When progress meets regress.

So, Maximilian is breathing better today. He's off the initial type of nose-only ventilation and is on a newer method that assists him less. Because of this, we got to see his whole mouth better and without the added physical smooshiness of the previous ventilation mask.  He's adorable as all heck and has dad's lips, apparently.
In less good news, they reduced his feeds and are supplementing them with an I.V. drip because his tummy is very distended and causes him a lot of discomfort. His bowels still sound good, and his x-rays have come back promising, so the current theory is that it has to do with a lot more air being in his tummy. This is not uncommon with this ventilation method and everyone expects it (and his gas) to pass in due time. For now though, they're just watching it and testing for potential infections just in case.  His lovely, feisty crankiness is still there when he's handled, but he rebounds from that stress beautifully and generally needs little help in breathing when he's calm.  Still no kangaroo holding today, as we're waiting for him to still even out. He's doing a lot more work than he used to and is dealing with a lot of little and big changes, so we'll let him get used to his new physical condition before we start pestering him for hugs.
As usual, he is beautifully cute and adorable and as feisty as ever.

The ins and outs of breathing.

We went to visit Max today and he has officially made it more than 24 hours without having to be re-intubated. He has become a bit more cranky in the past while, but this is most likely due to the fact that he's getting used to breathing and doing everything else without the aid of the ventilator. He still hasn't figured out what he needs to do when he spits up, so a bit of milk-drool is a big deal for him.  He'll learn in time to stop panicking every time he spits up, but for now, this is met with a bit of a dip and a lot of redness in his face.  He definitely gets his temperament from his mum.  He needs to learn how his new throat works and what he can and cannot do with this whole clear airway thing. We're going to take a few days before we try to hold him again as he just need to chill out a bit for a while.

Brief Update

We called in just after 10 p.m. tonight to see how Maximilian was doing. He's still breathing well and they have his oxygen as low as room air (21%) although usually a tad higher as he's not fully comfortable at that level yet. So... He's made it 12 hours on (mostly) his own breathing power and we couldn't be more proud of the little guy.

Oh, and in all the excitement of the last post we forgot to mention Max's last weigh-in. The little chubbster is tipping the scales at 1540g (3lbs 6oz), which means he's up to eating 29ml every 3 hours. We're pretty sure he's carrying all the extra weight in his chins. He's adorable.

Pride and prejudice.

When we got into the NICU, we were told that Maximilian would not be coming out for a cuddle party today as he was exhausted. Once again, the doctors believed he was ready for an extubation.  Once again... Actually, no. For the first time, he did well without that length of plastic oppression shoved down his throat.  He was breathing without it and had a different ventilator set up around his nose. This CPAP ventilator works far differently; he breathes on his own and it gives his lungs a little extra push right at the end and that's it.  No longer does he have that silly plastic pipe getting in the way of his hands and comfort. This is a HUGE step and we have to say that we were the happiest, smiliest and downright peppiest we've been in a while. We are being cautious with all of this, of course.  Should he choose to get lazy, or should there be any major issues, he could be put back to the old ventilation method. For now though, we're riding the high of this lovely news. We could see his beautiful upper lip and we could hear him cry. It's a small, hoarse cry right now, but as his vocal cords cease being irritated, and as his lungs get used to this new lifestyle, we expect him to scream and cry like the rest of child-kind within the next while.  Today was a great day and Max is so beautiful with his chubby cheeks and his beautiful curled lips. We're proud of him.

Short but sweet.

Today was a shorter than usual visit because Rafael had to go to work for one of his dreaded evening shifts - otherwise known as, "this should be Max time." Although we were only able to stay just short of an hour, it was a nice visit. Max was back on PSV and doing just as well as yesterday, if not a little better. While we were there his breathing was so deep and steady, and he was sleeping peacefully. There was something about the way he was positioned today that just made his little cheeks look so big and chubby! Maybe it's just that they really are so big and chubby. Either way, he was ridiculously cute. Tomorrow we'll get a longer visit and hopefully he's in the mood for a cuddle.

