Wednesday, June 30, 2010

Bubble Boy Max

Max was in a bubble today. Well, not a real bubble. In testing the yeast infection on his bum, they also found evidence of MRSA being colonized on his skin. This, in and of itself, isn’t a huge issue, but it means that they have him in a more controlled environment which is also separated from other babies in the NICU. They’ve put up a see-through, heavy plastic curtain all the way around his area in his pod and we now have to wear gloves and gowns while visiting him. We have been told that kangaroo care will continue though, so the MRSA issue isn’t a huge one. It’s basically just that they know that it’s on his skin, so they need to do their best to prevent it from potentially getting out and infecting both him and others. He is not “infected” though, he just has it on his skin. Which is normal. In breathing news, he is still taking his time to getting to the point of breathing on his own. There is currently talk about him getting some steroids to help his lungs along a bit. They’re not really concerned about it, they just want to give him as much of a fighting chance as possible here.

We went back to the bubble later in the evening so that Brienne could get some of that lovely kangaroo holding done. He tolerated it well again. He was perfect up until he soiled himself. He really does not like having anything in his diaper. I’m happy to say that I totally knew what was going on. Once he was back in his incubator and changed, he started balancing out again. Brienne held him for a bit over an hour.

Tuesday, June 29, 2010

Like a cuddly G.I.Joe

We saw our little guy briefly today. He was doing well again. His bum was still a bit pebbly, but he was feeding well and breathing well enough with the ventilator’s help. Nothing really new was told to us. He’s still ridiculously cute, and he squirms very well. Brienne enjoys his Kung-Fu tm grip immensely. The little guy was trying to strangle her finger tip like he was a mongoose and her finger was a king cobra.

Monday, June 28, 2010

Yay Boredom!

We went to visit him late in the evening today. We got there and they had just re-intubated him as his previous intubation was becoming loose and the band-aid used to fasten it to his head had become rather saturated in his spit. He was quite fussy when we got there, but once the nurse changed him, he started to calm down again. Because of the “trauma” of the whole reintubation, we did not get to have Brienne hold him today. We did, however, get to watch him be awesome. His PICC had been removed as he no longer needed any fluids via IV since he’s now officially up to 10ml of EBM. We’re pretty stoked with this. He had another X-Ray today, and his lungs looked a bit hazy, but still on their way to being healthy. His FiO2 requirements were set in the low-mid twenties, so they will most likely switch him back to PSV ventilation in the next few days. All in all, today was another “boring Max day” which means that he’s doing well and we’re breathing easily.

Sunday, June 27, 2010

More holding.

I called at around 5am. His news is basically the same. He’s breathing a bit better, and he’s eating well. Ideally, this will continue.

We visited him at 6:30pm. The nurse was out for supper, so we didn’t get a lowdown of what was going on with him. We ourselves went for supper and are planning on returning later. He looked really comfortable and beautifully warm. He’s adorable. He seems a lot bigger than when he was first born. His ears are slowly growing into themselves, and his face is getting more “baby-like” every day we see him. Hopefully, when we visit him later tonight, we’ll have good, “boring” news and will be able to have Brienne kangaroo care with him. He’s up to 7.5ml of EBM. J

He’s up to 8ml now. Brienne held him for over an hour and she was serene and beautiful the whole time. Maximilian took very well to it again and only had issues when they had to let him back into his incubator. He’s got a bit of a rash on his bum again, but they’re treating it the same way as before. He’s doing well today, as is his mother.

Saturday, June 26, 2010

Breathing better

I called in the morning, and the news was the same. Which is awesome. Boring updates are the types of updates we want, more or less.

We went to visit him and he was, again, doing really well. He’s tolerating his feeds still, and he’s reacting well to everything except for excessive handling. Which is fine. If his biggest issue right now is that he just wants to relax, I’m pretty happy with that. They also changed his breathing settings to PSV which means that he’s doing a lot more of the breathing on his own, but that it only helps him out if/when he really needs it. I like it. We didn’t get to do any kangaroo holding today because the nurse in charge of Max would not be able to pay enough proper attention to us during that time. We will try for later tonight, but will not be upset if we have to wait until tomorrow.

Friday, June 25, 2010

Hold on, little lady...



