Tuesday, August 31, 2010

Nothing beats the real thing.

We went to visit Max today at our regular time in the afternoon.  Max was still breathing well on his own and was very calm when we got there. We broke through this calm soon afterward to change his diaper, but he dealt with it well. The nurses had placed an indwelling feeding tube in his nose, which meant that feeding him today was going to be a lot easier, and with less fuss due to the fact that he wouldn't have to gag on a more temporary feeding tube inserted in his mouth.

Before his feed, we decided that today was going to be a good day to attempt some kangaroo holding with mum. Max took to it very well. So well in fact, that some instinctual part of him turned on and he started moving his mouth and head about looking for something to suck on.  We were thinking of finding the pacifier at first, but the nurse assumed there was no harm in trying to see how he'd take to trying for a real nipple. So, after a bit of encouragement, Max was at the breast, all the while breathing beautifully and sucking quite well.  He wasn't sucking well enough to get any milk, but this was his first time and we couldn't expect that just yet. He did really really well with it and there may have been some tears in dad and mum's eyes. Maybe. Mum and Max cuddled for quite some time afterwards until Max decided that he needed to be changed. The whole time, he was very calm and very settled. He seems to be getting a lot better at everything expected of a baby and he's just cuter and cuter every day.

Monday, August 30, 2010

24hours of Awesome

So Max made it to the incredible 24 hour mark of being off of CPAP.  He has had a few little "moments" here and there - and one bigger moment after he had his eyes examined - but he's been overall well on the new breathing settings.  His oxygen requirements are pretty good, anywhere from Room Air (21%) to 24%. We're very proud of the way he's breathing more like a big boy and doing everything else so well.
He has gained more weight, too. He's now at a whopping 2398g (5lb, 4.5oz).


We had a few cuddles with him today and he responded well to them. He's definitely a cuddle-monkey and seems to really enjoy being held. Well, he enjoys it when he hasn't just had his eyes examined, anyhow. He really does know how to be a cranky little fellow when he's not getting what he wants. When he's left alone though, he stabilizes quickly and stays stable for a long time.  He really is acting more and more like a newborn now and we could not be any happier with his progress.

At the end of the day, the message regarding Max is that he's come a long, long way and he's only getting better and better each day. Also, he looks a bit like the Eggplant Wizard when he holds his breath and turns purple in the face.

Sunday, August 29, 2010

Third time's a charm?



At least that's the expression we're hoping will hold true.

As of 8 pm tonight Max has been taken off of the CPAP and switched back to nasal prongs. He was doing so well on the CPAP with the pressure settings as low as they could go, so hopefully this is the move to nasal prongs that "sticks." Once we got Max changed, clothed, and otherwise cozy, and we left him to rest for the evening he was already down to room oxygen (21%) so he's getting a good start at the very least.

It's always nice to see how calm Max becomes once the large CPAP tubing isn't hanging from his face. We've said it before, but it's such a remarkable difference that it bears repeating. Even when he gets cranky and squirming about, it seems as though he suddenly realizes that he can move his head from side to side and nothing is tugging at his nose and no one is holding his head still. We're quite pleased for him.

We were able to get some pictures of him today and his beautiful chubby cheeks. We realized we hadn't taken any non-face pictures lately, so we also got some of his other developing rolls, and one of the cute little sleepers that mum and dad bought for him.

We've got our fingers crossed that the third time's a charm. We can't help but be proud of him either way.

Saturday, August 28, 2010

Kangaroo? More like Anger-roo...

We visited Max today and beheld  his infinite cuteness for a while before Brienne attempted to engage him in a little skin-to-skin cuddle time. Because of the CPAP tubes pushing and pulling at his face, and because of the feeding tube in his throat, it was very difficult to get Maximilian comfortable.  He was pushing, clawing, screaming, crying and causing all sorts of fusses while being held.  He has adorable little tantrums and is quite a fun little handful. What was interesting here was that, despite him pushing his CPAP tube out of his nose for pretty much the entire cuddle, his blood oxygen was still in the high 80's or low 90's.  This basically means that he's far more able to bring in and store up his oxygen from the air around him than he was before.  It's quite a good sign to see him make such huge progress in his breathing.  Also, when he did have the CPAP in, his pressure settings were as low as they could go.  Again, this is a great indicator of his progress and it makes taking him off of CPAP more of a sure thing.  We can only hope he tries his best and continues to do so well once they actually switch the CPAP off in the future. 