Hold steady.

We visited Max again today at our usual time. By the time we got there his nurse had already changed his bum, so he was ready for a cuddle and some food right away. It was Rafael's day to hold him, and they settled right in - Max, with fists of chest hair - for a solid hour. Prior to taking Max out of his bed, his nurse tried to put his little hat on - the little blue hat, that you may remember from photos near the end of June that Max was swimming in. Well, instead we got to take the hat home as a keepsake, because Max had well outgrown it and it wouldn't fit on his head. He may yet end up with a Santos head to match his Santos ears.

Once Max returned to his bed after his cuddle with Dad, he needed a diaper change again - if he does one thing well, it's poop. We noticed a little bulge in his groin area, and the nurse explained that it looked as though he had developed a hernia. Now, we were assured it was nothing to worry about, as it is extremely common in preemies (especially boys) and it won't cause him any pain or discomfort. The problem will be surgically corrected either before he comes home from the hospital or afterwards, in a quick, out-patient procedure (most often kids come home the same day). The doctors prefer that the babies are a little bigger before they do this surgery, as there is really no reason to rush it.

On the breathing front, Max's ventilator setting had been switched back to AC/VG, for what seemed more of a doctor preference than necessity according to his nurse. Apart from a few dips overnight, Max himself wasn't doing any more or less work than he had been doing the day before on PSV. So, really, nothing much had changed in terms of his breathing. He's still doing a great job of taking lots of deep, steady breaths and not relying on the ventilator too much.

Otherwise, Max was just his adorable little self today. We had a great time visiting with him.

Keep your hands to yourself, little man.

Because Rafael had the night off, and because Maximilian is awesome, we, the parental duo decided to go visit the little guy sometime after midnight. When we got there, he was resting well and doing a fine job breathing and keeping his levels where they needed to be.  We changed him, we fed him and we basically just had a blast hanging out with the boy.  He was as low as 23% on his ventilator's oxygen settings.  Even when he was flailing around, trying to tear out his accursed tubes, or trying to do pushups and hand stands, his breathing was steady and his oxygen levels were staying where they needed to stay. He was doing so well, and showing off his energy levels, and showing off his ability to grab and pull things that the nurse decided that some mild sedation - to make him a bit less rambunctious -  would be necessary. We left the NICU tonight with Maximilian dozing peacefully with his hands restrained wonderfully in his blanket.

Maximilian is a such a polite young boy.

Super Max was doing great today. He had very little, if any, hiccups throughout the night and he was calm and wonderful when we got there. He gained 90g which brought him up to 1460g (3lbs4oz).  Because of his onesie-busting frame, they upped his feeds to 27ml every 3 hours. It's only the addition of one milliliter, so Rafael likes to think of it as a bit more dessert for good behaviour. He's still on PSV, and he's coasting far less than the last time they had him on PSV. They have his oxygen at 24-27% and he dips down very rarely.
He got to cuddle with Brienne today and he did very well there and didn't have any dips, beeps, boops, or bings the whole time. The only reason he went back into his little baby condo was because they needed to do another eye test on him. We called in after the test was done and were told that, not only were his eyes doing well, but Maximilian fussed very little during the whole procedure. This is amazing, because the procedure is usually seen as the worst one in the entire ward; it's not unusual to have babies give the entire staff an earful during and after the ordeal. We're proud of Max for being so polite and thoughtful with the hospital staff.

Be quiet out there!