I called the nurses at the NICU at around 4:30am today. He’s doing really well and is peeing, pooing, eating and breathing properly. His lungs are still a bit wet, but it’s not something they’re worried about. There’s not a lot new to say, which is great.

We went to visit him this afternoon and he’s still doing well. He weighs a bit more, but there’s nothing much else going on. All in all, Maximilian is still doing rather well right now, so we hope that it continues like this for a while. His feeds are up to 3.5, and he’s doing what he needs to with that. In what will seem like no time at all, he will be at 10ml and we can start discussing changing his ventilation. We’re still very proud of him. We took some pictures. We’ll be taking more later.

Brienne got to hold him for a while again tonight, and she really enjoyed that. Max seems to really take to her. He was doing very well again tonight with everything in general, so I feel awesome about all of it. He was wearing a really cute toque that made him look like some type of preemie gangsta. Overall, he’s moving along the right path and should hopefully continue to do so. The last feed he had was at 4ml, so that’s pretty awesome. Today has been a great Max day. I’ll be calling in the wee hours of the morning to further inquire about his progress.

Thursday, June 24, 2010

Adorable, Comfortable

I called in at around 3:30am and Maximilian was still doing well except that they had to stop his feeds temporarily while they waited for a bowel movement. It’s not worrisome, as all the signs point to his GI system being good, just “stuck”. They’re giving him a suppository in the hopes that it speeds things up a bit. I love the little currently-non-stinker.

We went to visit him today. He looked adorably comfortable. He pooped after the suppository and was doing very well today. Brienne got to change him. He’s apparently peeing so much that he has to wear diapers that are obviously bigger than they normally should be for someone his size. So once again, we’re riding the “Max is doing well” high. He’s back on protocol feeds. They had to start the cycle over again, and will hopefully be up to 10ml sometime by the first little bit of next week. If he manages to tolerate all of that, then the PICC line gets to come out.

We went to visit him again and it was phenomenal. He’s doing really well with everything still. The best part about tonight was that Brienne got to kanga-hold him for more than an hour. He fell asleep and tolerated it beautifully. It’s times like that, that I wish time would be able to just stand still forever. It was bliss.

Wednesday, June 23, 2010

Slow and steady.

We saw Max today. It was such a good day for the guy. He’s very close to room Oxygen, which means that he’s well on his way to not needing the ventilator. They’ll still want to take their time with it, but at least he’s making progress. He has gained a bit of real weight too. He just seems a bit more filled out in general, and his weight was at 870g today. They also have him feeding with 2.5ml of EBM and have him on very few drugs. The Morphine is gone as are the two “amines”. They have him taking some minor drugs to “take the edge off” here and there, but even those should be done with soon. They removed his catheter and they say that he’s doing a lot of stuff very well on his own. All in all, we had a good day visiting him. He’s just doing so well today that I’m riding the high even more than the last time we visited him. I also got to clean his little mouth today. I’m still quite worried about doing a lot of hands on stuff. I wonder if I can be gentle enough with him and his tininess. Either way, it was great to get to do that. Someday soon, I will change his diaper.

We went back late in the evening. Max was doing really well again. They had him up on the ventilator’s Oxygen percentage again, which was expected as they’re slowly making changes to his ventilator settings with the hopes that he continues onward down the path to not needing it. He was on his tummy when we got there and they had him up to 2.5ml of EBM, with the expectation of bringing it up to 3ml shortly. He opens his eyes every now and then to look around, and he seems to be less cranky about his surroundings. Today has been a great Max day, so I’m still going to ride the high while I can.

Tuesday, June 22, 2010

Eating again.

We saw little Maximilian again today. He’s further progressing along the right path. His vital signs are good, his heart is doing what it needs to be doing and he’s still as fussy as possible J They gave him some more dobutamine and dopamine because everything now is an attempt at fine tuning the balance between his body doing its thing on its own and trying to minimize the stress this causes. Because of this, they sometimes give him drugs to help him with certain processes so as not to anger his little body too much. He is on the good path though, so that’s amazingly good. It’s interesting how much of a change can happen in just a few short days with this little guy. We are cautiously optimistic about his short term progress and also cautiously optimistic about his long term progress.

We visited him again just before 8pm tonight. His blood gases were good, his pee output was good, his poop output was good, his ability to cope without as many drugs as before is good. All in all, the news tonight was good. They’ve started feeding him 1cc of EBM again, which is awesome. Hopefully, this means that we’ll start seeing him gain a bit of weight in the near future.

