he can whenever he gets hungry. That's generally when babies start to really increase in weight. Right now, he's still successfully bottle drinking a bit of milk every shift.  He can take in anything from 6ml - 11ml at a time, but it still takes him a lot of work to coordinate the sucking, swallowing and breathing.  It's still progress, though so we're quite proud of the little guy.

The bad news today was that his MRSA is back and they're going to start treating it again soon enough.  Ideally, this will be the final course of treatment for the horrid little bug.  It's still not affecting him in any tangible way, but they want it gone once and for all so that there are fewer possibilities of complications from it in the future.

Boring is awesome.

Max was cute today. Rafael held him while Max's great-uncle Lee hung out for a bit.  It was a quick visit, but Maximilian enjoyed the time he spent with Lee and was very nice and even waved at him before he left.

He took 8ml, 10ml and 6ml of breast milk by bottle at different times throughout the last 24 hours. This is ridiculously good and we're very proud of him for handling that much so quickly. Hopefully soon, he'll be taking most of his feeds this way. Until then, we'll have to just hold him and cuddle him all the same so that he knows he's loved and adored.  There's not much else to report. He's doing very well and his chin's chins have chins. It's amazing seeing him grow so much and be so baby-like. Babies are essentially boring in their awesomeness and as Max becomes more boring, we become more relaxed with the way he is, and the special circumstances of his seem less unusual.

It's lovely that we're in the "boring" phase again. He's growing so well and dealing with his world so beautifully that we don't worry much. We are both enjoying the fact that we're not really worrying so much about him anymore.  He's fat, active and cute. That's pretty much what all parents care about at this point, so we're loving every aspect of it.

I don't want to. Ok, Maybe I'll try just a bit.

So today, the occupational therapist tried to get little Maximilian to drink some milk from a nipple again.  He did not like it and barely took any into his mouth and seemed to struggle a bit with the swallowing. It is still a function that Max has to think about, so it takes him a bit of effort to manage a full swallow. Even though he seemed done with the idea, the OT tried again - this time with a nippled bottle.  Max managed 6ml of breast milk.  This is a HUGE step for him. It took him some time, but he seemed to manage quite well before he was tuckered out from it. The next little while will be all about bottle training the little emperor. They'll start him off slow, but hopefully he will gain the skill and comfort needed to become entirely bottle-fed within the next little bit. Again, Max has shown that he's kind of awesome and his whole family is quite proud of him.

The visit with him was good today. Grandma Ellen hung out with him for a while and Max was alert and interested in everything around him.  Mum and dad had a hard time saying "bye" to him at the end of the visit as Max was staring and touching and making lovely faces at his parents. His big, round, dark blue eyes were fixated on Dad's face and he kept placing his lovely little soft hand on Rafael's face.  It was beautiful seeing him so energetic and interactive.  Again, we are ridiculously proud of our cute little butterball.

Coo Coo Cachoo

Max was doing very well today. They had tried to get him to breathe without the assistance of the oxygen tube for a while.  He did reasonably well for 1.5 hours, but then they put him back. The issue isn't that he can't get up to the 88% required to be considered stable.  The issue is that he dips too far below it, too often,  and has to fight to get back up there. He needs to build up his strength a bit so that, if he does dip, he'll be able to bring his oxygen levels back up quickly and without wasting too much of his energy.  It's important to keep in mind here that normal newborns do the same thing; they dip and hold their breath, turn funny colours briefly, strain for air, and do all sorts of things that would make any number of medical alarms go off. When it's a preemie though, you want a more stable baseline to make extra sure that they're capable of bringing themselves out of it.  And tiring out a preemie simply isn't a good idea.  They basically need to be not unlike an adult at a high end spa.  They want all their needs attended to without having to work for any of it.  So when Max is at a good baseline, he'll still dip, and still struggle every now and then; it will simply be less often and more on par with "regular" babies.

While his loving, doting, smitten father was holding him, Max took another few tries at swallowing some milk while he sucked on his soother. Despite still having a bit of that "What the heck is this?" face after the initial injection, he seemed to swallow the milk quite easily and kept sucking at his soother like a champ.  It's quite enchanting to see him work that soother like a cartoon baby.  His suck is great and he's slowly building up his stamina to be able to do it longer. Pride isn't a strong enough word to describe what his parents feel for him in regard to this (and all other) step(s) he's taken.

He was weighed this morning, and came in at 2640g (5lbs13oz) which is a good little increase. We're pretty sure all the added weight is hiding under his chins around his neck.