Maximilian has been doing such a steady job of breathing with his ventilator that they switched him back to PSV mode earlier today. He responded to it well and was doing a great job of triggering big, steady breaths. We parents were mighty proud of him when we got there and learned about his little step forward. He was working out when we got there, doing back lifts, pushups, squats and what not in an attempt to mightily say "I'm Hungry!!!!!!". After changing him and checking his temperature, we placed him on Rafael's chest and fed him his 26ml of milk. He did very well with the feed and then fell asleep on his daddy for a short while. Then, Max decided that he had enough fun for the day and wanted back in. He definitely needed his quiet time - today was so much work for the little guy - so Mum and Dad let him be. Just as they were leaving, Max was at perfect rest and was just a cute little bundle of sleepiness and adorability.

Like a Burrito.

Due to us sleeping in, we visited Max a bit after he had been changed and fed which meant that moving him around to hold was not the best idea. As much as we love the guy, we'd love to avoid him spitting everything up on us til a bit later in his life. So today, we just visited and chatted with him for a while as he lay there, wrapped up like a super cute little package. He looked adorable and comfy and we were happy to have such a calm and boring day with him. In positive news, his breathing is better in that they turned down his pressure requirements with his ventilator. This means that he's retaining more oxygen and more easily bringing it in on his own. That's a small step in a long journey, but it's a step nonetheless.

Photos

Photos have (finally) been added throughout the blog. Be sure to flip back to the beginning to catch them all. 

And here's a little "then and now" that shows how big Max has grown!

Calm Cuddler

Today we visited with Maximilian and he and Brienne got to hang out and cuddle for a while. he was very calm and had no unusual episodes to speak of today. His oxygen is a bit lower, but he's still using the assist control function on the ventilator. With that said, he is breathing higher volumes of air and with less pressure than before, so this means that his lungs are working reasonably well in terms of their ability to bring in and filter air, so that seems like a good thing. It was, overall, a calm day with him and we had a lovely time just hanging out and letting him be himself.

Napping with Dad

We saw the little guy today and Rafael got to hold him yet again. They hung out for a little under an hour.  Max passed out pretty quickly on his dad's chest and spent the better part of it just relaxing. Like clockwork, he started getting restless when half of his feeding was done and he went back into his little bubble bed. He's doing much better when he gets moved, which means that it's less stressful for him to be moved around like that. 

His breathing is still "troublesome" in that he isn't doing on his own anymore and he's back to A/C (instead of PSV) so that means that he's doing less work. His O2 levels are creeping lower in general, though, it's just exhausting him to breathe so much on his own. His goal - well, our hopeful goal, really - is that he will just kind of "click" into breathing on his own when he gets bigger and gets more energy overall.   He's still amazing and cuddly and his ID bracelet on his ankle is starting to look a bit snug, meaning that he's growing wonderfully. So wonderfully, that he is now at 1370g (3lbs and a bit). Everything but the breathing "thing" is what they want to be seeing in a baby in his situation.

He looks kinda fat...

Today's visit with the little guy went pretty well.  We got there and he was back on PSV and with 24-26% O2 levels. He was still triggering things a lot on his own and seemed to be doing well in keeping his oxygenation levels up. We took his temperature, fed him and just hung out for a while. He had his vóvó visit him today and he opened his eyes for her and was generally really pleasant and calm the entire time.  Happily, this was one of those boring visits where nothing too much had changed and where we were told that it was all "same old, same old". 

We decided later at night to visit him a second time. They had him back on the AC+VG because he had some "episodes" earlier in the evening. Nothing was really wrong, but it just seemed like he only had enough energy to do two things, and he decided that growing and digesting were more important right now than breathing. So, this meant that he needed a bit more help with it in the later part of the night, but was still doing ok. We were also told that he had his first voyage scheduled. In early August, the plan is to pack up some of his stuff, put him in a travel bed and take him to the Children's Hospital across town where he was going to see the ENT specialist. The reason they need to go there is because of the equipment they'd need to check into his breathing issues. The ongoing belief is still that his upper airways are too narrow.  These tests will let us know one way or another and that means we'll be able to make better decisions about how to proceed with his care vis a vis his breathing.