Monday, June 21, 2010

The road to...

We saw The Wee One twice today. The first time, he was doing more of the same. The second time, he had been weened off everything but the morphine and necessary lipids/iv nutrients. He has a bit more difficulty peeing than before, but it’s not as critical an issue as it had been earlier. Hopefully, everything will even out even better and he’ll be able to pee freely again soon. They are catheterizing him again tonight to see if maybe his plumbing is just sluggish due to all of the other changes he’s been going through. He’s amazingly lovely and awesome.

I called there just before midnight. He’s peeing well into his catheter, so it’s possible that it’s just the laziness of his muscles due to the all the medication that have prevented him from forcefully peeing. The night nurse (Darlene) told me that he’s great until he’s handled. He’s turning into be quite a fussy little monkey. He’s still adorable and awesome. All of his gases and vitals are looking good (except when he’s kicking up a fuss), so there are no worries tonight. He’s still not back to pre-PDA surgery levels of comfort, but he’s still on his way.

Sunday, June 20, 2010

Better news.

We called the NICU tonight and spoke with a very spunky nurse who informed us that Max was doing really well in terms of all of his progress. He was still peeing plenty and his heart rate and blood pressure were doing what they wanted them to. Soon, he’ll hopefully be off of the epinephrine and they will then start decreasing the dosages of his other drugs. He’s also losing a lot of his water weight throughout this time, so everything currently looks hopeful.

We visited Max for a few hours today. There wasn’t a lot of news. Essentially, he’s continuing to do well and is progressing well in the way they want him to. He’s still peeing well, he’s off the epinephrine, they’re starting to wean him off of his other medications, his lungs look better and his gases are great. I got a few gifts from him and they’re cute and awesome. We hope that he continues to progress well throughout the next few days. His face looks a lot less puffy than it did yesterday, and most of the fluid still built up is down at his torso. It will still be a bit until his body is done dealing with all the excess fluids, but we’re happy to see him going in the right direction. When I asked the nurse how common this extreme reaction to the PDA surgery was, I was informed that it’s not that common to have it get this bad, but that it’s not unheard of. The good thing is that he seems to be responding to his treatments really well and that he seems to be on the right track. When he’s done with this mini-ordeal, they can start worrying about making him grow like a proper baby is supposed to. I can’t wait to see him chub up a bit.

We saw our little man again tonight. He was off the dopamine this time, which means that he only has his regular lipids and iv stuff plus the other dobutamine drip. He’s still responding quite well to everything and only really gets annoyed when he gets handled and/or sits in a wet diaper for too long. It’s so much nicer seeing him when he’s doing this well.

Saturday, June 19, 2010

More waiting.

We called the NICU at 12:20ish to see how he was doing. His blood pressure was doing better but he still has to pee. That’s pretty much the only change, albeit it’s a positive one right now. I will call again before going to bed to see what’s what.

I called every few hours throughout the night. He’s doing a bit better than before but is still in critical condition. He has started to pee very slight amounts, and his blood pressure is staying stable for now. I hope he pees more.

We went to visit him and we got good news about his condition. He had started passing a bit more urine than before, and it was actual urine, and not just concentrated urea. The doctor has said that, should he continue on his current course, we should see him get out of it. Due to the severity of the critical issues though, we cannot tell if there are going to be any long term consequences as of yet. We will not know for a while. Either way, I’m still ecstatic that he’s getting the care that he is. It’s nice to know that professionals are doing their best to help him fight the craziness which is his current life.

At 4:10 we called the NICU and were happily told that the little guy is peeing a lot and very well. All of his vitals are what they want to be seeing, and all of his blood gases are better than the last time they checked. We are happy about this minor victory, even though we know the battle isn’t totally won yet. Still, being so happy about our little guy urinating feels off in a great way.

We went to visit him tonight and his great-aunt Shelley met us there. He did well today with the peeing and his vitals are all going the way they want them to at the moment. There is always a chance that things could reverse, but he has definitely made forward progress, so that’s a good thing. They’re going to stabilize him more and wean him off of his medicines for the next little bit. Once that’s done, and he’s off of his medications, they’ll start back up with the EBM cycles. They’ll be starting at the 0.8ml (assuming his weight is birth weight) and moving their way up in the same way as before. I’m super happy with the results for today and I’m going to bathe in this feeling for as long as I’m able to.

