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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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 Tony...you 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.)

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I'd Update More, but I have better things to do right now

Wow...does that sound mean or what? It's not. But I do have better things. My time right now is somehow split between spending the days with my boy down at the hospital, spending my evenings with my girl at home, spending my nights with the big boy at home, spending the wee hours of the morning waking to subject myself to the horrible yellow monster known as my medela, and somehow fitting in a nap every so often.

I actually have been able to get some knitting done too. I am about 3/4s of the way done my lilian top (wee!!! can't wait for the weather to be nice enough that I can actually wear it, too). I am planning on making a bunting bag with car seat space (for the seatbelt to fit into) next. Can you guess who this is for???

I'm currently working on a cross stitch birth announcement for my boy, too. I did one for my darling daughter when she was born, and haven't really done one in a few years, but thankfully it is one of those easy things that once you know what you are doing, you are set.

I will post some pictures of both of these when I have the time to take a picture that is half decent (currently they are not turning out so well...thinking I might need to try to get a few more of those nap things mentioned before in order to function in a normal manner...just a thought).

So, on to one part of the "better things to do", Riley is doing great. He has really started to root now whenever we hold him (he has no discretion...goes after the other half's nipples just as often as he goes after mine). Whenever I do kangaroo care with him, he fights and fusses and sets off his saturation alarms until I acquiesce and let him go into a position of his choosing...often being using my boobie as a pillow, and sprawling sideways. But, hey, if he is comfy and settled and not setting off alarms, it is good by me.

Here we are after today's fit...it just takes all the energy out of him to move the few inches to the left or right:


His current weight is sitting at 1350 grams (11 grams to 3 lbs). They redid the ultrasound on his head this morning, too. And, due to the grade 2 bleed still being present at the last follow up, they are expecting to get the results back to us tomorrow morning. Our primary nurse is also going to see about starting him on the non-nurtitive nursing this weekend, as he is obviously ready given the rooting. Their only concern is the CPAP. Usually they like for a baby to be off of it. But, since he has done well with the low flow before (and given that his caffeine has been upped, as well as the RT upping his pressure while lowering his oxygen), she is hoping they may agree to putting him on the low flow for those. We shall see. And besides, if not, it is not like my poor nipples aren't receiving enough abuse as it is. (Good lord, I miss the days of having a child attached to them, as opposed to an unforgiving machine...my body seems to be on the 3 hour schedule, so the upside is that I don't leak at the sound of a crying child; the downside is that I do leak every time it hits over 3 hours since my last pumping.)

The big little one is doing wonderfully as well. I think we have decided her "it is all about me" day that we are planning on doing with her (since she has been so wonderful in understanding why we all go down to the hospital on the weekends, and why mommy isn't working, but still drops her off at school/daycare and so forth) is going to be spent at the science centre. Damn but the girl is smart. She is completely reading on her own now (although she still does like for us to read to her every once in a while)! She is also starting to understand how to tie her own shoes!

Well, that is about all that is new and exciting in our world. I'm for bed now (just popped on while I had the bottles/shields/etc. sterilizing...if you are expecting, I highly recommend getting one of those microwave sterilizers...they are a godsend).

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The Ups and Downs

As a parent of a preemie, especially one in a level 3 nursery, you prepare yourself for the worst, even if they are doing great. You are warned time and time again that pre-term infants are likely to slide back on the progress scale. That every big step forward can mean a big step back as well. And sadly that appeared to happen yesterday.

I called in to the hospital to see how he was doing yesterday morning, and was told that he had had a few apnea episodes through the evening, so they put him back on the biphasic CPAP (the one that provides him with a breath periodically). Ok, I can live with that. A little disappointing, but considering that he should still be spending another 8-10 weeks inside of me, I can deal with that. His lungs are, after all, still very immature and he is still learning to breath.

Well, when I get there last night, after spending the day caring for an over stimulated 5 year old (she got into the Easter candy while I was in the other room) and a sick husband, I find out that in addition to the set back with his breathing that occurred overnight, they are now thinking that they will have to re-intabate him (put the breathing tube back in). They also told me that he was very lethargic that morning, so they took some blood to test for infection - both viral and bacterial - as well as having performed a lumbar puncture. His tummy was all distended and hard for no reason, so they stopped feeding him and conducted x-rays on his chest and belly. They are thinking that he may be septic.

And cue tears.

No, this is not a pity post. It is just very disheartening when he has been doing so well. I know that we were prepared for all the bad things that can happen. We have been made aware of all the things that can go wrong and backward stepping we may have to do. But that doesn't make it hurt any less. That doesn't mean that seeing him looking more fragile than before, and knowing that he is now on 3 different antibiotics, possibly septic, had to go through an LP, has to go for the head scan now not only for the bleed but also because they need to make sure that there is no viral infection in the fluid in his brain, and is no longer being fed because they are not sure what has caused the distending of the belly isn't a horrible thing to stand there and see. Especially when he has been doing so very very good.