All in all, today was a good day. Also, Max is getting a bit chubbier. His mum pointed out some lovely developing rolls on his arms.  It's such a magnificent difference than before. We are so proud of our little ever-growing butterball.

Ssergorp

Today, Max took a step (or two) backwards and was breathing less on his own and more with the assistance of the ventilator. They took him out of his previous mode and put him back on assist control mode which means that the machine is doing more of the pacing and ensuring that Max gets more breaths per minute than the previous mode was forcing. Over night, he was having a hard time keeping his oxygen in his blood, so they switched to this mode in order to make sure he had a more stable pacing. The reasoning for this is like the reasoning for everything else. Just because. Otherwise, he's doing well. He's still taking well to his increased feeds and is still doing everything else a baby in his condition is meant to be doing. Sadly, it was too short of a visit today to get to hold him, but he did seem quite comfortable and full of his usual energy.

It's just one of those days...

...where everything seems better.

We went to see Maximilian today and I (Rafael here) have to say that today was a great day with the little guy. His great (both meanings, don't you know) aunt Shelley came to visit him while Brienne was holding him. He was cuddly, warm, not too fussy and just the right amount of alert. His eyes would open repeatedly and look around for a while until Max remembered that he was kind of more of a napper than anything and would close them again.

He decided that he loved his mum so much today that he'd let her hold him for 2 hours. Now, normally, 1.5 hours would be the max because that's the amount of time it would take him before he got cranky with hunger and a messy diaper. They weighed him this morning, and having found that he had ballooned to a whopping 1300g (2lbs14oz), they shifted his feeding schedule to more food per feed at 3 hours between feeds. In cuddle-terms, this means that we get to hold him longer before he becomes a fusspot and have to put him back in.

The "scheduled" visit by the E.N.T. specialist did not happen today. It may happen tomorrow, or it may not. Because of this, we don't have much of an update on how his breathing is progressing from a medical standpoint. From an anecdotal view, I (Rafael still) have been noticing that he's breathing in generally more oxygen with less pressure and keeping is saturation levels where they need to be with a bit less O2 concentration than his usual 24-27%. He still has some dips and a few bleeps and bloops from his machines, but he seems more stable with his current situation, which seems like that elusive "progress" the medical staff seems to insist upon. Hopefully, we will get good "official" news the next time a doctor gives Max the once over.

Mr. Maximilian Fussy Pants.

Visiting the little dude today was lovely. Rafael got to hold him and it was a mostly warm, mostly calm hour or so. Near the end, the little guy had had enough and simply wanted back in his isolette. When the nurse put him back in, his vital signs all started going crazy and Max was being difficult. As it turns out, with the last intubation, he does not like being on his tummy if his head is turned to his right. It took the nurse and his parents a while to figure it out, but the moment he was turned onto his left side, everything was fine again.  It turns out that Maximilian has inherited his father's general attitude toward discomfort: whine and whine until it's resolved, then act like nothing happened. All in all though, it was a nice little time.  Tomorrow, an ENT specialist is expected to come by and see how Maximilian's airways are doing.  Ideally, what they'll find is that his airways are narrower than he needs to breathe. If this is the case, he'll simply need to grow more (which he is chubbily doing anyhow). If that's not the case, then it's most likely a simple question of waiting for further development anyhow.  One way or another, we're patiently waiting for Sir Fussybottom to find his way to breathing on his own properly.

Maximilian is a cuddler.

Maximilian had a good day today. His O2 levels were well within acceptable parameters, and he was drawing in plenty of air at his own pace , with minimal assistance from the machines. He has yet to coast below the 23/24% range, but his pacing and volume are at the best they've been his entire 6 week (and a day) life.

Brienne got to hold him today. This went on for slightly over an hour, and we realized that he's a little creature of habit.  At 6:05 he started squirming, and by 6:10 he was ready to go back into the incubator. this is always the time he starts realizing that food is on its way. Much like his mom and dad, when Maximilian gets hungry, he cranks himself right up and is slightly intolerable until food goes into his tummy. I wonder how angry he's going to be when they change his feeding schedule to every 3 hours starting on Monday (assuming he's hit his 1250g weight threshold for such a change)?  Either way, it was a good day today.