Friday, August 27, 2010

Look at the Cajones on that Kid.

So, today was mostly just a "Max is awesome, cute and resting" day. He didn't do much other than exist in a bubble of cuteness and sweetness.  He's (obviously) still chubbing up and he's still on CPAP. Not much has changed there.
The same doctor that did Maximilian's PDA ligation (Wow... remember that?) came to assess his hernias and we now have a plan to surgically fix the issue.  They are pretty obvious now as he tends to look like he's carrying a small bag of potatoes between his legs. It's not uncomfortable (so they say) but it definitely needs to get resolved sooner or later.
Today was a great Max day. He's still ornery and "active," but we'll still take that over listless and exhausted any day of the week.

Thursday, August 26, 2010

Wild thing...I think I love you.

So, Max has officially busted through the 5lb barrier, weighing in at 2301grams (5lbs 1oz). He has developed some beefy little thighs, and several arm rolls. Never mind the chins - that boy is all cheek and chins.

Today, in addition to his feeds being increased he also started receiving a higher dose of his sedation meds - which, if it is at all possible, seem to have the complete opposite effect on him thus far. To put it politely, Max was a wild man today. We have never seen him quite so rilled up. We were sure at several points that he was going to get up and run straight out of there. It must be quite comical to watch three grown people trying to wrestle with a 5lb baby, but he is such a handful! It was all we could do to keep his hands in check and his head on the bed.
We did, however, have a calm 20 minutes or so, when Brienne tried the first bit of successful kangaroo care (skin to skin cuddles)  since Max has been on CPAP. It was quite evident in this position how much he had grown, as even with his head tucked up under mum's chin, his feet were resting in her lap (or kicking and dancing near the end of their cuddle time). It's so great to see him get so big.

Today was an entertaining visit to say the least, and even with Max's feisty attitude he managed to keep his breathing in check just fine. We have so much fun with the little guy, we just can't wait to get him home.

Wednesday, August 25, 2010

Take two!

We arrived at Max's crib side today to find he was being given his second run at the nasal prongs - yay, freedom! It was very nice to see his little face today, and he seemed very happy to not have the CPAP tubes hanging off of his nose.

Max's second try at nasal prongs  (which, again, just offers him a flow of unpressurized oxygen) has so far been markedly different than his first spin with the new breathing support. Last time our visit was full of big, dramatic episodes, and Max struggled quit a bit to keep his oxygen levels up even while being offered a fair amount of oxygen. Today was very different - he was very stable and was often down to room air; but typically in the 22-24% range (compare that to the 30-40% he required the last time he was on the nasal prongs). The only notable episode he had was when his new feeding tube was put in through his nose - and really, wouldn't anyone protest that? He seems to be really taking to it this time (knock on wood) and he seems much more comfortable too.

We are so ridiculously proud of our little guy. He's just amazing.

We went back to see Max in the wee hours of the morning, as Daddy Santos had the night off.  Max was back on CPAP because he was working too hard at getting his breath.  Essentially, he was fighting for each breath every now and then, and it was just taking too much out of him.  In order to help him with his comfort and energy, they decided that CPAP for a bit longer was a good choice. Although we agree with their assessment, we could tell that Maximilian absolutely hated having those horrid little CPAP prongs back. Still, he was doing well and - other than his little fatty tantrum when we were changing him - he was very stable during our visit. Hopefully the third time will be the charm in terms of getting him off the CPAP.

Tuesday, August 24, 2010

Bright eyed and bushy tailed.

Today was a great day with the little man. Max was the most alert we've ever seen him. We're not sure if it was due to him not receiving his sedation as regularly, or because he's receiving more caffeine, or just because he's getting older and starting to act more like a newborn - in any case, it's really nice being able to interact with him a little more.

Brienne and Max cuddled today for more than an hour and Max was awake and looking around the whole time - with the exception of the last five to ten minutes when Max's blinks got longer and longer until he just drifted off to sleep. Mum told some stories, sang some songs, and gave Max the scoop on his furry siblings waiting for him at home - of all which seemed to relax the little butterball a great deal. He enjoyed his meal today without his usual post-meal episode, and in fact didn't have an episode at all the entire time we visited with him, and had no real dips to speak of either. Max is definitely getting better at regulating his breathing and is remembering that he still has to do it even when he's upset or has a full belly. If he can keep this up he'll be off of the CPAP in no time. We're very proud of him.