Friday, June 18, 2010

So this is one of those "Bad Days"


We went and visited Max today. He wasn’t doing the greatest. His blood pressure was off kilter and they have him on meds trying their best to get it to a point where they want him. Essentially, because of the drastic change in his physiology due to the PDA procedure, his body isn’t adjusting itself as well as it could or should. They want him to pee so as to indicate that his pressure issues are getting under control. Generally, he’s been great at peeing, so it’s a mild surprise that he isn’t doing so more like he’s supposed to. On the plus side, his bowels have started working properly post-op, so that’s something. One of the doctors said that he’s stable but in a “critical post operative” situation. I’ll take that as a reasonably OK sign for now that he’s at least not crashing and not losing any major battles. He’s not currently winning the blood pressure battle, but it’s still within a tolerably controllable set of parameters. I hope little Maximilian finds the necessary strength and energy to push through this sooner rather than later. He’s been so strong, and we continue to ask so much of him. I wish I could give him all my strength.

Also, we bought him a stuffed bunny. It’s not his first stuffed gift, but it’s the first from us. And it’s cute.

We called the nursing station at around 7:15 tonight. His blood pressure had been brought up from 20/22 to 24/26 which is closer to the 28/32 at which they want him. He’s responding better to the drug regimen they have him on and they seem more optimistic about what’s going on with him right now. He still hasn’t made water, but often, when his blood pressure gets to the right spot, children will pee. If he gets stable enough, and within the right parameters, they may be able to give him some drugs to make him urinate then.

We saw Max again tonight. He was doing a bit better than before, but was basically the same. He had a few trickles of urine, but no outright urination. The worry there is that, if it doesn’t evolve into actually passing of urine, then it may result into acute kidney failure. This is as bad as it sounds, but, if dealt with accordingly would not damage him permanently. Still, it’s not a good thing. The kidneys are responsible for so much, that them failing can lead to many other physiological issues.

Thursday, June 17, 2010

Post-Op Visit

We just got home from having seen Max after his surgery. He was out like a light, but was otherwise doing well. All his vital signs are pinging and ponging the way they should on the machines. The doctors said that everything went as expected and hoped and that there were no complications with the surgery at all. It was pretty much a textbook case of how one of these procedures should go. He’ll have a few days of catching back up with himself while he heals, but he’s expected to come out of this as if nothing had happened – he’ll be able to begin his normal development now.

We visited him again tonight. He’s still doing well. Basically, all of his vitals are the way they want to see them. His chest x-ray already showed some improvement in his lungs, so that’s a good sign. Ideally, he’ll start breathing better than he has been in general and his need for a ventilator will diminish over the next while. We’re already ridiculously proud of the little trooper, so he can take all the time he needs to reach this next goal. We love him.

Wednesday, June 16, 2010

More News about his PDA

Today, we were told that Max would be operated on at 10:15am on Thursday, June 17. This means that we have to be at the hospital by around 9:15ish in order to meet with the surgeon and give our consent. The procedure is simple sounding. They perform an incision in his back/side area near the heart, go in with some forceps and a titanium clip and clip the duct shut. That’s it, essentially. One of the doctors said that, at this age, children grow so quickly that their skin repairs super fast. The surgery is the most performed one in the NICU, so that’s another odd blessing in disguise. They do so many, that we can assume they’re ready for any and all issues that could arise during the surgery. And again, the surgery itself is to help a natural process along that his premature body is having issues dealing with. It’s not fixing something that’s gone wrong. This, in and of itself makes the surgery less of a “Big Deal” and more just something that needs to get done. We both are looking forward to the progress he makes afterwards.

Tuesday, June 15, 2010

Rafael's Birthday

Today, we were informed that Max would indeed need to have surgery to clip off the PDA. This will allow his lungs and heart to continue to grow and strengthen properly. It’s kind of crappy news to hear, but we were ready for its eventuality. The surgery is tentatively scheduled for Thursday. We have high hopes that it will go well. The bad news days have started, it seems. Hopefully, our spirits, our hopes and our general moods will not be dampened too much by the oncoming onslaught of such negative news. I will be here for Brienne as best as I can throughout this time. I hope I am strong enough to carry us both when necessary.