Sometimes, the Bleeps and Bloops are a good thing.

We visited Max two times today. The first time, he was back to PSV, and back close to where he was when he was at his best before. He still dips a lot more obviously when he dips, but comes out of it fairly quickly and is doing a lot of the triggering of his breaths on his own. This is a good thing, ultimately as it means that his body understands what it needs to do a bit better, but it just doesn't get the idea enough to have him do it without his hated tubes . Our second visit was more of the same and he looked very comfortable and tucked into his little bed. He was at 24% O2 for the most part and tended to set off his "happy sat" alarm, meaning he was getting more oxygen than he theoretically needed. This is better than not enough, and if he sustains that long enough, they will turn his O2 needs down further and further until he hits the magical room air level at 21%.

His face is getting chubby, and he has an extra chin or two and these chubby little cheeks that are being squished and smooshed by the band-aid used to secure his infernal breathing tube. Hopefully, he'll have a good day tomorrow and we can hold him again. We're totally looking forward to that seemingly mythical time in the future where we can just pick him up and hold him without it having to be such a procedure.

Maximilian and the tubes...

So, we're pretty sure that our little guy is going to grow up absolutely hating spaghetti and any other long, tube-like foods. They tried to extubate him again today. This was something that the nurses were thinking "Um.. Yeah...That's not going to work.", but that the doctors felt like trying anyhow. Much to the validation of the nurses' thoughts, Maximilian did not do well with this and had to be re-re-re-re-re-intubated about 25 minutes later. Now, the theory is that his airways may simply be too small and narrow for the amount of oxygen he needs. The good thing is that, when he does have the ventilator, and after he levels off a bit, he does better with his settings and his breath triggering than he did before. So, there is progress, it's just not as fast a progress as everyone would like to see. And really, he shouldn't even BE breathing for 8 more weeks physiologically speaking, so waiting a bit longer shouldn't seem like such an issue.

The good news is, our little guy reached 1230g today (2lb11oz) which means that he's developing and growing otherwise at a decent rate. In 20g, they will adjust his feeds in such a way where he'll be eating every 3 hours instead of every 2, which means that he'll be eating less often, but with more milk per meal.

Tomorrow, we hope to have his mother (and possibly father) hold him again.

The Ups and the Downs

We visited our little man today and were greeted to the nurse hand ventilating him.  He apparently had a "moment" when she was turning him onto his other side and he decided that a heart rate and proper breathing technique were not for him.  This wasn't an abnormal thing, though, as it happens often enough with children in his condition.  Then, he evened out, we changed him and just hung out for a bit. He was doing very well all of a sudden and he had more energy then we've seen him with lately. He was back on PSV ventilation and was doing the best he's done on it so far. He needs less pressure to get as much oxygen into him, which is always a good thing.  

Brienne then began kangaroo holding him and he took well to it until the 20 minute mark where he decided he was going to have an "episode" again.  All of this is normal-ish, but a bit frustrating. It seems that the whole "two steps forward, one step back" idea is happening in smaller increments of time than before and every day is a bit more of a "Yay...Boo...Yay" type of day.  Still, the positive thing to take out of it is that, when he does control his breathing, he controls it far better than he has in the past.

Wrong way, Max!

Max has apparently become a bit lazy. Whereas he used to be able to trigger his breaths on his own for the most part, he has gotten much less proactive in the breathing department and now needs a bit more help getting air into his lungs. Today, we saw a bit of a step backward as they changed his ventilation method back to the previous pace where it gives him less control over his breathing pace. The doctors believe that this may be due to a build up of sedatives that he has been taking for quite some time. they are going to try and go 24 hours without sedation to see if there is any improvement. In the meantime, he seems a bit less energetic than normal, but this isn't always a bad thing. He's been doing a lot of work lately and maybe he just wants to rest up a bit. None of this is out of the ordinary, we just wished he would barrel through this whole "breathing on your own" thing a bit quicker.

