I Am Not Strong

... or at least stronger than anyone else would be in my situation.

I had another one of those moments last night where I started thinking about worst case scenarios and brought myself to tears, and it was completely unfounded. There is no reason to think that I should have to worry about what I cried about, but it was just one of those "What If..." moments. Dominic is doing well. He is recovering. He is doing fine. No need to think about what if he wasn't.

And I know that people are trying to be helpful when they tell me that I am "so strong". I'm not. I feel like a fraud when anyone says that. Any loving mother would be doing exactly what I am doing, but in her own way. I still have my breakdowns, but I don't talk about those as often. They don't help anyone. They aren't worth as much as the positive outlook of his recovery. Mostly because they are like the instance above, where they really aren't about what's happening right now anyway. They always seem to be "What if.." situations. Not "How It Is..." scenarios. Even when we found out about Dominic's stroke, I didn't cry about how he was doing right then. No one knew this had happened because he was doing so well. No. I cried about his future. What may or may not happen with his learning abilities, his motor skills, and his general overall quality of life. But right now he is a happy boy who doesn't know that he is different from anyone else. He doesn't realize that his situation is tougher than any other baby's. He's just chugging along, doing great, while his crazy mother is worrying about the future.

I think I can learn a thing or two from Dominic.

An Update (but not really)

I feel that I really need to keep everyone in the loop because so many people are interested in knowing about Dominic's recovery and prognosis, but in reality not really too much is going on right now.

Dominic is still in RUH. I have been going to see him every morning and every evening and I take off the afternoons to spend with Rosalie (which partially consists of napping, which apparently only I can get her to do regularly).

Dominic is on the mend. He's getting better every day. Last week we started getting him to orally feed some of his food rather than having it all put through his feeding tube. This has been a bit of a struggle for him, because prior to this the only time he as  even attempted feeding from a bottle was when he was a day old, and it didn't go super well. The first few days of this new attempt he was only able to get about 5mls at a time, lately he has been getting about 15mls orally. So he's slowly improving, but since his full feeds are 65mls he's not to the point where he could go home. This is one of the hurdles we need to get over before they will consider it.

We still don't know about when he will be going back to Edmonton for sure, or which procedure will be undergone... He's up to being about 9.5 lbs...

... really, I don't know what else to tell ya! He'll keep improving, and we'll know soon enough about where this road is taking us.

We're Back!

It has been an absolute whirlwind since we got back..

So we did end up leaving Edmonton on Tuesday night... well, technically Wednesday morning, but who's really keeping track? (ME!). Roland and I had a really tough time trying to figure out how we were going to approach this trip home, so many things had changed over a short period of time that Roland really did not feel comfortable leaving before Dominic and I did because he was worried things would change again and we wouldn't end up leaving. But leaving at 12:30am would probably mean that Rosalie would already be awake when he walked in the door, not to mention that he would be absolutely exhausted. But he couldn't handle leaving too much before us, or staying and leaving in the morning. So about 11:00pm, we decided that if things had changed we would have been notified by this point and Roland started back to Saskatoon in the truck. I went back to Dominic's room at the hospital to wait until the transport arrived figuring they would be late with how everything was going that day, only to have them arrive at 11:30! That was a nice surprise! After loading him up, the nurses getting all caught up on Dominic's meds and what have you, we were in the Ambulance at about 12:15am, and on our way to the hanger to hop on a plane.

We landed in Saskatoon just after 2am, got to the hospital around 2:30 and I got Dominic all settled and then headed home about 3:30am. I only had a day bag of emergency and Dominic's things on the flight with me, so when I got home there wasn't much for me to do. But Roland had a lot of my sleeping things (pillows, pjs, toothpaste, etc), so I ended up lying down and just waiting for him to get home, which was about 5:15am. Then... sleep.... blissful sleep...

It is REALLY great to be home, but going from a fabulous hospital like the Stollery to RUH is like going from Beverly Hills to the slums. Seriously, the Children's Hospital can't be built quick enough.

So where do we go from here?

Dominic is still on his intravenous antibiotics until October 11th, so he will be in the hospital until then. (In theory, but I don't want to jinx him coming home early, so I may talk about that if it ever gets close to happening).