Monday, August 23, 2010

Information for our expectations

So today, we visited Max and his 2200g (4lb13.6oz) self and were greeted to a mostly naked, although still bundled guy.  He was very comfortably resting on his tummy. We got to see how his scar from surgery has healed and it seems quite nice and uniform.  Dad is going to have to help Max craft a story later in life about how he sustained the "injury" fighting tigers or sharks, or.. tiger sharks to impress people for purposes of romance.

His breathing was very good and very stable today. He still has the CPAP of course, but he's hovering at 21-24% on his settings. One of the doctors came by and Rafael asked when to expect the CPAP to be removed. Essentially, they want to wait for him to spend less time dipping and more time just being stable.  When he gets a bit better at regulating himself, then the move off of the CPAP onto the tubes will be that much easier.  So it's less about the numbers outright and more about how long he keeps up the good numbers while avoiding the bad numbers.  Right now, he still spends a bit too much time coasting just under the ideal levels. We can expect him to progress far enough within the next few days, but it's all up to Max and his lungs.  He's been fighting his tiny, chubby, butt off since day 1 though, so he can take his time if he needs it.

Sunday, August 22, 2010

An Interactive Max.

Today's visit lacked the beloved cuddle time.  Max was doing ok, but he had had a few episodes throughout the day that required his Oxygen settings to be higher than earlier and he was crashing and beeping and booping more than usual.  They decreased his feeds by 4ml per feed though, and this seemed to calm him down. The idea here was that he was getting too full and was just having a hard time adjusting to it quickly enough.  Mum and Dad still hung out with him though and we had a good time just talking and being around the little chub-monkey. He did really well for us and opened his eyes for Vóvó at Dad's urging. Apparently, Max recognizes his parents' voices and always looks around for them when he's not too tired to open his eyes. It was nice to see him become so much more interactive than he used to be. Other than that whole "breathing" thing, he's acting more and more like a normal newborn. As always, we're very proud and smitten by the little butterball. Also, he's chubby.  His cheeks are like little built in pillows that smoosh a lot when he's laying on his side. It's adorable.

Saturday, August 21, 2010

Oops.. Forgot that I didn't have a glove on.

We hung out with Max for a while today. He got to cuddle with Mum today while he ate. He still has the CPAP, so his cuddle times are still a bit of a balancing act, but today we managed to get that almost perfect position where the tubes were resting in all the right directions so as to not put too much pressure on his little nose.  All in all, it was a good time and he showed off is cute chubbiness as he has tended to do lately.  There's not much else to report. He's stable with his breathing, doesn't have any episodes unless you  harass him, and basically just sleeps, eats and poops all day like any other baby. Dad "accidentally" touched Max's cheeks with his bare hand and was very happy with the softness, and baby-like texture of his wonderfully rosy cheeks.  Just before we left, Max said "Bye!" by having his numbers dip a bit for us.  He really doesn't like it when we leave him. Very soon, we'll be visiting him more times per day to take part in more and more of his day's routine and will most likely have to have our mail forwarded to the St. Boniface NICU as we'll be there for most of our waking hours.  We're looking forward to his further progress and are excited to see him act and feel like what one expects with a newborn.  He's adorable and awesome.

Friday, August 20, 2010

White knuckle moment.

Today, we got to Max and he had already been changed. We weren't late for our daily rituals, he was just SO cranky and SO in need of a change, that the nurse had to help our little prince out of his soiled garments and into some nice, fresh, crisp clothing and diapers. He became very calm afterwards and dad got to hold him while he was being fed. While he was getting settled in, Mum offered her finger to Max so that he would stop grabbing at the CPAP tubes. He had the cutest, strongest grip on her finger. His entire finger was white as he refused to let go of his Mummy's finger. It was quite cute and brought many smiles to the little family. He was very calm throughout most of the holding and then, when he got put back into his crib he fell asleep almost immediately. His only real "episodes" today were right when his feeding tube was inserted (he HATES that), right after his tummy was full and right before Mum and Dad left (he gets so sad when we leave). These are all normal moments to have episodes, so there's nothing really to worry about. Auntie Andrea visited for a while and she got a crash course on Max and his little post-feeding episode. It's really nothing to worry about, and it's quite normal for children of various ages and sizes to get a bit cranky when their bellies are so full. His auntie will get used to seeing this as time progresses, we're sure.