He is doing better today. He was good through the night and remained on the biphasic CPAP. His belly had softened as well. They are not sure if it was just him having a bad day yesterday or whether he was reacting to the antibiotics (meaning that there is an infection somewhere in that little body). Either way, they won't have the results from any of the blood work until tomorrow afternoon at the earliest. They started feeding him again this afternoon - half of what he had gotten up to (so 6 ml/2 hours).

Yesterday truly did feel like a slap in the face. Yes, I know that it is all about him. But it is very heartbreaking to know that there is nothing I can do for him anymore. At least a few weeks ago, sitting around and following doctor`s orders was good enough for him. Making sure I was eating right was good for him. Drinking lots of water was good for him. Now there is nothing I can do to protect him from these things that should not affect him...things that he should be inside of me still using my body to fight, create, etc. And for those who wonder why some of us feel guilt...this is why. Our bodies are supposed to protect these little angels. Our bodies are supposed to be the ones helping them to create antibodies, and learn to breath, and mature and develop to the point that they know and can without any sort of medical intervention. Somewhere along the line, my body decided it didn`t or couldn`t do so. Somewhere along the line, my baby boy realized that he was in just as much danger inside of me as out. And yes, there is the part of my brain that tells me I am an idiot for feeling this way. But guilt does not care about logic.

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Welcome to the Kilo Club

Yep, we are officially members of the kilo club. See:


For those who have been through the NICU, you know what this means. And why it would make us so very happy. For those who don't, essentially it means that our little guy is over a kilo, and they are expecting that he will remain that way (their weigh fluctuates during the first few weeks of life...all baby's weight does...but for those who are near or under the kilo mark, making it to one kilo is a huge thing).

Yesterday, I spent the entire day at the hospital with Riley. Tony and Am came by in the evening. We got to spend some great family time...with Ammy asking a thousand and one questions about how he was doing and when she could touch and when he could come home. Of course, after about 30 minutes, this quickly became "when are we going to my cousins?" Meh...can't expect too much, I guess.

Riley was supposed to have his second ultrasound, the follow up regarding the bleeds in his brain, yesterday, however, it was written down as being scheduled for today...which is a holiday. Not sure when it will be done now, but today we were told it wouldn't be until Tuesday. :( I am trying not to worry about that one, but it is hard.

The umbilical line has come out today, too. This will be much more comfortable for him, I imagine, and at the very least, his belly button can heal and he can be placed on his stomach more (which is better for their breathing and digestion and a whole slew of other things).

They have decided that Riley will be put on low flow when being held, and will continue for as long as he is tolerating it well. Today, he was on the low flow for just over 2 hours! Unfortunately, he had two episodes with the heart rate (not the saturation levels - which is a great thing in and of itself), so they decided not to stress him out and put him back on CPAP. But, for being only 10 days old, over 2 hours on the low flow is awesome.

And, since it is only fair, here is proud papa with his little man:


Well, that is all for now. Hopefully things will continue to progress as well as they have been. His feeding is now up to 10 ml/2 hours...only 6 more til he is at the level they want...and with him being upped every 8 hours, and with how well he is tolerating it, I can't see it being a problem to get him up there.

In art related news, I have picked up the sweater I started prior to his birth. I haven't had the energy or mental fortitude to take it up since then. But, today, I finally started doing it again. WEE!!! I was somewhat surprised that my fingers haven't forgotten what to do.

I also started working on a birth record cross stitch for Riley. We bought it a while back, but I hadn't started it, as he wasn't expected until June. So, I have decided to start that...(I did one for Ammy too when she was born). Should be something to keep me occupied when waiting for family visits (on the weekends, when the other half is done work, we all head down for about an hour or 2...but since there are only so many times that I can rearrange his room, and everything else is fairly clean, there isn't much to do here except go crazy).

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My little angel

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Originally uploaded by knittybitch

Today they let me hold my little boy. I was so over joyed at that. He is doing great, too. They started feeding him 2 days ago (1 ml/6 hours). He had gained 30 grams at his weighing yesterday evening (after losing an initial 240 grams), so this was great to hear. And to boot, they have upped his feeding to 2 ml every 2 hours. They are thinking that it might be upped to 3 ml every 2 hours if he continues to respond so well to the feeding.

And I love that the nurses and doctors have decided to let us become much more involved. We are able to change him and clean him, provide him with a soother if he is upset, and, of course, hold him for limited periods of time. We are also now able to help with his feeding.

The only thing that we have hit that *might* be a problem is that he does have 2 small bleeds in his brain. Bleeds are very common, and he has one grade one and one grade two. They are not overly concerned about the grade one, however the grade two may cause an issue. Often times, it is reabsorbed into the brain, however they will be completing another scan on Friday to see if it is getting better, or if they will have to look into putting a shunt into the ventrical.

Otherwise, he is doing great. Did great on the low flow today, and is finally gaining weight.

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I swear it is not an April Fool's joke

yes, both my hubby and I have twisted senses of humor, but no, we are not that mean.

This is what we had to say many times over the course of yesterday.

Riley Russell Naugle made his debut yesterday morning at 7:50 a.m. weighing in at 2 lbs 9 oz. A little on the early side (27 weeks 3 days), but everything appears to be going good at this moment.

Will update more detailedly when I have a few.

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