We will need to go back to Edmonton after the antibiotics to deal with his pulmonary arteries. Initially when that was addressed as a problem we were also finding out about his stroke, which was far more devastating at the time. My understanding at that time was that one of his pulmonary arteries tapered to the point of almost complete occlusion. In fact, what happened was when he was healing from his conduit being put in his heart, the very top of it connects to the pulmonary arteries, and it as at that point that it tapers to the point of occlusion. So it does not just effect the flow to one of his lungs, it effects it to both, plus the added pressure of that narrowing is making the right side of his heart work far harder than it should. SO something needs to be done about it.

Option 1(a), which is the usual course of action, is to do a cardio cath, which is where they put a tool in through the femoral artery (in his leg) up to his heart and balloon out the portion of his pulmonary artery that is effected and put a stint in. However, Dominic has a clot in this artery that passes by his liver. It was diagnosed before he even went to Edmonton and he was put on blood thinners for it, but it hasn't gotten smaller. This wasn't a big concern, more of an inconvenience, it wasn't getting bigger, and it isn't effecting blood flow, so it wasn't a problem. But now that this procedure is necessary, the fact that it narrows that artery poses a problem.

Option 1(b), is still to do that cardio cath, but to go in through the carotid artery (in his neck). That is a far riskier procedure because the tool would have to go down through the carotid and then back up through to get to the pulmonary. It's just not as natural and easy as the femoral would be. Plus Dominic is still so little that it makes things more complicated.

Option 2 is another open heart surgery. I don't think I need to explain why I don't want that one.  But if the other options are deemed to risky then it needs to be done.

No matter what they decide to do, we will be heading back to Edmonton in October after the antibiotics are done. If they choose one of the cardio cath options then it would be a day surgery. Roland and I would probably be transporting him rather than going by air ambulance (fine by me!), we would go the day before surgery was scheduled, he would have his surgery, if he does AMAZING he could be discharged that day, but more than likely he would be observed overnight in their Pediatric Cardiology Intensive Care Unit (PCICU) (which is also fine by me because my favourite doctor and nurses work there). And then, assuming all went perfectly and there were no complications we would head home the next day. Not too painful. Whereas surgery would probably mean 3 weeks of recovery again. I don't know if I can handle that. Some of my sanity might be left in Edmonton if that happens.

But no use stressing about that yet. I'll save that for October ;)

Happy to be home now though! And here is a celebratory photo of Dominic. I am in SUCH a good mood to be home that I am beginning to feel more comfortable posting pictures. And this one is my favourite to date :)

Bright eyed and bushy tailed!

Home Bound?

On Sunday we got the unofficial all clear that Dominic was good to head back to Saskatoon on Monday. Yippee!! HOME! I couldn't wait!! We packed most of our stuff, went to get a cooler to pack my (ridiculous amounts of) breast milk, and kinda made a plan for how things would go down if Roland wasn't at the hospital yet and we were notified of the transport.

I could barely sleep Sunday night. I was so excited. I was already visualizing my home town reunion with Rosalie. I was basically giddy when Dominic fussed because it gave me something to do other than stare at the ceiling with a dumb grin on my face and think about going home.

I was up at the ass crack of dawn, enthusiastic about Rounds and what they would tell me. Surely there would be a bed for him in S'toon! So I waited, and WaItEd and WAITED, and they didn't come all morning. The ONE DAY I was eager to hear what they had to say at rounds, they started on the other side of the unit, which might as well be the other side of the hospital... or city... or country.

Finally about 1:00 they got to us, telling us that he's been cleared to head back to Saskatoon, but right now there are no beds available for him. UUUUUUGGGGGGHHHH! I was SO looking forward to going HOME. I thought I might cry if they told me we weren't going back, but I was just happy he was now officially cleared to go. UAH is in contact with RUH and things are on the go, but I am still in a rush to get him out of here, it seems like they always find something at the very last minute and I don't want to stay second longer than I have to. I do want him to be very stable cardiac wise, but at this point I just want to go home so badly. If he ends up having to be transferred back next week because of something they missed before sending him home, so be it. I just want that week at home.