The surgery that is supposed to happen on the 17th will most likely be postponed until after he is "officially" clear of his MRSA issue. This means that he'll be at the hospital til the 27th at the very least. The reason for this decision is that MRSA has the potential to become problematic with surgery.  It can either infect the patient, or it can potentially contaminate the surgery area itself.  Either way, waiting is a smart choice and the hernia isn't causing any real issue.  In fact, we were told that the size of his scrotum is a "good" sign in that it means the intestine has the ability to move in and out of the area freely.  A smaller hernia would be more "pinchy" and would be a bigger cause for concern.

Today was a great Maximilian day. He is adorable, as always, and makes the cutest little cooing face when he greets his parents.

Swallowing is hard work.

Today marks our 100th day in the NICU!

Today was another good day with Max. He had his oxygen very much under control and he only seemed angry when he needed changing. His poor little bum has a bit of diaper rash on it, making him more sensitive during his changes, but he seemed otherwise comfy, happy and alert today.

His Papá got to hold him first today, and during this holding time, Max showed his parents that he was capable of swallowing a little bit.  His nurse filled a syringe with a tiny amount of breast milk and squirted a little into his mouth while he was sucking on his soother. It wasn't a lot, but it was enough so that he needed to swallow it, lest it affect his breathing. Max "got it" after a few seconds after each injection. It was quite obvious that he had to very deliberately swallow, but he swallowed all the same. It obviously took a lot of effort, but he kept on keeping on and we were very proud of his work ethic. Hopefully, soon it will become second nature to him and he'll do it without thinking. For now, we'll take these baby steps as a sure sign that he'll get to the point of eating on his own - without worry - soon enough.

Max had a visit today from his Grandma Ellen visiting from Orlando. He was on his best behaviour for her and showed how much he'd grown since he last visited with her. The last time she saw him, he was still bruised and tiny.  He was very proud to show off his chubby face and arms for her. They had a lovely visit and will hopefully have much more time together in the next few days.

Well, he's at least got the sucking and breathing part down.

Today was another day with Max where there isn't much to say other than he's cute and really seems to enjoy the idea of breastfeeding. He still hasn't gotten to the point where he can suck, swallow and breathe - in fact, he's still at the point where sucking leads nowhere in particular.  He does, however, sincerely enjoy being at the breast and latches on with a voracity that's adorably aggressive.  It's quite cute. With preemies, it's often times just a question of their brain "clicking" into the right mode before they suck, swallow and breathe without it being a big issue. He had a great cuddle with his mum today and was doing super well the entire day otherwise. Hopefully, he can maintain his good mood until his surgery on Friday.
Yesterday, he had a hearing test and it went very well. He responds well to voices, and hears well enough to hear us tell him we love him.

Bitter Sweet Birthday.

 Today Maximilian is 14 weeks old. Today is also Max's due date. Once upon a time we were sure that Max would still be curled up inside mum, quite content to float around for a few more days before making his kicking, screaming entrance into the world - when we'd find out that mum's suspicions were right and he was indeed a he. As it turns out, it really is true what they say: the best laid plans of mice and men often go awry. You never plan for something like this, and nothing in the world could possibly have prepared us for the journey we've taken over the last few months. This wasn't the birth story we hoped our child would have, but Max has exceeded all of our expectations and is an inspiration to us. We've had up and down days, but we get up and move on because he does. He's been through so much and he fights his way through it all with a tenacity that astounds us. We've loved watching Max grow and seeing his personality develop. We've watched him meet milestones that most parents won't ever see their children go through. He's an amazing little boy and every day he makes us deeply proud to be his parents. Happy Birthday Max - we love you.

Quiet day.

Our visit with Max today was fairly uneventful. It's nice to have so many quiet days where nothing much happens - it's a little taste of what we imagine having a 'regular' newborn might have been like. He's doing really well, he got some good cuddle time and again took well to the breast.

Max had a visit from one of the feeding specialists today. They tried to offer him a little milk in a bottle nipple. He seemed to have no problem with the sucking, but the swallowing part appears to be something he has little interest in at the moment. Swallowing seems so intuitive, but when breathing is something you've had to learn to do, figuring out how to pause your breath to coordinating swallowing while not choking and sputtering is something of an art to master. With practice Max will learn how to do this too.

Also, Max has received his first negative test for MRSA. The treatment seems to have been successful. Now, we only need three more tests to come back negative and Max is out of isolation. We already kiss him all over and sneak gloveless caresses, but it will be nice to not have to don the gowns and gloves. Of course, we're hoping we won't still be there for another three tests (done once a week), but we're trying our best to leave expectation at the door and take one day at a time. We look forward to Max's homecoming - whenever he decides that will be.