All in all, he did exceptionally well today. He's still on CPAP, but they've lowered the pressure even further and he's doing better than the last time they switched him to the less obstructive regular prongs. We should see him move off of CPAP soon, and if he continues in this manner, that should be the last time he'll ever have to deal with the infernal CPAP nasal forks.

Thursday, August 19, 2010

There is some weight to water.

So Max's weight came in today at 2069g... Again. This seems like he's made no progress, but the truth is most likely that he had been retaining water a few days ago and that factored into his gargantuan weight gain the last time. They gave him a diuretic a few days back and he has since re-balanced his fluids. His breathing is far better too, so most likely the fluid buildup he had was also impinging on his ability to breathe properly. All in all, today was a great day. He was feisty, he was active, he was breathing so well. The only time he really had any issues was right after we changed him into his cute little onesie.  Otherwise, he was doing great all day at around room air (21%) and was just being cute and awesome. So, there's nothing much else to report about him. Now that he's doing so well with the CPAP, we assume it's a matter of a day or two before they move him onto the less cumbersome air tubes. Ideally, he'll take to them better than the last time and this will be the last time we have to deal with the evil CPAP prongs of face squishing.
As an aside, his cries are getting louder and louder.  At first, they were just little squawks, but now he sounds like a duck having a temper tantrum. It's quite adorable and makes Mum and Dad giggle a lot.

Wednesday, August 18, 2010

A little closer.

Today's visit with Max was fairly uneventful, which is always a good thing.

He had managed to pull out the feeding tube that was in his nose sometime last night, and they had since been inserting the tube down his throat during each feeding the way they had originally done. Now, when Max gets a new nurse, they don't always know all the ins and outs of Max's personality and what he is and is not willing to tolerate. He hates having that feeding tube threaded down his throat almost as much as he hates the CPAP - which is why they had one semi-permanently in his nose. They don't normally put the feeding tube through the nose while kids are still on CPAP, because it's too bulky to have two things in one nostril, but it improved his mood during feeds so substantially that they decided to stick with it. So, today after he had a major episode - gags, sputters and other dramatics - following the insertion of that feeding tube, we advised the nurse to just go back to the nose. Hopefully for Max, and the sanity of his nurses, she'll do just that.

Other than that, Max was great today. His oxygen requirements are still quite low and they reduced the amount of pressure with which the CPAP is delivering said oxygen. So, Max is well on his way to being back on those snazzy, clear nose prongs.

We visited him again later in the evening and were greeted to Max being at 21% (room air) on his CPAP.  What was most amazing about this is that he was at this level with only 1 prong in his nose; he managed to wiggle mostly out of it and was doing quite well with half the help he had earlier in the day.  We were very proud of him and he dipped only when Rafael tried to adjust the prongs. He REALLY hates them.

Tuesday, August 17, 2010

Maybe next time.

They removed the CPAP from Max's face earlier today and tried to get him on the simpler, nicer feeling prongs.  Max would have none of it, so they put him back on CPAP.  They also gave him some caffeine, which they hadn't given him for 2 weeks or so. The caffeine seems to be helping him breathe a lot better on his own, so even on the CPAP, he was doing quite well and they could carry on with his oxygen set lower.  All in all, there was still some progress today, so we aren't really worried about his need for CPAP. Also, they tried to switch him off of CPAP at the height of them poking and prodding the bejeezus out of him.  Max gets a bit ornery pretty easily, so that seemed like a silly idea, and we're not surprised that he didn't take to the change.
We hung out with him for a while and we spent the majority of the time just watching him be cute and chubby. He had a great evening with us and it was nice to see him dip very little and bring himself out of his dips very quickly and without much of a struggle.  As always, he's adorable and feisty and full of awesome.

Monday, August 16, 2010

Preemie clothing will be too small soon.