Tuesday update: we are tentatively, unofficially slotted to depart at 2:30 from the hospital... Fingers crossed! (Again)

Tuesday after rounds update: There is still no available beds at RUH, but they are going to get back to UAH at noon to clarify. I JUST WANT TO GO HOME!!!

Tuesday at 12:30pm: We are set for transport at 2:00pm. The rush is on! I hope it's for real this time!

Tuesday at 1:30pm: there are maintenance issues with the plane. Rescheduled to depart at 10:00pm. This is getting absolutely rediculous. The fates really don't want us to go home.

Tuesday at 6:00pm: now we are being told sometime between 11:00pm and midnight. This is putting Roland to the point where he might be getting home at 5:00pm.

Tuesday at 9:00pm: leaving at 12:30am supposedly

P.S. This is kinda a weird post because I have been disappointed so many times with the hope of going home, only to have something get in the way. So I am writing this stating the day of the week that I am writing on rather than writing "today" so that I won't have to change much. Also I don't want to jinx anything. But know my plan is to just post it as we are getting on the plane to come home, so if it seems unfinished, that's why. So know that when you can see this post we are either on our way home or home already. (Yahoo!!)

P.P.S. I hate blogging on my phone.

Intrusive Memories

Intrusive Memory is the true story of how I overcame a severely disabling case of PTSD, brought about by sadistic child abuse at the hands of my mother, to achieve my dream of becoming a physician. This book is not for the fainthearted. This is the story of how I fought against the odds and against my inner demons to claw my way through college and into medical school, where I graduated at the top of my class.


This book was a solid "OK" in my books. Noto REALLY needs to work on his writing style. In my opinion it was far too casual for a book, it was really more of a blog type style. He tries to tell his story chronologically, but drifts off into tangent story lines regularly with a "Oh, I forgot to mention..." and then comes back to the main story with an "Ok, but back to where we were..." and it is really jarring at times. We all know that even if he did "forget to mention" something, he could just go back and edit it in someplace before this. And that is also something an editor should have told him, so either this book is self published or this guy had a really shitty editor. He also has the frustrating habit of using acronyms before he explains them. Some are medical terms, some were military, none of them were ones that I knew from prior to reading this book (as I am not a doctor or a soldier). He will EVENTUALLY explain them, but not before using them at least once several pages before (another something his editor should have fixed). 

Noto's story is very interesting though! His experience with abuse and PTSD (Post-Traumatic Stress Disorder, see! That is how you do it Mr or Mrs Editor) is very informative, and his experience with overcoming them as well as bettering himself afterwards is very inspiring, but the problem is I really don't like this guy. One would think that writing an autobiography would give you the advantage of making people like you because you have the ability to tell things how you see them, and thus get people to understand you, but this guy just comes off as an arrogant, self entitled ass. One example of this (and granted, I realize I may be bias on this topic because of personal experience) is how he approaches his relationship with his Dad. Early in the book he states that his mother did everything in her power to turn her kids against their father once they got a divorce. She would bad mouth him and say things that were untrue and even do things (like attempt to kill Leo's cat) and then claim that it must have been their father that did it. This created a rift in the father/son relationship early to the point where Leo would kick and scream not to go to his dad's house, and sell Xmas and Birthday gifts from him, and when he got older he showed a blatant distrust and hostility for his Dad. BUT when Leo goes up and seeks out his dad for help escaping his mother's rage, Leo blames him for being  distant and negligent. I mean, Seriously?! This guy treats his Dad like crap for years and then considers him negligent when his dad keeps his distance from a son that has been openly hostile to him for years? Not only do I not blame the dad, but I commend him for attempting to continue a relationship with his oldest son and is so willing to help him when the son was basically abusive to him for years. It was an act of self preservation. And who could blame the guy? 

If you don't agree with me about the Dad thing, just read the book. It paints a way better picture in there. Also pick this one up if you have a particular interest in PTSD, it is very informative and descriptive of what it feels like to have PTSD and how Noto was able to deal with it unmedicated and become a (somewhat) functional member of society. Otherwise, I might tell you to give it a pass, it really wasn't very noteworthy otherwise.

