The Post In Which KnittyBitch Tries to See the Bright Side

Well dear readers, as you know, my son's breathing has been an uphill issue with the hubby and I. Earlier this week, after questioning if it might be related to the fact that I have an immune system disorder (my body fails to respond when I have a simple infection, and often times does not respond to infection in the "ordinary" course), or other medical problems which have occurred on both hubby's side of the family and mine, as well as questioning what I might have done wrong (if you are or know a preterm mother, the guilt is a common, though illogical, thing), we finally received a straight answer, of sorts. My son has been diagnosed with a chronic lung disease. It is gestationally related (he is over 36 weeks and still requires a fair amount of outside help with breathing), and sadly there is nothing that anyone can do to facilitate his recovery from it. This type of lung disease does not have any hard and fast rules for what can be done to make the child breath. Some things work for some children, some things work for others. But, there is nothing that is constant with any child, beyond time. So, at this moment in time, we are looking at "at least" another 3-4 weeks in the NICU. Because of how badly he responds to low-flow (i.e. the last time they tried him on it, he was at 600 oxygen on low-flow, and destated to 49% in less than 10 minutes), they want to give him more time before trying again. This has hit the point of frustration that is well beyond having anything left to say.

So the above was actually written last weekend. On Tuesday just past, we had our family meeting with the staff neonatalogist and the nurses, as well as the NICU coordinator and social worker at the hospital. At that meeting, we were advised that we were looking at at least 6-8 weeks of Riley remaining in the hospital, before they would look at sending him home on oxygen. They decided that they weren't going to even consider trying him on the low-flow again for another week. He just didn't get it. Both of us expressed our frustration at the fact that we honestly believe that he can do these things, but that he isn't being given a chance to try in circumstances that are optimal for success (i.e. every time that he was apparently tried on low-flow, we were never there for it, despite calling in to tell them when we would be). So on Wednesday, we arrive to be told that they are putting him on one hour low-flow during breastfeeding, and will keep him on the 9 hours of high flow as well. What? What happened to the statements of "he can't handle it, so we aren't even going to try"? Apparently our nurse for the day, who was one who had been there for many years, decided she also believed he could do it, so screw it, she was trying. The RTs agreed with her. So it was done. And he did amazing! They put him at 400, and for the entire hour, WHILE BREASTFEEDING, the lowest his saturation went was 96%. This is, I should mention, much better than he ever does on the CPAP. So the nurse charted how well he did, and decided that she would tell the Drs that he could handle the hour without issue. Thursday, same thing. One hour LF...they had to turn it down to 100 just to stop him from setting off his "over saturating" alarm. All this while breastfeeding. Amazing!

That evening, they moved Riley to the annex (which is a step between NICU and Level 2). It was agreed there that they would increase his breastfeeds and his low flow, since he appeared to be doing great with it. Since they are still operating under the assumption that he can't do it, though, they only increased it to 6 hours and completely got rid of the high flow, but what can you do. So, we are now doing 6 hours of low flow and 2 sessions of breastfeeding a day. Hopefully, since the nurses in the Annex are awesome and have seen how well he is doing and read his past charts (often times asking me "um, why is he still on the CPAP? I don't want to put him back on it, he hates it"), I am hoping that on Monday they will increase his low-flow time.

I must say, though, that I hate (and I mean deep down hate) that the doctors keep telling us that our son can't do things, and that he is not able to handle these things that we know he can, and finally agreeing with us. I have stopped attending the rounds for this reason. They piss me off. I know that they "have the child's best interest" at heart, but I am sick to death of fighting them, and it doesn't amount to anything, so...

In other news, I have started the OpArt blanket for Riley. Not too far into it, but after only a few rounds, you can already see the illusionary effect of it. I have also completely finished his sweater, and several more of the aviatrix hats.

I will post with pictures later, but for the moment, check out the chunky monkey:

June...Already...

Yeah, I can't believe that. I am still sort of stunned by the fact that my little man turned 2 months old yesterday, however isn't due for another 26 days. That is, all things considered, really very freaky.

However, on the topic of my little man, he is doing good. They have upped his high flow to 6 hours daily. WEEEE!!!! Hoping it means that we will start to hear the word "low flow" being tossed around soon. Seriously...it has been over 2 months now. I hate that when I go in to visit him at the NICU, babies who have been there for 2 weeks who were born at a younger gestation than him are chilling out on the low flow and looking to be transferred down to level 2 while they are still within their first month of life.