We went to visit him, and I told him what was going on. He seemed to be ok with the idea and was in reasonably high spirits today, from what the nurses told us. I hope he deals with the extra stress well. I’m already ridiculously proud of his fighting spirit and just hope that he has enough fight in him to go through the procedure without any real issues arising. I am still hopeful, and still trust the people at St. B immensely.

We went there again tonight. He was doing the same as earlier. Not as well as previously, but all these minor hiccups are expected when the PDA issue is still present. Hopefully, his lungs and everything else will strengthen and grow properly once the surgery is done with. Brienne isn’t doing the greatest. She feels like she wants to do more to protect him. There are few things I can say to make it any better though. Hopefully, we get to a point where we start taking this all in proper stride. As of now, everything still seems so surprising to us, and I don’t think we’ve moved on past the initial shock as much or as well as we would have liked to. Hopefully, we will find that necessary strength, and that necessary ability to deal with the issues we face up ahead. Also tonight, Maximilian’s IV got taken out (by him, of course), so we left with the nurse about to put it back in. It’s a possibly lengthy procedure depending on complications, so we’ll be calling later to get some information on how it went.

I called sometime shortly after 11:30pm to see how it went. They had to poke him a few times, but they finally managed to get the IV placed into his scalp, behind his ear. I don’t like the idea of them poking him so much, but what other choice did they have? The nurses hope that his PICC line will get inserted sooner rather than later. They prefer it to an IV as the IV’s tend to overstay their welcomes if they’re in there for too long.

Monday, June 14, 2010

A few weeks of thought...


Today we saw Max again and it was one of the days we had to inevitably expect. None of the news was outright horrible. Some of it, however, was less than what I’d consider good. His white blood cell count is higher than they’d like to see. Often, this is due to an infection. They won’t know for sure until they get back the blood cultures they’ve started as of this morning. The other news is that his murmur is still present. This is not unusual, but it could still potentially mean that surgery is necessary. I honestly worry about this surgery. Not because I don’t trust that the doctors will do the greatest job possible, but because I don’t like the idea of little Maximilian going through so much stress so early in his life. His lungs still aren’t doing as well as we’d like (again, all normal for his stage), but they’re hoping that once his heart issue is resolved, so will his breathing issues. The surgery itself means a bit of a delay on his total recovery time regarding his breathing and everything else. They had him up to 2.5ml of EBM (expressed breast milk) today and he hasn’t brought it back up. This is awesome, because then it means that he’ll take on a lot more of Brienne’s passive immunity and will be that much more ready to fight the harshness of his environment. Speaking o f Brienne passing things on to him.. Today’s biggest news was that Brienne enjoyed her first bit of Kangaroo care with Maximilian. She got to hold him against her bare chest for about 20-25 minutes. She was beyond pleased. He was so tiny compared to her, but she kept him warm and calm throughout the entire thing. The little one fell asleep almost immediately and was a cute little, noodly sleepy head by the time they were done. It made me so happy to see her hold him this way. As a father and husband, I can’t do much right now other than support Brienne as much as possible and hope for the happiest things possible. Today was definitely a happiness filled day. I loved seeing Brienne’s eyes as she held him. It honestly made me envious, but it was the type of happy envy that I would never wish to take away from her. She’s done so much and definitely deserved such a great moment in her life.

Friday, June 4, 2010

The Story Begins.



