Sunday, May 31, 2009

Finally seeing some progress

Such a good last few days. Seriously, very happy with myself for all that has been accomplished over the last few...and how much others (note: Riley) have accomplished.

So, in the most important of the news's, Riley is still doing great on the high flow. He has been on it for handlings for the last 5 days in a row, and each time they have weened his oxygen down, and he has continued to rock it like a superstar. As of today's hold, he was down to 37/38% and kept himself around 94/95% saturation. Our nurse (our primary) was on today, so she has put in a request that he go to "as long as he can handle" for the high flow. Both yesterday and today, they put him on the high flow before the handlings, so he was on it for longer than just the "one hour during handles" that is currently written in his charts. Today was a busy day for him, too. While he should have had his shots (he is 60 days old already...seriously, how did that happen???), there was no prescription ordered for it, so he will be getting that tomorrow. However, when I got there, Andrea had him flipped to high flow, and we had a bath. He is too big to fit in the salad bowl any more, so they are going to have to move over one of the baths from Level 2 for him. But it was wonderful for me. And look:

Mad Scientist Hair!!!

And while we did our cuddles today, once again we did the NNS. Each time, he has been really good with handling swallowing the milk that releases when he first latches. And today, he actually got about 3-4 good size mouthfuls swallowed. I was so very happy about that (of course, that was in addition to his feed of 58 mls). And the results after 4 swallows and 20 minutes:

He spent the rest of our cuddling time like that...out cold and using his former snack provider as a pillow.

So, the other day my daughter and I went out to the store by our place, and crossed the path of the local thrift shop. It is a small, hole in the wall place, with "Bibles for Missions" written in HUGE letters on the front window. Needless to say, being agnostic, and having had a bad experience of an overly pushy devout woman last time I was in a thrift shop with a religious connection, I was a little iffy, but thought they might have a comfy chair that I could pick up cheap.
Well, I didn't find a chair, but check out the other goodies I stumbled upon (for a total of $9.00):

I plan on making myself a chunky vest with the red. With the other colours (the Sirdar balls), I am planning on making a bunch of hats/booties/mittens for Riley. One of the balls has a purple mixed in, and I am going to make Ammy a new winter hat with that (thinking I might just alter the Aviatrix pattern to fit her head). Speaking of the Aviatrix hat:

Yes, I have finished the second of these hats, and have started on the matching booties.
Tis's late and I have to pump then hit the sack.


Wednesday, May 27, 2009

We are cleared for take off

So last night, I set Riley's new sweater to block, and was kinda wasting time, being very reluctant to work on the second sock for my hubby since I hate doing a second sock (yes, I suffer greatly from one sock-itis), when I stumbled upon the aviatrix baby hat which I saved on Ravelry eons ago. I LOVE THIS HAT. Seriously. I started it last night during my 1:30 a.m. pump, and look...this was it this afternoon:

So adorable (yes, I will be making more and in a multitude of colours), and such a quick knit. I think I have a new favorite for gifties for friends who are expecting.

I have also realized that I horrendously over estimated the size of Riley's sweater, and have enough of the blue wool left over to make a matching pair of pants. Yes sir, I think I will. Am thinking I will alter the pattern to have a sailor's bib, since there is nothing cuter than a baby boy in sailor's pants. :)

On the topic of my little man, we started NNS yesterday. They put him on high flow (which he rocked out at 97-99% saturation the entire time) and let me have at it (or him...hmm...not sure which that would be). Anywho, I was super impressed with our little rockstar, since he got a little bit of milk (it was bound to happen), and didn't freak out or choke, but calmly swallowed and continued on desat, no cough, nothing. Just swallowed and kept on breathing. And good lord does the boy have a good latch. He fell asleep after about 20 minutes, but if I tried to move him away from the nipple, he would immediately start sucking again just so he could stay...then would promptly fall back asleep.

AND, since he did so well on the high flow, they are going to start putting him on it at least 2 times per day for one hour periods, just to get him used to it. From there, they will try to change it up and get him on low flow for one holding, and high flow for the other. Right now, they are happy that he is able to handle it without the constant pressure provided by the CPAP.