After calling the nurses tonight, we were informed that they had to give him blood due to his hemoglobin being low. Hopefully, this is just what he needs. In cute/funny news, they had to give him some sedatives because he's a crazy little ball of anger without it. It seems like the 'roid rage is kicking in.

Good Eye(s)

When we went to see Max today, his little brow was stuck in a furrow.  It seems that, although he was very polite and calm during his eye exam, he was very tense following the testing. His eyes are doing well (which, at this point means that his retinas are attached) so there is little to no worry there as of now.  He's up to 1.12kg now (which is 2lb7oz, for you Imperialists) which is awesome and he's eating 14ml of fortified breast milk now. He's doing awesome. Oxygen-wise, they had him as low as room air today for a while and he seems to coast best at 22-24%, so at least he's well on his way to breathing the air around him, which can make extubating him that much easier when they decide to do it.

The holding

We visited with Max twice today.

The first time, we were unable to begin the father-son kangaroo care because earlier on in the day, Maximilian decided to pull out his tubes again. He did not take to that very well and they had to reintubate him, which was exhausting for him. He was doing well when we go there, they just didn't want to stress him out too much in one day.

Later in the evening, we went to visit the little guy again. He was doing well still and Rafael got to kangaroo hold him for over an hour. Maximilian and dad got along great, even though Max was doing his best to remove all of Rafael's chest hair with his sharp nails and mighty grip.  All in all though, Max was stable most of the time and they had a great time together. Hopefully, more of this can happen soon.

More Kangarooing.

After calling this morning, we were told that Maximilian was essentially doing the same. I like hearing the boring news a lot lately and look forward to the monotony, quite honestly. 

We visited him this early evening and Brienne got to hold him right away. He took to it very well and was doing a great job of grabbing at his tubes and being a bit of a wriggle worm while on her chest. His oxygen levels, his heart rate, his breathing all seemed regular and strong. His O2 level was actually a bit lower than yesterday, which is nice. By the time we had him back in his incubator and all settled, it was as low as 24% which is only 3 away from room air, which is nice.

We were also informed that tomorrow, Rafael WILL be kangaroo holding. According to Nurse Kim, this is not a choice and Rafael will be hunted down if he chickens out. Rafael is nervous and excited.

Max is doing well.

Max is doing well today. Brienne got to kangaroo hold him and that went on for a while until the little guy started getting cranky again. We gave the doctors the go-ahead for the steroids. The logic we used was that if they manage to speed up his progress towards a non-ventilated life, then that benefit will hopefully outweigh any negative side effects.  Ideally, we`ve made the best decision in what`s been a less-than-ideal group of choices.

Max is cute.

We visited with Max for a while today. He was still doing well, but still had need of the ventilator. He was as cute as a bug in a rug though the way he was wrapped up and everything. We had a "stern talking to" with him about how he needed to breathe better and stop being lazy with his breaths. He seems to trigger most of the breaths right now, which is good, but he seems to get tired every now and then where he seems to just let the machine do all the work for a few seconds. Hopefully, after our talk, he knows better. So, everything is basically the same, and we're still trying to decide if we want to let him wean naturally or if we should let the medical staff give him a bit of juice to help his lungs out. If we choose the 'roids, I hope he doesn't get all uppity with the Rage.

Decisions.