Maximilian had a good day today. At his weigh in, he came in at a whopping 2069g (4lbs9oz). That means that he's surpassing the 10-30g per day that they like to see in terms of weight gain in children in his condition. We could not be more proud. He still absolutely hates the CPAP, and is a bit cranky with things like "being touched" and "being changed", but had a good, stable day. He still had a few dips here and there, but came out of them very well. His feeds increased to 38ml, so he had a bit of spit-up, and a bit of a dip afterwards. This is most likely because he's eating so much now and his tummy still has to play catch up with his increased size.

He had a few visitors today and he got to open his eyes for Vóvó, which made her quite happy. He also had his great great-aunt Shelley visit. He was very polite, if a bit quiet for the both of them.  He had another visitor in the form of the eye doctor.  His eyes are still good and they'll follow up again next week, as is common with children spending so much time on ventilation.

All in all, today was another stable day with Max. We're very proud of his weight gain and can't wait until his next weigh-in on Thursday. Rafael guesses that he'll be at 2134g and Brienne guesses 2173g. Only time will tell who's correct.  Knowing Max, he'll beat both of our expectations.

Sunday, August 15, 2010

Mr. Chubbs and the shrinking anklets.


Maximilian had a better day today. He was dipping less than yesterday and was generally better behaved. They hadn't given him a sedative in a while and he was still breathing well and barely fussing. He still hates the CPAP plastic face-hugging prongs of discomfort, but at least he's better able to control his breathing while voicing his displeasure.  Ultimately, he is coming along quite well and seems to be on the road to getting rid of the CPAP contraption again soon.

They didn't weigh Max today (that happens on Mondays and Thursdays) but we were given a great indication of just how large he's become; he had his hospital ID anklets replaced with larger ones. To think that, at first, they would freely move from his ankles all the way up his thighs (and as you can see from the photo, they fit on Rafael's thumb). Today, before they removed the old ones, they stayed snuggly on his ankle, barely sliding up and down a few millimeters.  As a reward for being such a behemoth, he got to snuggle with Mum for about an hour or so. He did really well and only fussed about a bit when his breathing tubes started smooshing his little nose around.  When we left him, he was peacefully laying on his stomach getting ready to dream about the amazing things kids his age dream about.

Saturday, August 14, 2010

Don't make me angry...you wouldn't like me when I'm angry.

Max smash!!

This seemed a little bit like the theme of our visit today. Max is down right irate about his return to the most uncomfortable CPAP prongs. They had to give him a little more sedation over night, just because he was so angry and unsettled. As frustrating as it is to watch Max struggling to free himself from the contraption, it must be even more frustrating to have it shoved uncomfortably in your nose, and have it yanking and falling out every time you so much as turn your head. Add to that the brief taste of freedom he enjoyed yesterday, and you have one cranky little boy.

A wrestling match ensued for a good portion of our visit, just trying to get Max to leave his head on the bed and not pull the tubes out of his nose (which he is very good at). We're proud of him for being so strong, but it would be nice to be able to reason with him - you get the CPAP off when you can learn to breath without it.

The doctors are going to try Max out on the little nasal prongs again in the next couple of days, so hopefully he will fare a little better this time, and go a little longer, or ideally say goodbye to the CPAP all together. Time will tell.

Friday, August 13, 2010

Two steps forward and one step back is still one step forward.


As we walked into the hospital today we wondered if the doctors had decided to take Max off of the CPAP and move him to nasal prongs like they had planned to do. As we entered Max's pod in the NICU we were greeted with his whole little face, unobstructed by the large CPAP tubing. At that point he was breathing on his own (with a little unpressurized oxygen) for nearly 5 hours. There were a lot of ups and downs during our visit. He was quite comfortable when we arrived and his oxygen levels were nice and high. We decided that Rafael would try holding him today seeing as he seemed very comfortable - worst case scenario, he wouldn't tolerate it and he'd go back to his bed. So, Max was fed while being held and he did fairly well for about 15 minutes. The rest of our visit was Max ringing alarms on one end or the other. He was struggling a fair bit to keep his oxygen and heart rate up unless he was lying very still and very relaxed. Well, still and relaxed aren't really Max's style, so he would be fine one minute and sounding alarms the next. We left him to rest once he was evened out and stable.