On Wednesday, June 2nd, I came home early from work and decided to spend some time with my wife. She was having some back pain, which wasn’t uncommon for her in her pregnancy. After a while, the pain increased and she felt like she was having what could be described as contractions. This was at 25 and 5 days of her/our pregnancy. We called Healthlinks and they urged us to go to an emergency room as soon as we could. We decided on St. Boniface hospital due to its proximity to our home. When we got there, after a very short wait in the triage department, we were sent up to the 3rd floor to be admitted into the Obstetrical triage department. It was told to us that Brienne was indeed in some sort of labour. They promptly gave her a shot of steroids (to strengthen the unborn child’s lungs) and gave her some medication to stop (or at least slow) the contractions. They checked her cervix as well. It was not nearly as solid or as large as they would have hoped for. They then gave her morphine and her contractions stopped for the day. We spent the entirety of Thursday in the hospital resting, getting ultrasounds and having other tests done, with few issues until 9pmish. At this time, her contractions returned and we were moved to an LDRP room so as to have all the necessary staff at our ready should our child decide to come that early. Sometime just before 2am, the contractions started getting unbearable and after a quick exam, it was decided that Brienne was going to deliver regardless of our wishes, so they prepared her for a c section. Unfortunately, this was the only option as the baby’s legs were right up against her cervix and they had to rush as they could not have the child come out feet first at this stage of their development.
As early as it was, at 2:46am, after a quick and very professionally exacted procedure, we had a newborn child in our world. We heard a small cry/squeak coming from the child’s mouth, but unfortunately could not see our progeny. The doctors and nurses had to rush the newly born child to a different room where we’re told they had to resuscitate our little one in order to get them to breathe as quickly as possible. We were shortly told that we had a boy. He was born weighing 1lb11oz (or 760g) and he was 12.5in (31.7cm) long. We named him Maximilian Agostinho Mayer Santos. This child now had the beginnings of an identity. We were given two Polaroids of him in his incubator. I have to admit, the pictures scared me, but they were at least of a child we now knew to be our own. We had created a person, a small being wholly dependent on our love and on the professional care that a host of nurses and doctors were going to provide him for the next little while. I was the first to see him and I have to admit that I was taken aback. He was quite bruised from head to toe. He was puffy around the eyes, his ears looked squished and his legs and torso were mottled black and blue. Even with all this said, he was astoundingly beautiful. He was a perfect little man. He had all of his fingers, all of his toes, a beautiful little nose (definitely his mother’s nose) and a great overall “shape” to himself. He looked like a small baby more than I could have expected, and he was beautiful – he was also extremely bruised due to the way they had to pull him out of Brienne’s uterus. He had tubes in his umbilical region, and had tubes in his mouth. These were to control his breathing, nutrients, medicine and other things that needed to be put in and taken out of his body. The overall feeling I got though was that he seemed “fine”. Well, as fine as one could in his position. He was comfortable, he wasn’t fussing any more than he should have and his vital signs were what they should have been.
The week after his initial day was kind of a blur for me, unfortunately. We would visit him a bunch, Brienne would express milk for him and we’d deliver it. In no particular order, he was given milk (and reacted well to it, except for when they upped his dosage and he vomited some of it back up), was jaundiced (and reacted well to the treatments for it), had an ultrasound of his head (which came back as good as one could hope), had a couple of collapsed lungs (which are expected when one is as early as he was), and has had 2 transfusions (which are normal and necessary for children at this age). As of Friday the 11th of June, they removed his umbilical lines and let him go naked for a while due to a yeast infection on his poor little bum.
Right now, he’s doing well.

My Very First Blog

Welcome to Maximilian's blog. We're hoping to use this as a way to best communicate what's happening with Maximilian. Comments and questions can be left here as well and we'll gladly answer anything we can.

So far, Max's story is as follows.

He was born on June 4th, 2010 at 2:46am. He weighed 1lb11oz (760g) and was 12.5 inches (31.75cm) long. Obviously, he was quite early. His original due date was September 10th. I guess that, unlike both his mother and father, Maximilian wanted to be early for everything.

The first day started off a bit hairy. Brienne had been in labour, off and on, from Wednesday the 2nd of June. She was tired and sore and doing her best to keep Max from being born so early. Unfortunately, despite her ridiculously valiant efforts, Max needed out and the staff performed an emergency C-Section on her. He was born bruised and in a state requiring immediate resuscitation. Happily, the staff did a wonderful job with his resuscitation and he was then placed in an incubator at the St. Boniface NICU.

Rafael was the first to see him. Maximilian was a tiny little thing, and was the colour of a bruised tomato. He was a mottled, purple and red wee little baby. He looked well proportioned, but with little body fat. The next 14 weeks were to be the fattening weeks in utero. But the news of Max's general health was good. He was by no means out of harm's way, but he was very much in a state of being able to handle the work he had to do over the next many weeks. After a bit of recovery time, the hospital staff brought Brienne, in her mobile hospital bed to see the little guy. Rafael admits that this was a very beautiful time for the new family unit.

This blog will do its best to express his journey as he goes from a wee little premature baby to an NICU graduate and beyond.