Saturday, May 23, 2009

Frustrations and General Crud

What an interesting last little while. For starters, I still hate EI and their inability to process an application even AFTER they have given themselves a 10 day grace period. Seriously...we are now on day 46 of the 28 day processing period. Fun, eh? I suppose different areas of the government will always remain a part of the government and I shouldn't expect overmuch with them. Side note, really interesting article that I think everyone should read here. There is a lot about this proposed HST that most people are completely unaware the fact that services we don't currently pay the PST on (i.e. gas, home heating fuel, water, hydro, used cars, government and city services, real estate fees and many other professional services) will now have the 8% PST tacked on by default under the 13% HST. Yes, this bothers me. I am not one to discuss politics or the government, as I honestly believe that they are all as bad as one another (seriously, if I am raising my children not to lie and steal and cheat, why the hell would I support any entity or group of persons who have such a long history of lying, stealing and cheating - "better health care"; "shorter wait times"; "more support for families" - any of these ring a bell??), but I think that everyone should be made aware of these goings on, as we do have a tendency to bend over and take it when the government announces some new tax, or any sort of cut to services, because we feel we can't do anything to change it.

Sorry, now that that rant is over, let's move on to nicer things (and some not so nice things). In the world of Riley, this has been one of the more frustrating weeks. Our little man is a lazy boy. I fully acknowledge that. If you read this blog regularly, you know that he was listed as being biphasic dependent for ages before our primary nurse decided that she didn't care if he sent his saturation bells and whistles off, he could handle it, and was being lazy and just not wanting to. She shut his biphasic off, and yes, he complained and alarmed for a day before settling himself when no one would provide him with the part of the CPAP that would breath for him. The last two weeks, the o2 on his CPAP has remained between 30 and 35. None of the nurses would give him a chance to do anything lower than what he had been on the day before, even if he was saturating high on what they had him at. And he wasn't being allowed to try the low flow again, since the RN we had one day decided to try him on it while no one was around (he sats higher when being held) and he didn't do so well...which also put a minimum 2 day lapse on his next try, which put us into the weekend when no RT was around. The boy should have started NNS already, which he can't do on CPAP.

And we kept being told he was "supposed" to be at 34, 35, etc. Well, where the hell did this "supposed to" come from? No one could answer. And it became even more frustrating when we came in on Tuesday and his RN was changing the bedding and had accidentally knocked the o2 down to 24. I didn't say anything, as he was holding his own at that level. After about 10 minutes, the other half came in and commented about him being down to 24. Of course, the nurse immediately jacked him up to 35 because he was "supposed to be at that level". When I asked what she meant by he was supposed to be at that level, she just kept repeating it, and telling me he couldn't handle any lower. Um, I just stood here for 10 minutes watching him handle 24%, so don't tell me he can't handle it. But fine, whatever. I am not going to get into an argument with yet another new nurse this week. Then, as I am sitting there thumbing through his charts to see what is going on and if the results have come in from his follow up head ultrasound, I noticed that the drs have listed him as being "CPAP dependent". Um, why? Because the nurses don't know him (he had a new one every day for the last 7 days at that point in time), so they just kept him on what he had been on, and didn't give him any time to recover before turning the o2 up? Also noticed that along with the head ultrasound, they did an abdominal one, and he would have to see a surgeon after discharge for a urachal remnant. What?? I didn't even know that he was getting an abdominal ultrasound.

So, of course, I did what any parent in the NICU would have done. I asked to speak with a dr. Unfortunately, they were all in recess. So, we asked that a note be left for them to call us, as we wanted to speak with one ASAP. When we called in later that evening, no note had been left. And, of course, Riley had started to desat, so he was now up to 35% o2. I ended up going in the following morning first thing, and had a long, long talk with our dr. He explained the urachal remnant that Riley had (which was something he had never even heard of...not the U.R. itself, but the type of one that Riley has developed...a failure of one of the tubes attached to the umbilicus to dissolve so it is still supplying blood to the outer belly button - which is why his belly button hasn't fallen off yet) and that the surgeon was just a precaution...they want to see if it will dry up on its own, but if not, they may have to operate on his belly button to remove the tube. His brain bleeds, though, seem to have been reabsorbed into his brain, with trace amounts of blood in his occipital lobe. Then we got to the breathing issue.