We called later on in the evening to see how Max was doing in his efforts. They had decided to give him a break and move him back onto CPAP for a few more days. Breathing is a lot of work for a little guy like him, and sometimes the first try isn't the one to take. It's pretty common to move back and forth between the CPAP and the nasal prongs a few times before it just "sticks". On the plus side, now that he's back on CPAP his settings are offering him much less support than the last time he was on it, so he's moving forward in baby steps. In a few days he'll try out the nasal prongs again and see how it goes. At the very least, Max was much less aggravated without the tubes on his face, so maybe that will offer a little incentive for him to breath better. For now, he'll regroup and summon the energy for the next try.
We got some pretty cute pictures though - it's so nice to get some of his whole face!

Thursday, August 12, 2010

How many chins can one baby have?

We snuck in to see Max this morning just before 2. He was sleeping soundly and was in a pleasant mood. We were lucky to have made it just before his change-up and feeding.  After we changed him, the nurse stripped him naked and took the prongs out of his nose to quickly weigh him. He came in at 1903g (4lbs3oz).  Once we got him back in his crib and fed him, he quickly fell asleep comfortably.  It's worth noting that, this night, he spent a lot of time being "harassed" by the nurses and his parents and he barely dipped at all, which is phenomenal.  He's a lot more stable than he used to be and he's coming back from any setbacks before any of the machines can even warn us about any problems. He's getting the hang of being a baby quite well and we're excited to see him progress even further. Hopefully, he'll have those prongs out soon so we can start doing more skin-to-skin holding. With them there, it's simply too uncomfortable for him to be held in a way that he enjoys.

We went to visit him him again in the afternoon, at the regular 4:30ish time.  He was still doing well and was sleeping soundly. We changed his diaper, fed him and just hung out for a while while he lay there, being cute. He's eating 36ml at a time now, thanks to his increased weight, so his after-food nap comes very quickly after he eats. He's gotten visibly fatter and he has about 3 more chins than most people. He's kind of all chin, actually, as the rest of his body is still catching up in girth.

Tomorrow, the doctors are going to try and take the prongs out of his nose and give him the "Hollywood-style" cannula for breathing. This will be a step forward (if he can handle it) and will mean that we'll be more readily able to hold him without him fussing all the time. We're excited to see how he does with it, but are also prudently aware that it's sometimes necessary for babies to go back and forth between the cannula and the maddening prongs for the first little bit.  Our irrational hope is that Max will like not having the prongs so much, that his joy at their removal will counteract the difficulty of having to do that much more work on his own..

Wednesday, August 11, 2010

Shhhh...you'll wake the baby!

So, today was another of our shorter visits, as Rafael had to work one of his irregular and always annoying evening shifts. We had to visit earlier than usual and leave earlier than usual, which meant that it was sort of an uneventful time to visit Max, as he was just snoozing away and wasn't due for a change, feed, etc, until it was time for us to leave. As a result we seemed to confuse Max a little bit, as he's used to hearing our voices just shortly before it's time to get a clean bum and a full tummy. He first got excited, and then got mad that we had tricked him. He did eventually calm down and fall back asleep. Max makes some pretty adorable faces while he sleeps.
We were informed that the doctors decided to increase the amount of chloral hydrate (sedative) Max is receiving. It seems as though he's built up a bit of a tolerance as it wasn't really keeping him very calm. Now, it's great that Max has so much energy -- unfortunately, push-ups, crunches and face plants don't go very well with the breathing apparatus on his face. The more he moves, the more likely it is that it pops out of his nose, and he does at this point, still need it to breath. So, until he progresses to the low-profile nose prongs, he needs drugs to calm him down. Soon, he'll be allowed to be his feisty self. We're in for a handful when Max gets home, there's no doubt.
He was doing great with his oxygen today, and remained at 23% the whole time we were there, even when he was disturbed for his diaper change as we were leaving. More often than not he was ringing high in his oxygen and the few times he dipped he brought himself right back up. He really seems to be getting the hang of this breathing stuff. We couldn't be more proud.

