Dominic update/Looking ahead to 2015

Dominic has done well in 2014. Far better than we had actually expected with this 22q deletion and his stroke. He appears to be hitting all the milestones on schedule, except for his ability to roll over and keeping his head steady on his own, and I believe that is due more to the fact that he has been on sternonomy precautions (a requirement to be VERY careful of his sternum or breastbone, to let it heal after being cut open for surgery... twice...), which means that he wasn't able to do tummy time, which is a very important practice procedure for both of these tasks. He is making eye contact and smiling and laughing. He plays with the dangling toys on his playmat. He sucks on his hands and fingers. He is for the most part just a regular 4 month old. He still has his feeding tube, but takes about half of his feeds orally before we have to put the rest through the tube. I'm hoping his lip surgery will help him get to taking his full feeds orally. We have still to see any real hindrances from his stroke, which is a big relief. They may very well become more evident in the future, but as I see it, the longer it takes for those struggles to show up, the less severe they are. But maybe I'm wrong... we'll have to see.

(Please kindly ignore my disaster of a house in the background, I swear I clean... ya know... sometimes)

2015 looks like it is going to be a very busy year, especially if January is any indication. 

January 2nd, Dominic has a Cardiology appointment just to check on how his heart is doing. These appointments are always interesting. Dom gets hooked up to an echocardiograph and they look into his heart, specifically where he had surgery and any places there have been concerns in the past. Coincidentally, he is also off sternonomy precautions this day. Scattered through the rest of the month he has a plethora of appointments including his Kinsmen Children's Centre one (for Physio and Occupational therapy), he's going to see an Optometrist (for his lazy eye), kids clot team (about that pesky clot that won't seem to go away) , neurology (about his stroke), RSV (for an immunization... can't remember what it stands for, all I know is that not all kids get it but because Dominic has a heart condition and a possible reduced immune system he was approved to get it). The one I am looking forward to the most is his BIG Cleft Lip and Palate meeting on Jan 21. It's expected to take 3-5 hrs and we get to meet EVERYONE that is involved in his surgeries/recovery process and I hope to find out when his lip will get done. His Pediatrician is predicting late feb/early march, but we'll see.

I believe the rest of the year is pretty based on everything that happens in January. Depending on how things go with all of these doctors they will determine how often they want to see Dominic. The only other big thing that should be happening in 2015 is his cleft palate surgery sometime between June and October. Turns out that this may be happening in Edmonton instead of Saskatoon now, but that is not a for sure. I'll keep y'all posted when/if that becomes a little more certain. We'll have to wait and see. 

Normally, I would be planning on heading back to work in August, but the Parents of Critically ill Children benefit will likely mean I will get to be home a bit longer. I may return from my mat leave on time with Kilburn for weekends and evenings, but extend it for another year at the Correctional. I don't plan on heading back, but no need to slam that door shut unless I have to. I am also planning to attempt to get some kind of teaching position, we'll see how that goes. I've been out of the game for a bit. But I really need to get out of Corrections, especially because it doesn't look like I will be getting a fulltime teaching position at Kilburn anytime soon. 

As for New Years resolutions? I generally don't make them, but this year I have a bit of motivation. My first is to be better prepared for Xmas next year. This year was a gong show. I didn't know what to get anyone, I didn't know what I wanted myself. I hosted Xmas Eve by doing almost none of my own cooking or baking... I just want to feel settled and happy for Xmas Eve and Day next year, like they have been in the past. The second is to lose the baby fat. I am pretty unhappy with how chubby I feel these days and I feel I need to do something about it. I have never been one much for working out or running or anything, but I am not getting any younger and if I don't get into a healthier activity lifestyle right now I never will and it will most likely begin to effect my health way worse than it has in the past. I have a work out routine plan that I found online that I feel will work best into my current lifestyle and I hope that it works, but really any activity I get is good for me and it's better than the amount I am getting right now (which is zero).

Happy New Year to everyone and I wish you all the best in 2015!!!

Letter to Baby

A friend of mine wrote a blog post from a prompt she got from a website, and I thought the idea was pretty fun, so I decided to do it myself!

Prompt: Write a letter to your unborn child. It’s okay if you don’t have children, don’t want children, or are done having children – that might make it more interesting.

Dear [A & R] Baby Tomyn #3,  

If you are reading this letter, and become a new addition to our family, and you are loved, but you were definitely not planned. Dad is getting snipped next month so either you were the result of a broken condom or our inability to follow directions directly after the vasectomy. We will have to research names that mean "surprise!". This must mean you are a very Carpe Diem type personality, and any missed opportunity is not an option! You were determined to get your chance to be in our family and you took one of the last opportunities you could get! Given the scenario with the vasectomy, this also means you will be very close in age to your youngest brother. About 13-14 months apart. I will be surprised and worried about having to babes so close together, especially considering your youngest brother needs such special care, but I also think I will be excited. Although I won't be able to show that excitement to Dad until he accepts the idea of you, but know that your mom is happy. Your dad, however, is going to shit a brick. Half way to as crazy as Brayden's mom is still a hellava lot of crazy! At least we get a few points of crazy off for having jobs and being married and stable. Dad is also extremely concerned about supporting the babies we already have and adding you to the mix is bound to give him a few more grey hairs, but don't worry! Mom's "grey hairs" are strands of glitter added to her head to celebrate you! 