P.S. I think a great tagline for this book would be "Life's a bitch, and so is this guy's mom" ;)

One Month Birthday (and a teaser picture)

One month. I can't believe he has only been with us for a month, yet it seems like an eternity ago that I was in labour with him. It also doesn't feel like we've been in Edmonton for almost a month already, at the same times it feels like FOREVER. I can't wait to come home, with my baby boy, even if it means he'll still be at RUH for a while. Baby steps, ya know...

Peek-a-boo!

This is the best y'all are gunna get for now.

He fell asleep about a minute after this picture was taken. He is all snuggled into one of his blankets, and the orange face cloth is holding his soother in place (he loves it, but the cleft makes it so that he can't hold it in his mouth on his own because he can't get the suction)

So there ya have it. He actually exists! Hehe. I'm still working on being OK with other pictures, consider this a compromise, but this may tide over a few of you. ;)


P.S. The sore on the bridge of his nose is a pressure spot from the breathing mask. It's slowly going away, but it looked way worse a week ago when it was purple-y like a bruise.

So Very Grateful

Through this whole ordeal with Dominic's surgery and stay in the University of Alberta Stollery Children's Hospital we have had an amazing outpouring of support from friends, family, coworkers, and mere acquaintances. Some offering accommodations or a home cooked meal, others offering to help financially, and others simply offering help if we need anything at all. My mom has particularly gone above and beyond with taking care of the kids (including bringing them out to see us) and being someone to talk to and shoulder to cry on when it's needed. Some others have sent well wishes via phone, email, Facebook, and a neat little program called "Email Well Wish" they have here at the Stollery. We have been given gifts and goodies for Dominic and the rest of the family. I have gotten stories from people I have known for years telling me that they had cleft lips and palates and I never would have known to see them now. I have heard/read about people's family members having strokes in utero and how well they are functioning now. I have been told about physical traits being "fixed" and how saying goodbye to those traits can be so tough. I threw out an interest in hand-me-down clothes on Facebook and got an overwhelming response so I am sure Dominic will have the best baby boy closet in Saskatoon. All of this means so much to Roland and me and our family.

We have been very well supported throughout our entire stay here in Edmonton by not only people we know, but through institutions set up to help support people like us that have a child with a lengthy hospital stay away from home. Our only concern for the time being is Dominic's recovery, and we are thankful that we can focus on that rather than other issues that must be dealt with but seem more trivial at times like this. We really are stable right now, but thank you for your offers of help. I may be cashing them in when Dominic gets to come home with us. ;)

For any of those who feel that they would like to do something for Dominic or for us, we have been really supported by (or may need support from) three institutions currently (or in the future). First, we were approved for funding through Kinsmen Telemiracle for our accommodations, travel, parking, and meals which has made us far less stressed financially. They have been absolutely amazing. They listen to and understand my concerns and make certain exceptions for us due to our situation. Also the Stollery Children's Hospital here in Edmonton is fantastic. Not only because of their stellar medical staff, but also because of the welcoming environment they have created here. They have done an amazing job making this hospital not a scary place. Finally, hopefully with the building of the Children's Hospital of Saskatchewan, we won't need to travel so far and be away from home for so long for Dominic's specialized care in the future. All three of these charities have helped us out exponentially and are very deserving of any contributions you may make. If you would like to donate under Dominic's name please do, we would really appreciate the support.

To donate to Kinsmen Telemiracle: http://www.telemiracle.com/html/donateToday/index.cfm

To donate to the Stollery Children's Hospital Foundation: https://secure.stollerykids.com

To donate to the Children's Hospital of Saskatchewan Foundation: https://www.childrenshospitalsask.ca/sslpage.aspx?pid=298 

Thank you all again for your support!

Protecting His Pictures

I have heard and read many comments since Dominic was born that people "Can't wait to see pictures of him!", and I have smiled and nodded like they would be coming, but frankly I really don't want to post pictures of him.