Thankfully, as he is Riley's actual dr, he knows what he is like. He completely agreed that if he is holding his own, there is no reason for the nurses to bump his o2 up, and he would mention that at rounds and to the other fellows in case we ever argued with the nurses regarding protocol vs. what our son is like. He also agreed that since the window for the time that Riley should be starting the NNS is coming near its end, getting him onto something other than the CPAP so that he can start doing that is a necessity...even if it means flipping him to high flow as opposed to low flow. So, starting Monday, I will be able to start the NNS. :)

Here is the latest picture of our little tank (2600 85 gram gain from yesterday - approximately 5 lbs 10 ounces):

In other news, and on the topic of the little ones, my daughter recently wanted to chop her hair off, since she cannot stand getting it brushed (she has very curly hair, and it gets knotted very easily) and it often ends up in tears, even with a half a bottle of detangler. The final result (here's a before and after):


And, in the world of knitting, I am almost done the second sock for the big man. I can't believe that it didn't take me months this pair of socks I made him started in August of last year and finished about a month ago...yeah, I am bad like that). Anywho, here is the updated in progress picture (which will hopefully become a finished product by the end of the week):

I've also started making some headway on Riley's sweater (the skull sweater is not going to fit him when he finally gets out of hospital at the rate he is growing...guess I will have to make another one):

That is really all that is new and exciting. It is damn early, as I was up with the yellow beastie (my lovely medela pump, that is) at 5 this morning. Definitely time for coffee (oh, that reminds me...last picture...this is what happens to concrete when Timmies is spilled on it:

On that delicious note, ttfn

Thursday, May 14, 2009

Cuz this is how we roll

We have rolls! Sorry, I personally think that for a kid that was born weighing 2 lbs 9 oz., being up to 4 lbs 9 oz. is awesome. Especially since he hasn't gotten much longer, so the fat is just collecting. :) And, this weight gain (which puts him at 2070 grams) makes him eligible for a crib. We put in the request last night. So, as soon as one is available (the NICUs only have a limited number of them, which is understandable considering that most of the babies in there are required to be in isolets), he will be moved over into one. He is also being tested on the low flow. He is not doing overly great with it yet, but 15 minutes is 15 minutes. They are going to try changing him to that when he is handling, which usually he tends to saturate high during that time, so I am hoping that will ease him into it. Going to be heading up to the hospital shortly and they will try that today (we have a long day, since we also have the CPR course tonight from 6-9).

I guess in a way, with him still being in the isolet, it is a good thing that he is still on the CPAP, though, as good lord does the boy have gas. Seriously, I don't know how such a smell can come out of such a cute and tiny little bottom. Seriously dude, it is enough to fell a horse at 60 paces. When you can smell it through a big, insulated, plastic box, it is bad.

I have also discovered that we are not immune to having some very dim nurses. We had one call last week to tell us that we needed to bring more milk in. Fine, we did, only to discover that she apparently failed to actually look in the freezer, as there was already a very large bag filled with my milk. But whatever, they just have extra (as our primary nurse said "well, at least you don't have to bring milk in again...ever"). So on Monday, this same nurse calls around 11:30 a.m. telling me that I have to bring in milk, as they only have 3 bottles left. The conversation went as follows:

RN: We have no milk. When are you coming in?
Me: Well, we aren't coming in until later on this evening, for the 6 o clock handling. But there is about a 3 month supply of milk down there already. We brought more in last week when you told us, only to find out that there was a full supply already there.
RN: Then I need your permission to give him formula.
Me: No, you don't have my permission. There is more than enough milk there.
RN: There are only 3 bottles, so I will be giving him formula.
Me: No, no you aren't. You don't have my permission to give him formula. I will call in and speak with the doctor and let them know that no permission has been given, if that is what it takes. Please go look in the freezer.
RN: We don't have any, but I will go check again and call you back to get your permission to give him formula.
Me: Yes, please do that.