You may be unexpected, but you will not be any less loved than your siblings. You will be a positive addition to this family. Never think for a second that we would regret having you. Dad will need time to adjust, but once he does he will be so happy to have you and wonder how life was possible without you.

A little bit of a heads up before arriving into this family. Your oldest brother has a different mom from you, your sister and youngest brother. This is the thing that causes us the most strife in this family, but it also bonds us together tighter. He is a great older brother who cares a lot about his younger siblings. You will not pine for attention while he is around. Your sister is a little spitfire.  For 2 and a half years old she is quite opinionated and independent. She is eager to learn and eager to get into mischief. She loves being an older sister and tells us everyday how cute your youngest brother is. So you can look foreward to her doting when you arrive. The current baby of the family, the one you will usurp, is still very little himself, but he is definitely a fighter. He has been through a lot in his 4 months outside mom's belly, but he still smiles, and giggles, and is a little happy man considering. He may end up taking a lot more of mom and dad's attention than his fair share, but know that it is because he has a more complicated situation than you, not because we love you any less than him. 

If you need to take only one single idea from this letter, know that we may be tight on finances, but there is an abundance of love to go around.

Love Mom.

4th Anniversary

So this post is already almost 3 weeks late, sorry, things have been busy.

This was a tough year in the traditional/modern anniversary gift giving sense. Sometimes I enjoy the challenge, but this year I was in no mood.

The traditional gift for year 4 is fruit/flowers... neither of which screams "Roland" to me. So I went with the Modern gift, which is appliances. Because I, frankly, didn't have time to shop or look around for an appliance that he would want, I through out the idea to him for us to get a joint gift because it was something that I would like to use and something that would make things he likes to eat so...

TA-DA! An actifry. I've wanted one since last Xmas, but I didn't get it. Fabulous machine. We are both very happy with this gift. Yay for year 4!

Next year is Wood or Silverware... gotta start thinking! But I'm leaning toward wood already. ;)

Horror Stories

Note: This post has been written for mostly thereputic and reflective reasons. If at any point this post makes you feel uncomfortable PLEASE feel free to stop reading, because it really only gets worse, but the beginning is tame so at least consider seeing where this post takes you.

I have always been one that does not find Horror movies scary. More like comedies. I often jump with a burst of scary music, but then I laugh at myself. The "horrors" of the 90s, like Scream and I Know What You Did Last Summer, do not phase me in the least. Same with the classics, like Friday the 13th, Nightmare on Elm Street, and Poltergeist. Not scary.

On the other hand there are several movies based on true stories that give me nightmares. I may have talked about Saving Private Ryan before. War scares me. Loss of family scares me. TRUE things scare me. Corn syrup does not scare me.

What really scares me are the true stories that happen in society, and often no one could have done anything to prevent them. I don't think for a minute that WWII shouldn't have happened. Sometimes war needs to happen. That doesn't mean I have to like it, or that it doesn't scare me to tears. Sometimes these horror stories also come out of nowhere. Not "invited in" like a movie you choose to watch, but stumbled upon by accident.

The problem with fact checking sometimes is that you really don't know the can of worms you may be opening if you are completely ignorant to the topic. I was reading something the other day, I honestly can't remember what, and it referenced the death of James Bulger. Having absolutely no reference to who this was, I made the mistake (?) of poking his name into Wikipedia. The quick, censored, hopefully non-nightmare causing version is that in 1993 James was a boy one month shy of his 3rd birthday, that was tortured and murdered by two 10-year old boys... Ten. Years. Old... W. T. F.

It's one of those times that I should have stopped reading the article after the summary, but I never learn. I try to understand something that is completely unfathomable to a normal human being. I kept reading and reading hoping to find some reason that this happened. But I can't. Because there isn't one.

Not only is it horrible about the ages of the offending boys, but I also could not get past the age of the victim. James was only a month shy of his 3rd birthday. Barely older than Rosalie. How can someone do something like this to someone so innocent? Someone so sweet? Rosalie cries because I won't let her have candy before lunch and it breaks my heart a little, I can't stand seeing her cry. So how can two other children cause such harm to a young boy without feeling bad enough to stop? For the record, there was no way mom was at fault. The boys lured James out and away from his mother. But I have a feeling that mom still lives with guilt at not having been looking at the right moment. I've been there. Not exactly there, but I can understand. Kids move quick. In the time that it takes to poke your PIN into the pinpad at the grocery store your kid could be gone... one of those many unsettling things about this story.