I have oodles! Don't get me wrong. Days do not go by without pictures being taken. But I am very much not ready to share them with the world. Dominic's bilateral cleft lip and palate are big. He is not a cute baby, and whenever a nurse says so, I just think that it proves that they say that to everyone, regardless of what the baby looks like. He IS beautiful to me, but that's a mother's love. If the world would be as accepting of him and his cleft lip and palate as I am, then I wouldn't have surgery done to fix it. But this world is very superficial... and it will help him when he starts eating solids. But I really do love him the way he is. Part of me will miss his little nub when they fix it.

I still feel bad about not posting pictures. I know that so many people will not care what he looks like, and I do believe that many people do genuinely want to see him, and as my nurse friend said "You should post pictures, because it's HIM!", but she is one of those people that loves him for him, and won't just look at him and pity him, or be glad that it didn't happen to their child. I did post the one of him minutes after being born, but it's far away enough that you can't really see how bad it is, and I still was hesitant about posting it. I also feel bad because I don't want him to think in the future that I was embarrassed of him, because I am really not. I am SO proud of him. But there will be gawkers, and I don't even want them to gawk over the internet because they want to see just how bad it looks.

I will post pictures eventually. Just not yet. Maybe after this business with a possible second surgery is done. Or maybe when we get home. Or maybe when his surgery for his lip is done... we'll see.

The Painted Girls

Paris. 1878. Following their father’s sudden death, the van Goethem sisters find their lives upended. Without his wages, and with the small amount their laundress mother earns disappearing into the absinthe bottle, eviction from their lodgings seems imminent. With few options for work, Marie is dispatched to the Paris Opéra, where for a scant seventy francs a month, she will be trained to enter the famous ballet. Her older sister, Antoinette, finds work — and the love of a dangerous young man — as an extra in a stage adaptation of Émile Zola’s naturalist masterpiece L’Assommoir.

Marie throws herself into dance and is soon modelling in the studio of Edgar Degas, where her image will forever be immortalized as Little Dancer Aged Fourteen. Antoinette, meanwhile, descends lower and lower in society, and must make the choice between a life of honest labor and the more profitable avenues open to a young woman of the Parisian demimonde—that is, unless her love affair derails her completely.

Set at a moment of profound artistic, cultural and societal change, The Painted Girls is a tale of two remarkable sisters rendered uniquely vulnerable to the darker impulses of “civilized society.”

First of all, I would like to start off by saying that I am beginning to realize I tend to enjoy books better when they are told from the perspective of more than one character. In the case of The Painted Girls, the story is told by two girls, sisters, that are the oldest and middle children of a three daughter family, and are so very different in many ways. I like that I can get two perspectives on the same story and then choose for myself which one I find more accurate, or which girl has the better understanding of the situation or what have you. I tended to side with Marie more often than Antioinette, perhaps it's because all of us middle children need to stick together, or somehow I felt more akin to her in some way, but in any case I was offered an option, and I like that. I think it also may influence one reads the story and what you would hope for in an outcome, so perhaps someone that sided with Antionette a little more often may have preferred a different ending.

I am very unfamilliar with French history, so I cannot vouch for the historical accuracy of this book (Emma! You should read this one and let me know if you know!) I tried to look up paintings by Edgar Degas that were described throughout the book but many I were unable to find. It is really easy to find his ballerina paintings, but anything outside this theme seems to be difficult for Google. I also made an effort to look up certain characters that I figured may have been real people, but to no avail. So I made an effort to verify, but no luck. If anyone else has read/decides to read this book and can find out whether or not it is historically accurate, I would be interested in knowing!

Assuming it is accurate to the times, I found that the commentary on living below the poverty line in 19^th century France was really interesting. I don't even know if that is something you can verify historically, I mean, most history books are written by the rich that sometimes forgot the poor existed, but I digress... The different levels of commentary are interesting too, especially surrounding the play within the novel. This play simultaneously exploits and employs the poor people in Paris and it seems that the only one that catches on is Marie. The more I think about it, the more genius it is.

Being that this is a book about a bunch of girls, I couldn't imagine lots of men flocking to read this one, but it's not super romance-y or anything that I would say it's a book just for women. The Art and Ballet history are interesting, the girls are genuine, the story is compelling. I would recommend it if it sounds like something that is up your alley.