Overall, another great day with our little man.

Pictures as promised.

Well, we managed to get some photos last night while Max was being weighed, bathed, and cuddled. Most of them, unfortunately are pretty blurry - low lighting, excited parents and wiggly baby makes for less than stellar photo taking conditions. But, never the less...here are a few of the least blurry of the bunch.

It's just some mild panic.

We tried seeing if Max would take to the breast a 3rd time. That boy was very excited and latched on like a pro.  He still hasn't suckled to the point of feeding himself - but that wasn't the point of the exercise. He seems to properly understand what he needs to do in this situation and the hutzpah he has shown will go a long way when we have to teach him how to breastfeed when it's to be his only source of sustenance.  It was nice to see him "get it" as much as he does and relieves both his mum and dad a bit.
Today was a good day overall. Other than a small freak out - where he spit some milk up and panicked when he couldn't figure out how to cough it out (Maximilian's panic face is astoundingly adorable in its urgency, by the way!)- he has been breathing really well and seems to come out of his increasingly rare dips faster and faster each time.  He really enjoys the cuddles and just does overall very well any time he's handled now.
He weighed in today at 2590g (5lb 11oz) and was properly measured at 43.2cm (17"). He's becoming quite a big boy and has the chins to prove it.  We had a great time with him today and even got to watch him bathe. He really seems to enjoy that time and didn't fuss at all, even when being cleaned behind the ears.
Tomorrow, we hope to have some pictures up.

Short and sweet.

Max had a great day. He was at room air most of the time and rang his little oxygen saturation alarm very little. They've made it so that the alarm goes off at 87% instead of 84%. This is so that they make sure his oxygen levels are as close to optimal for as long as possible. With these restricted parameters, he was still doing well.  Also, they've increased his feeds by 4ml (to 47ml) in order to compensate for the missing fortifier from his breast milk. This makes him more full - and therefore makes him struggle a bit right after his feeds - but he's dealing really well with it overall and is just a cute, little, adorable guy.  Theres not much else to report.  Except that he's a bit of a tiny fella.  He's at 48.5cm in length, which puts him at just under 19", which puts him at "kind of short".  Which is no surprise seeing as his mum and dad (but especially his mum) are kind of short too.

A lot of boring news.

There isn't much to say about Maximilian today.  Mum had some good cuddles with him today.  We were going to try for some more kangaroo care/breast suckling, but Maximilian simply wasn't in the mood for it. He was a bit cranky due to his eye exams, and this seemed to have tuckered him out pretty well as he fell asleep almost immediately once he was on mum's chest. Overall he was having a great day though.  He had his eyes open for a while, was fairly interactive and managed to be cuter than ever just by existing.  They're back to full feeds, and they've re-introduced his vitamins and iron to the feeds. They're still holding off on re-adding the fortifying formula to the milk for a bit longer; they want to give his tummy time to readjust to normal feeds so that he doesn't have issues with them.  This is all because of the holding pattern they had him in for the past few days on account of the blood found in his stool.  Because of that holding pattern, he also gained very little weight. He's at 2523g (5lbs 9oz) now, which is an increase of a whole 15g.  We're expecting the next weigh-in to be a bit more robust.  So, yes. Today was just another regular day with Max.

Good form.

Today we got in two nice, long Max visits. He's doing exceptionally well today, and he's very happy to no longer have the IV contraption on his arm. He continues to do well with his oxygen set at room air, and they've recently had to stop his oxygen alarms from sounding "happy alarms" because they can't turn his oxygen any lower than it is. In fact, today they gave Max a trial without his nasal prongs, and he went 3 hours breathing all on his own before he needed to go back on for a boost of oxygen. We're quite impressed!

At our first visit today, mum and Max had some kangaroo cuddles (where we snapped another photo for the 'growing Max' series.) This is the time that Max gets his food, so his brain was telling him to root around and find something to eat, despite his food being delivered via tube. So, we figured we'd try him at the breast again and see how he'd do. Max has a really great latch, and is certainly capable of a strong suck, although he tires quickly and is content to suck and snooze while his food takes a more direct route to his stomach. Once he begins taking food orally we'll make a more concerted effort at nursing, but for now, the bonding for mum and son is quite lovely.

At our second visit, dad and Max had a snuggle. The little guy was wide awake and quite interested in his immediate surroundings - mostly his daddy smiling at him and his mummy nibbling his chubby little arms. He fought sleep off the whole cuddle despite his blinks getting longer and longer, he just didn't want to miss anything. Once we got him snuggled back in his bed he finally drifted off to sleep.