I know, I know. You can't compare babies. But still, it is bloody frustrating. I mean, I had the lovely shots in my hips which were supposed to mature his lungs...most of these ladies didn't. Riley didn't have to be resuscitated...most of these babies did. Riley is 63 days old...most of these babies are under 30. Why the hell can't he get rid of this CPAP?

Yesterday, he did amazing on the 6 hours of high flow. Rocked it out at 35% for the entire 6 hours...and stayed in the mid to high 90s the entire time. Then they flipped him back to CPAP...at 40%...because he kept desating at anything lower. Seriously? Seriously...what the hell is that?

Anywho, rant over now. I am still happy that he is doing so well, and that he is starting to make progress, and that he is doing good with the breastfeeding. I am just very disappointed with seeing every other baby around us move from intubation to biphasic CPAP to CPAP at room pressure while my little guy is going ass backwards and keeps going up in necessary oxygen on the bloody CPAP.

I guess the worse part is that there is nothing that can be done, and no reason that can be found for this. His lungs appear to be fine and very well developed. He just doesn't seem to have the ability to keep his saturation levels up. And I am getting really, REALLY sick of hearing "well, he will do it on his own at his own time". I know this. I realize that I won't have a twelve year old still sitting around in the NICU. But that doesn't mean that all the false hope of him moving to a level 2 and being home before his due date that I was filled with from the comments of how wonderful he was doing and how healthy and strong he was (all things being considered) doesn't affect me every waking hour. And the fact of the matter is that if I were to have had him today, he would be coming home with me tomorrow.

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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.)

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Ugh!

So this has been one weird ass week. It started Wednesday, when I had a bit of a bump in the road and now have to deal with some pretty crappy stuff. :( But it will work out in the end (despite the nagging voice in the back of my head which is telling me otherwise, I have to believe this). However, this slight bump was somewhat alleviated by the fact that that same evening, I got home to not only have the delivery of Hogfather sitting on my table, but the delivery of pasties from the recent Pasties Swap on Ravelry there too!!!

Everything seemed to be hunky dorey, until yesterday. I finally found a sitter for my daughter for the day of the concert we are going to (June 18...a Wednesday, so it was difficult), only to find out that that is the same day as my daughter's graduation. I know that it isn't something massive, and it is, to paraphrase Mr. Incredible, another way to celebrate mediocrity, but I can't not go. The kid's all decorate the room for the graduation...they make it a huge event...all the families will be there...I just can't not go, nor can I keep her from it, since it will be the major focal point for her entire class for about a week before, and a week after.

So fine, I sucked up the fact that the tickets we have had for the last 3 months are now useless to me...when suddenly my sinuses decided to attack from the inside. We had running around to do...nothing major, but stuff that needs to be done before the out-laws arrive, and suddenly out of nowhere, I am almost blind from the pain.

It calmed down a hell of a lot, but egad...this week is truly a rollercoaster. Wonder what the weekend will bring...lol

Will post new pictures of the loverly stuff I actually managed to get done sometime this weekend...when I think of it.

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Hogfather and other Ramblings

So, since I am a geeky kinda gal, I have a deep and passionate lourve of Terry Pratchett and Discworld. Therefore I was very upset (very upset) to find out that despite Hogfather having been released in Canada yesterday, the HMV by my work did not get any copies in. *sniff* *sniff*...cue sad violin music...

I have been working away on the kinderwhore sockies...and damn skippy if Nikol Lohr is not correct in the statement of zombie mode...haha. Will likely finish one of them off tonight while zoning out to National Treasure 2 (told ya...geeky kinda gal).

I have also made the startling discovery that my workplace is some sort of a conspiracy to drive me insane. First, they switched the milk cartons to those little single use cuppy things so you spend about 5 minutes just opening them to make your damn coffee, then they upgraded the lighting to a scary brightness (I hate actually being able to see everything as well as the fact that everyone has a yellow tinge), and proceeded to make us all move around for 3 month periods so they could renovate and provide every floor with scary bright lighting, and finally, along with the renovations, they "upgraded" our bathrooms. We have those motion sensor flush toilets...you know...the ones where if you breathe while you are on the toilet, it takes it as that is you moving and flushes, coating your bottom in a loverly film of freezing cold water. Fun, fun, fun.