****20 minutes later****

RN: I found the milk, but it was in a different compartment. You have too much milk here.
Me: Yes, I am aware, but was told that it was fine; just means that I don't have to bring anymore in at all.
RN: But you are taking up two compartments.
Me: I am aware of that as well, but you told me last week you had none, so more was brought in.
RN: What if someone else needs that space?
Me: Not my problem. I was told to bring in more, I brought in more. This is why the freezers are supposed to be checked before someone is told to bring in more milk.
RN: Maybe you should take some back home?
Me: No, but while I have you on the line, how did the eye exam go?
RN: They found a spot on his eye and would like to follow up in 2 weeks.
Me: What do you mean spot? What sort of a spot? What does that mean?
RN: I don't know. Nothing serious.
Me: Ok, is this a normal, standard follow up?
RN: No, I told you, they found a spot on his eye.
Me: Well what kind of a spot?
RN: It's nothing serious.
Me: Ok, but if they want to follow up on it, it must mean something.
RN: Yes, but I don't know what.

I hung up at that point. Really, not very helpful, especially with the telling me to bring in more milk, then telling me there is too much there. Grrrr! So, it turns out that there is nothing at all wrong with his eyes. I am guessing she looked at the little picture that they drew, and figured since they drew a mark on the eye on the form to indicate where his veins are, she took that to mean that he has a mark there on his actual eyeball. I don't know, and gave up trying to figure it out. These are the days that I miss our primary nurse when she is away.

On other gripes, I have learned to hate the protesters. If you live in Ontario, you know the ones I am talking about. Seriously, you wanna walk and protest a cause, go for it. But don't do it in front of the freaking hospitals...don't block the four main hospitals in Toronto...especially when 2 of those hospitals deal with many children. Do you seriously think blocking people from seeing their ill and, in some cases, terminal children is the way to go about garnering support? Do you think that I will support or at this point even listen to anything you have to say when you are causing what should be a 20-25 minute drive to take almost 2 freaking hours? I just want to see my son, and your group is deciding that standing in the middle of a highway is the appropriate protocol, or blocking all major streets in the downtown core that lead to the hospital is a great way to get attention? Well yes, you are getting attention. But I can guarantee that as far as I am concerned, it is definitely not the kind of attention that you would want. I mean, I look at you now with contempt for keeping me from seeing my infant son. I fear every time we head down because I don't know where you are going to be and in what way you are going to screw my visit with him. And I hate that due to the fact that it is peaceful and only disrupting the lives of anyone trying to get in or out of the city, or trying to get to one of those 4 hospitals, that there is nothing the police can do but assist you in your inane parades. Seriously, if you are stupid enough to stand on a freaking highway, you should not be provided with police intervention blocking said highway. If I was dumb enough to do that, rather than thinking I was making a point, I would expect to get hit, or arrested, or both. And then, after making a drive into the city an absolute nightmare because you have blocked rush hour traffic out of the city, you expect that I am going to gladly take the pamphlet you are trying to hand me through the car window? No. Seriously dude, no.

And then it makes me bitter and turns my thoughts elsewhere. Like do these people not have jobs? I can guarantee that if I took off as much time as this group seems to to stand around and march and block others who are trying to get in and out of the city, most presumably to their jobs, that I would not have my own job for very much longer. And I get most upset at this, as I am sure that there are many of them who, like the rest of this country, have been laid off. And in those circumstances, they are likely collecting EI, for which I filed almost 6 weeks ago, and still no decision has been reached. And I hate thinking like that, but seriously...why the hell are any of them receiving EI to stand around and make life pretty freaking difficult for everyone else, while I am battling with EI for my claim to go through because I simply want to be able to see my son and spend time with him without going completely broke?

Honest, this is not racially motivated anger. I would feel this way at this point in time no matter who the hell it was shutting down the damn city and putting everyone on edge (not to mention making those outside the city fear what they are going to be dealing with if they have to actually come in to Toronto). And I am sure that they have brought up issues that could be taken into consideration at some point (like when they blocked Front Street right in front of Union at rush hour a few months back), but at this point, after all the trouble that it has caused not only me, but others who are trying to get in and out of the downtown core to visit family members, children, etc., I really don't give a flying f*ck at a rolling donut what their damn point was.

Ok, rant over. (Yes, I realize that it will not make a difference and likely this weekend while I try to head down to spend some time with my son, they will screw my drive in over and I should plan to leave here at 6 a.m. to make it down for 3 p.m.)


Wednesday, May 6, 2009

Big Steps, Little Steps

Well, Riley is doing wonderful in the weight gaining department. As of last night, he was up to 3 pounds 14 ounces. His feeds are now up to 35 ml/3 hours. So very happy with that.