We saw Max today and were greeted to a much more energetic little boy. His O₂ levels were still pretty low (around 23-26%) so there’s still the expectation that he’ll get stronger with his breathing and take to having the ventilator taken away so that he can do it on his own. It’s hard to say for sure though. We talked to one of the doctors today and the feeling was that we can either wait for him to “get on with it” on his own strength or we can try a 10 day steroid treatment in order to have it potentially quicken the pace to non-ventilation support. The risks with both options is that the waiting method can lead to developmental delays and lung issues in the future whereby the steroids can lead to similar developmental delays despite them having altered the prescribed treatment to be less problematic than the way they did it before. Brienne and I are to make this decision, but we are both still a bit muddled on the idea. On the one hand, I want Max to be off the ventilation sooner rather than later, but don’t like the idea of steroids being used if they don’t absolutely HAVE to be. The fact that we’re given a choice makes me think that both options are equally crappy, so we’ll have to ask a few more questions to get a better feel for what we feel is best for Max.

It's all about the tubes

They tried to extubate him today. He dealt with it fairly well for about 45 minutes. The thing to remember here is that breathing on one's own is very different, and much more difficult than breathing with a ventilator. At around the 45 minute mark, Maximilian decided he had had enough and started having issues breathing on his own, whereby his heart rate would dip dramatically and his oxygen saturation would diminish substantially. None of this is out of the ordinary, but it was happening so often. required so much attention and was just so stressful on the little guy, that it was best to re-intubate him and put him back on the ventilator. This is definitely one of those steps backward after the few steps forward. He had a good college try at least. We'll now have to wait for him to regather his strength and get accustomed to breathing a bit better before they try it again.

It's merely a flesh wound.

We called this morning. He had a bit of a head wound. Well, wound is a harsh term. He is in a very humid, very hot environment and his head started to chafe a bit from being in the same position for so long. They’re giving him polysporin and are not worried.

We went to visit him. He’s awesome. He’s wearing clothing now, a tiny sleeper that looks cute on him and seemed very comfortable. He was still hooked up to the ventilator but was doing most of the work on his own. When he dips below 85%, he brings himself up without any help and this is a good thing. It’s still not at the point where he can do it all on his own, but they’re thinking that they’ll probably extubate him tomorrow at any rate. Hopefully,, tomorrow we can visit him longer as today was a bit of a quick visit.

PSV again.

Max is back on PSV today and staying around 27% FiO₂. He was tolerating it quite well. They’ve also given him steroids and will continue dosing him every 6 hours for a full 24 hours, where they’ll then try and weaning him off this type of ventilation all together. They’re talking about extubating him tomorrow (the 5^th of July). We didn’t do kangaroo holding today, but we did hang out with him for a while He’s super cute and seems to have a lot more energy than a week ago. Every time he hears his mother’s voice, he seems to try and find her by opening his eyes. He’s adorable!

A bit of weight..

Max is doing rather well again. Brienne got to hold him for a while tonight and we spent a good deal of time with him. He’s strong and breathing better (usually between 25-30% FiO₂). He poops a lot and pees a lot and he’s starting to look a bit chubby. Otherwise, it’s all normal and routine with him.

Pull pull pull

Unfortunately, we only got to visit him briefly twice today. The first time, we got to see him all snugly and cute in his little burrito-wrapped blanket. There was nothing major to report, as he was pretty much doing the same as before. The difference this time is that they’re lowering his O2 levels a bit more. Hopefully, this trend will continue, and hopefully, his weaning will go well.

When we visited him the second time, we had to wait outside for a while. The little guy pulled out his tubes again. Which is both funny and slightly frustrating. Mostly funny though. Otherwise, he’s doing well, they didn’t have to put him about 30% on his O2 after re-intubating him, so that’s a good thing. He was very alert when we were there, and I wish I hadn’t had to go to work so we could have enjoyed his company some more. His nurse mentioned that he had a “bug” but they weren’t sure which one yet. They don’t seem overly concerned though, so neither am I.

The Lull

Max was doing well today. We’re back to a “news lull”. Ultimately, he’s still doing rather well, with his breathing needing to get further along before they start to wean him again. He does well for his age, but he has a while to go before he can do it all on his own. I changed him for the second time today. He pooped all over my hand. He’s adorable.