Tuesday, August 10, 2010

Dancing and Dipping

Today was another active day with Maximilian.  When we got there, he was sleeping quite peacefully and seemed oblivious to the world around him. He wasn't fussing at all and he was breathing steadily and requiring 24% oxygen to be that comfy. Which was funny because Max needed a change in the worst way, and that usually causes him to fuss about like a raging rageaholic in the midst of a rage. He awoke while we fussed with him and was nice and interactive with us until Brienne got to hold him. He definitely still hates those nasal prongs.  The issue with those is that he can't move his head much, lest they come out of his nostrils and force him to work a lot harder for air. Because of this, holding him is not his favourite part of the day as it requires a lot of work to get the perfectly correct body positioning for both him and the person holding him.  He had a hard time staying comfortable, so he would dance about and start dipping here and there. Overall though, he had more stable time than dancing time, so it was a mostly good time. Brienne held him for well over an hour before he went back into his crib and fell asleep on his tummy.  He definitely had a good, mostly boring day.

Monday, August 9, 2010

The 1700's are boring.

So Max shot right past the 1700's and was weighed in at 1805g today (4lbs).  He is now way over double his birth weight and he's just adorably massive. We spent a good amount of time with him today and got to have a few staring contests with the little guy until he ate, fell asleep, and then fussed for a while.  Overall, he's still doing quite well and still progressing nicely.  His feeding tube now goes through his nose, so he dips less when he's being fed because the nurses no longer need to put a tube in and out of his mouth during the process.  He hates it, of course, but seems to be managing as well as he can with it.  He's still a little Fusspot, but the amount of energy he has and dedicates toward telling us off seems like a blessing in disguise. He's phenomenal in his crankiness, but is also very cuddly and serene when he gets what he wants.  *cough*likehisdad*cough*.  Brienne and Rafael both gave Max the first kisses on his head - after the nurses gave the ok - and were both a bit misty eyed for a bit afterwards. Max is, as usual, amazing.

Sunday, August 8, 2010

Boring Progress

Max is in another one of his ruts of having nothing much to report. Mum got to hold him today and Vóvó got to see him sleeping in Brienne's arms.  He's still breathing with CPAP, and they had his oxygen set a bit higher today - most likely due to him just being tired and having to build up some more stamina.  He was  very alert and we got a lot of eye-to-eye time today before he passed out like a drunken, chubby sailor after his tankard of milk. The important thing to take from this boring time is that he's comfortable and coming along wonderfully.  One of the signs of his progress is that, when they disconnect the ventilator tube to move him, he dips less than before and takes longer to actually start dipping. This is HUGE compared to the last while where he'd dip immediately and significantly.  We're quite proud of the little guy and can't wait to hear about his weight increase tonight.

Saturday, August 7, 2010

Snug as a drugged bug in a rug.


Our visit with Max today was lovely, as always. He had received his sedation a couple hours before we got there, so he was nice and calm throughout our visit. He had been breathing very well through the day and we were informed that he had typically been between 22-25% oxygen, which is really awesome. If he can make it down to room air (21% oxygen) and do well on that for a bit they'll try him out on the nasal prongs - which just offers him a little oxygen with no pressure behind it. That will be one step closer to Max breathing regular, old room air all on his own.
 After we changed his diaper, took his temperature, got him fed and generally all snuggled back up we managed to get some pretty cute pictures of him peacefully dozing. We also made his standard issue, metal-barred crib a little more festive by adding some jungle decals that Deborah had bought for Max when he was born. A little stuffed dog is now hanging out in his crib with him too.
Not much more to report today. Max is adorable - but you can see that for yourself.  :)

Friday, August 6, 2010

Daddy pats me too hard!

Today was dad's turn to hold Max.  Despite Rafael being less cuddly than Brienne, and despite his bum patting making Max feel like he's on the bumpiest ride ever, they hung out together for a short while.  Max was very alert and kept staring at both mum and dad with his wonderful, deep blue eyes.  Today was another one of those days where there was very little to report. Max is still getting better at breathing.  His feeds are making him less cranky (if you ignore the tube they need to insert and remove for feeding) and he's coming out of dips a lot faster than ever.  He's doing really well and his parents are super proud of him.  If he progresses at this rate, he should be onto nasal prongs (just those thin ones, like in the movies) in no time.

Thursday, August 5, 2010

Max enjoys the bum patting.