Ok...rant off

Also, I post it once it is complete, but I am currently working on a pattern for tights for my daughter. I whipped up a pair last year, but really haven't a single clue what I did. I am using those ones as a jumping point for the new ones, though, so I will have to figure it out, and figured might as well write it down while I was at it.

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Absolutely Heinous

I learned about this earlier today, and I have to say that, even though I work in the legal field, I am thoroughly disgusted by the actions of Walmart. There comes a point in time where morals and doing what is right should come before what you are legally allowed (and not obligated) to do.

http://www.cnn.com/2008/US/03/25/walmart.insurance.battle/index.html

Much as I love Walmart, I cannot say that I will be able to shop there again. Hello Zellers!!! (And that has the bonus of being Canadian, eh? lol).

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i have learned that anger, no matter how fruitless it may be some days, is sometimes exactly what you need to feel. i have realized that i have a tremendous amount of anger towards certain individuals for certain actions which they took and which were taken on their behalf. nothing will change those actions, or the resulting actions in response, but that doesn't prevent the anger. that doesn't stop me from wanting to scream, and to hurt in retribution for the hurt i feel. but i would not do that. i know myself better than that. and sometimes it is enough to acknowledge the anger and cry, scream and fight with it and for it. sometimes.

Some days...

I despise when people refuse to see the other side of something. Or believe that a request may be made simply for selfish reasons and not because a person is not comfortable in acknowledging something, or pointing something out, or sharing something at that time. It does not mean that what that person feels or thinks or is doing is trying to keep others in the dark. It just simply means that that person is not yet at a point of wanting to share.

And it hurts to know that information which was mine to share is no longer mine to share. This is not me being a bitch about it. But it hurts. Nothing more, nothing less. And it hurts even more because I know that certain people will believe that it is for self-serving reasons.

And quite frankly, after all the time, and after dealing with hearing the same broken record tunes, I just don't give a rat's ass anymore.

The Great Big Grrr and I

Let me preface this entry by saying I don't vote. Yes, yes, I realize this is very uncivic of me, however I refuse to be put in a position of deciding which of the lesser evils I would prefer. I have yet to hear of a single politician during my time who has ever made good on their promises, while not selling out another sector, one which is important to someone. On the other side of that coin, however, I don't bitch about the government which others have elected into power. I don't complain about the bad jobs they are doing, or the things they are taking away without care for who needs or uses those services.

However, lately I have been plagued by a certain function of the government, one which does not contain elected officials, so I am within my rights to bitch and complain at will. There are things within our government which no one becomes aware of until they are, unfortunately, on the wrong side of them. It is frustrating, and serves to further my dedication to NEVER vote, when the government officials who are connected with these services refuse to acknowledge the words, complaints, questions of a lowly citizen. They have proven to me, at this moment in time, that even were I to have voted in the powers which placed them in their positions, it would matter little to none, since my words mean nothing to them.

Now, when I am frustrated/worries/upset/etc., I knit (or up to recently, sewed). I started the below about 3 days ago (Thursday, on my train commute - since then, after my daughter has gone to bed). This picture was taken last night, before I went to bed. And while it is great that I will have the sweater I am working on for my hubby done much sooner than originally anticipated, the frustration has not ebbed.

I am sure that, at this rate, I will have pictures of the completed sweater up here in, oh, 2 days...lol. (The below is from this evening.)

Wishing you never have to deal with the "people's" government...

On a much different, and definitely happier, note, I have realized that I have the world's greatest landlords. Yesterday, it was their youngest son's 13 birthday. Since my daughter and I (my hubby currently being away) were outside for most of the day, they happened to spot us. Immediately, they invited us along with them, for dinner and the party. Then my landlady absolutely insisted that we come. So we were treated to an absolutely wonderful barbeque dinner, followed by much laffing and games. And this morning, yet again, we were outside relaxing (Ammy was riding her bike around while I sat and...oh the shock...knitted) when they came outside. My daughter was immediately absorbed into their games and activities...and I very soon found myself with a much appreciated cup of java. :)

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