And he lifted up his arm, and instead of a hand... he had a cup?

The biggest thing to note today is that Max has been at room air for the better part of 24 hours. This is amazing in the context of him having little food in his tummy; being poked and prodded more often that usual; and having a weird contraption made of an IV line, a popsicle stick, tape, gauze and a pill cup on his one arm.  Despite having no idea what to do with that one arm, Max has been doing wonderfully well.  They've started re-introducing his feeds, and by early morning tomorrow, they will remove the IV feed and have him back up to his full feed amount. An infection of his bowels has been officially ruled out, and all of his tests have come back looking good.  The blood in his stool - although still not something to ignore - is now officially most likely due to the hernia he has and he will have to wait for surgery to have that resolved. He still has plenty of energy and is as active as he can be right now.
Both mum and dad had a cuddle today, and Max dozed very peacefully in both cases.  He seems to be starting to understand who his parents are and it's nice to see him so calm when being handled by them.  Also, he seems to really enjoy having his head stroked softly quite a bit. He smiles and makes such adorable little faces when Rafael does it.

Lots of tests, lots of nothing.

Max was a bit cranky today. When we visited him, he had been without any food in his tummy for 24 hours.  Despite being obviously cranky, he was breathing really, really well. He has been at room air for the last 2 days, except for those moments where he's at his crankiest while being poked and prodded.  His requirements then are still far lower than the 30-40 they used to need to give him, so he's doing quite well.  Today, he has had x-rays and an ultrasound to find that nothing is really wrong with his innards.  They're still giving him antibiotics and waiting for other test results to see if anything is officially "wrong" or if the blood in his stool is simply a result of his hernia or a benign-ish tear in his rectum.  Whether or not this affects his surgery date, we don't know. At any rate, it's important to note that Max is not at all acting sick. Just before they started with all these tests and his fasting, he was at his most interactive, most exciting and most cute.  This gives the medical staff (and his parents) the confidence that he's most likely fine and that the issues are as minor as they can be.

In the next little bit, Max may actually get to go for a trip to have an MRI done at Health Sciences Centre to give him a once over.  Before they do that, however, they want his MRSA issue to be in check. They have started treating him for it with some goop they put in his nose (he does not love that), so hopefully he'll start testing negative for it soon.

He was cute and gorgeous today, in case anyone was wondering.

Double Cuddle

Max had a lot of energy today. They haven't given him his sedative in a while, so he has been far more alert and interactive than he used to be. This is also, in part, due to his gestational age; he's pretty much a "newborn" now so he's acting like a newborn. He looks around a lot, startles himself when he sneezes, makes little faces and indicates when he's hungry.  He's so wonderfully full of curiosity and attentiveness, and it's wonderful to see. Mom and dad both got to hold him today and he responded really well to both of his parents and was doing great with his breathing and everything. And, Mum and Dad both had sore arms afterward as they were cuddling with a gargantuan baby weighing in at 2508g (5 lbs. 8.5oz).
The down side of the day was that his hernia may require earlier attention through surgical means.  Initially, we were given a tentative surgery date of September 17th.  They may make this earlier as it may be causing some blood to appear in his stool. This means that they will want to treat that earlier rather than later. So, they've given him some antibiotics on a prophylactic basis and that they've temporarily stopped his feeds so that they can properly gage the cause and severity of the issue. The one major rule of thumb with babies that's making us more "ok" with this than some people may expect is that he has so much energy and is doing well in all other regards.  He doesn't seem ill, and his hernia is SO obvious, that it would be a big surprise if there was something else going on down there.  Most likely, he'll just have to get his surgery earlier.  After a few tests, we'll have a better idea of what's going on.  
Max is otherwise doing very well and is still as cute as possible. He was a bit crankier tonight, but he'd been poked and prodded enough where we're surprised he wasn't angrier.

Shining Star.

Today Max must have known that he was the absent guest of honour at his baby shower. He was on his very best behaviour today for the occasion. Max got two visits today - the earlier visit with mum and a later visit with mum and dad. Each time we were greeted to the little man with his oxygen set at room air. He managed fairly well through the fussing of his changing and only needed a little extra oxygen during his feed once his belly was getting full - a full belly makes it harder to breath. He's very calm and alert now that he's off of CPAP - so much so that they haven't given him his sedation medication all day. We're very impressed with his progress; he's our little star. If he can keep this up he'll be eating food like a big boy in no time, and I'm sure no one is more excited than him.