Brienne got to hold Max for quite some time today - about 1.5 hours.  It wasn't the regular kangaroo hold, but instead just a regular cradling of a swaddled little Maximilian in the crook of her arm. She got a bit of a hand cramp from all of the patting of his bum he was enjoying. Her super power of putting babies to sleep is well received by Maximilian who essentially passed out the entire time except for a few minutes here and there. He was stable the entire time except for the 30 seconds after his feeding tube was both inserted and removed.
He's getting better at not pulling the things out of his nose, but has taught himself to faceplant into the crib mattress in order to remove it. Maybe one day soon they can upgrade him to a lower-profile breathing apparatus, or maybe he'll learn that he still needs this tube in his nose to help him breathe and will stop pushing it out and into his eyes.
Oh yeah, we forgot to mention it.  His temperature control is so good that they've decided that the isolette was keeping him too warm, so he's in a lovely 70's era state-assigned metal-barred crib. This means he gets to wear a lot of sleepers and looks cuddly and warm in all of them.
All in all, today's visit was great and calm and he's adjusting well to his increased feeds of 32ml per meal.

Wednesday, August 4, 2010

Brienne likes to cry.

Brienne was crying for many parts of our visit with Max tonight. First of all, we only got into see him quite late at night as we were out of town with the extended Borger clan and got in quite late in the evening.  So, she cried at seeing him because she missed him. Daddy may have cried too, but there is no documented proof of that. Then, as he was being weighed, they took all the apparatus off of his face. This meant that, out of his entire 2 months (to the day) of life, this was the first time either one of us had seen his beautiful, chubby cheeked, big eyed face. It was quite a beautiful sight and there was nary a dry eye among his parents. Then, the rest of the time was spent hanging out with his very animated, grabby, staring awesomeness. This was one of those days where he had a lot of energy and seemed to want us around holding his little hand and patting his little bum. We were super happy to oblige.  He was breathing like a world-class breather and his episodes were really short and he bounced back rather quickly, even from his crankiest "I'm going to hold my breath until I calm down" moments. Also, he had been on his best behaviour since just before noon when they gave him his 2 month vaccine shots. We have to say that tonight was a great night to visit him as he was so very interactive and had nothing but great news to give us.

So, his weight is at 1692g (3lbs~12oz) and his length is at 39cm (15.4in). He's growing beautifully and we have to say that he's just a gorgeous little boy.

Tuesday, August 3, 2010

A quick little visit before leaving town.

We visited Maximilian tonight and were greeted to a diaper change and a feeding. Everything went well, and he didn't fuss all that much when we had to take him out of his cute little sleeper.  All in all, he seemed to be doing much better than a few days ago.  His "episodes" were much less drastic and he got himself out of any breathing trouble very quickly.  His only issue was that he was still trying to figure out how to deal with the extra air being pumped into his tummy.  He definitely needs to figure that out soon, otherwise they are going to have to deal with this issue using glycerin suppositories and his feral nature would definitely become known to any nurse who even thinks of trying that with him.   Overall though, he's doing great and there isn't much to report this night.

Monday, August 2, 2010

Cranky and Awesome.

Visiting the little guy today brought us more of the same, essentially. Brienne apprehensively tried to hold Maximilian and he - much as was expected - took to it poorly. He's still getting used to his new everything  and is therefore in a super cranky mood. It's as if he's saying, "Just leave me alone until I figure this all out." This is a trait he definitely gets from his father.  He gained 40g, which brings him to 1580g (3lbs8(ish)oz).  It's not that much weight gain compared to the last time, but it's not bad considering he's been doing so much more work and had decreased feeds for a few days. Also, with fewer tubes, his weigh-ins have become more accurate to his actual weight. Overall, he was energetic and breathing really well and controlling his breathing and heart rate very well even when he had minor episodes.  When we left him, he was resting comfortably and looking wonderfully chubby and serene.

Sunday, August 1, 2010

The day Max let us know his true feelings about tubes...

Brienne got to hold Max today. Some days, he's really cranky and just wants to be left alone. Today was definitely one of those times. They have re-upped his feeds almost to the point he was at before and they've found no issues with his blood tests in terms of infections or any other medical problems. He's tolerating food better than the last day or so and his tummy is visibly less bloated. He's still breathing well , mostly on his own, and he's still feisty as all heck (even with the sedative). He absolutely detests the current air contraption on his nose and most of his crankiness stems from it either pulling or pushing on his cute little Brienne-nose in one way or another.  Overall, he's doing a lot better than before and we're just in a holding pattern waiting for him to get better at breathing and growing. Basically, Max is back to being a bit boring and simply hates tubes. A lot. More than anything. Ever.