Since the infection that Riley went through a few weeks back, his breathing hasn't gotten back to what it was. It is a hard thing to see, especially since he was doing so well with that portion of his development during the first week and a bit of his life. But that damn infection just knocked him back so much. And I know that there is nothing that could have been done for it in any way, shape or form, but that doesn't mean that I don't hate it. Unfortunately, there is no one to rage and rant at for it. It is what it is. He went from being down to low flow to being back on bi-phasic CPAP (this means that it keeps his pressures, and in essence, if they aren't up to what the machine dictates, it gives him an extra breath). His pressures on the bi-phasic have been maxed (which is 10%/7%), and his oxygen has constantly been at 32% (room pressure, what we breath, is 21%). This has been a constant for the last 2 weeks. They have attempted to bring these numbers down, but to no avail. One nurse attempted to bring his oxygen down to 29%, to which he began spelling every 10 minutes. Not good. They had no choice but to bring it back up again. It is just hard, given that he has made virtually no progress as far as that is concerned.

Our primary nurse was in today, and I asked her about this - if the doctors would order another xray to see if there was something impeding his improvement of his lungs. We discussed that, and the fact that nothing has changed at all in the last 2 weeks, which was worrying me very much since the last change was just after the infection - dropping the oxygen from 42% to 32%. So she decided to dropped his pressures, despite the doctor having said that they didn't want to because of the number of spells he was having, purely because she thought he was ready, and she is the one that has to watch over him. He seemed to be doing good on the lower pressures. The numbers are still high (8%/5%), but at least we are finally seeing some movement.

We got the results of his second follow up ultrasound. He still has the grade two intercranial bleed, however it appears to be slightly smaller. They will do another follow up in two weeks time.

He also has his eye exam scheduled for Monday (it should have been last Monday, but someone forgot to put it on the list). His poor little eyes are all puffy still from the CPAP (the CPAP causes their eyes to swell, I would assume due to the pressure constantly being pushed into their sinus cavity along with the lungs). :(

They also requested a physio consult for him, which was performed today. Both Tony and I noticed a while ago that his left foot was sitting a little wonky. I know that it is normal for babies, especially preterms, to have much more flexibility in their extremities, but it has hit a point that it no longer seems normal, and with his spelling, they are not able to position him differently as often as they are with other babies, so he seems to have developed a preference to being frog legged. The physio therapist would like him moved more, even if it is just to his back with towels or blankets at his hips to bring them in a little more. She is also going to start coming in daily at 9 a.m. to work with his legs - doing stretching and such - so that they are no longer showing resistance to the movements.

In other news, it appears that I am a trend setter, but not necessarily in a good way. 4 weeks after I announced I was expecting at work, one of the girls who worked around the corner from my desk announced she was too...4 weeks from my due date (obvious to some, but not necessarily everyone). 2 weeks later, another one. Well, the one who was due 4 weeks after me gave birth last Friday to her son. He was 2 lbs 12 (great weight) and was born at 28 weeks 1. He is, so far, doing great. Got the very last bed space available in all of Ontario (they began shipping babies to Buffalo on Friday as they had no space in our NICUs). She is doing great (got to go see her son for the first time on Monday just past), despite the pain of the c-section. But, of course, they are now watching the one due 6 weeks after me like a hawk. Oddly, she was the one who told me about the other birth. I`ve told her already that she is not allowed to follow suit. That her son has to stay inside her until at least 37 weeks.

Anywho, that is really all. Still sitting around waiting for EI, as my file is still currently under review...there is a backlog, shockingly enough. Not sure when I will actually see anything, but at this moment in time, we have gone through most of our savings (and with our wedding being a few months off, that is not particularly a good thing) and have had to pull our daughter from school-daycare. Flip side to the saving money in that respect is that I can no longer go down to the hospital to spend my days with Riley, and have to find some way of being content with seeing him in the evenings and on the weekends. It is hard, and I spend much of the time calling up to them to see how he is, but, again, it is what it is.

Oh, and on knitting related news, I finally finished the socks for know, the ones I started back in August of last year. :) Finally done. And I am almost finished the first of his guitarman socks. Feeling so productive some times. (I have found that I can balance the pumping bottles on my legs and work on socks without a problem - yeah, I am talented like that.)