I also feel highly conflicted about this story's outcome. The boys found guilty of murder and sentenced to a minimun of 8 years in prison without parole. Then it was changed to 10 years, then 15. Public outcry was partially the reason for the extended sentences, but it was considered by some to be a harsh sentence for boys so young. Did they understand the trial process? Did they REALLY understand what they were doing that day? The boys ended up being released in 2001, just over the original 8 year sentence and I am not sure how I feel about that. The Corrections Worker in me says "There is no way someone can do something that awful to someone and not have something wrong with them. They are a danger to everyone and should have gotten a life sentence". The teacher part of me says "These are children. And children can learn the actions they have done, learn what they have done is wrong, and they can also learn how to function in society. The bigger question is what we can do to help these kids. I mean, can you really be evil at 10 years old?"

This is one of those stories that won't leave me alone. James creeps into my thoughts all the time. That poor little man. His poor mother. I couldn't imagine being her. 

Perhaps the reason I think about it so much is it is important to remind myself that I don't really have it that tough with Dominic. I am so So SO fortunate to have Dominic in my life. 

Rest in peace little James. I know that your mother misses you so very much.

Scared to/of Death

Having a child with a congenital heart defect is placing me in a new state of fear. I have been scared for Dominic's life ever since I learned about his complications during that third ultrasound... And even before really. These little lives that we women have the honour of carrying are so fragile.

I have had the opportunity to connect with a few parents while Dominic was in the hospital here in Saskatoon as well as in Edmonton who have children with other heart defects. One of whom I witnessed them be informed that there was nothing more the doctors could do for their son, and they had to make that tough decision of when to let him go.

Two other of these brilliant mothers (and one fabulous dad) that are from Saskatchewan have babies that have far more severe heart problems than Dominic. These other two itty bitties (although not so itty bitty anymore being over 3 months old!) were born with severely under developed left sides of their hearts, known as Hypoplastic Left Heart Syndrome (HLHS). One baby was diagnosed in utero, the other was not (it blows my mind that Dominic's was diagnosed so easily when he had only one valve rather than two, yet this other baby was MISSING HALF OF HIS HEART and the ultrasound tech and radiologist failed to notice). These two little boys' hearts will never function as well as a normal heart would. There has only been a surgical option for repairing this heart defect since the 80s, prior to that babies didn't survive long. Each stage of the 3-procedure surgery is rittled with complications, the surgeries are so complicated and the babies so fragile that it is not uncommon for babies to die during or between procedures. Plus there is no definite life expectancy post the completion of the surgeries because it's so new that the oldest survivors are only in their 30s...

The point of this whole story about other peoples babies is that although Dominic has several problems to deal with, these babies have one big huge one, and that is scarier than I can imagine. I have learned so much from these women and dad, and that's a good thing, but it has given me more to think and worry about.

The one mom and dad told me that their son was discharged from hospital and home for a day before they realized that anything was wrong and the indication came to then in the form of a low body temperature. Had they not noticed, or decided it would resolve itself, their son may not have survived.

The other night I thought that Dominic's hands were a bit on the cold side, so I took his temperature every time I was up to feed him. It never did dip below 36, but I still didn't get much sleep that night. Dominic sleeps in a bassinet in our room but I still worry about waking up to find out that he never will. I am still very concerned about moving him into his own room. I have an angel care monitor... but... still...

I am now hypersensitive to his every move, or more importantly his lack of movement. I am not above grabbing a foot to take a pulse at any moment, although normally I don't actually take a pulse because he moves or tries to pull away when I do.

Dominic is in a very stable position with his heart now. This last surgery healed him to the best that his heart can be healed.  I can't imagine having a baby with a more serious ailment, where their heart would never function like everyone elses. I probably wouldn't allow myself trips to the bathroom.

At the same time, life is a part of death. We were born to die if nothing else. It will happen to everyone. I just hope that Dominic and Rosalie and Brayden outlive me.

Return from Edmonton

We are now back in S'toon after a surprisingly short trip for Dominic's surgery. Apparently Dominic is now a pro at surgery, I don't know if that is really a good thing or not.

Dominic was discharged from Acute Peds mid afternoon on the 25th, so we decided to stay one more night rather than rush back, just because the weather in Saskatoon had not been favourable as of late, and we didn't want to battle with slippery roads. Instead we left the following morning and it was a really uneventful drive home.

Things are just as busy at home as they were before we left. Perhaps even more so. It seems like every doctor that was involved in Dominic's care in the past now wants to have an appointment with him. So that is filling up our schedule quite nicely.

So my apologies while my blog becomes quite neglected over the holidays. Perhaps I will be able to post more in the new year, but don't hold your breath! I know I won't be ;)

Not Home Yet

After being told repeatedly for 24 hours that today would be the day we get discharged we are still here in Edmonton.

So I was pissed.

I know I should be used to this by now. That I should never plan for a discharge until it happens. I should not get my hopes up and get too excited. I should never think things are going better than expected.

But I also shouldn't complain. If Dominic went home today, that would have been a full day earlier than the best case scenario we were given before his surgery.

It's just so frustrating. Dominic is superheroing this surgery. He is off all of his pain meds (with Tylenol available if he needs it) and only on the meds he was on at home before his surgery. There have not been any concerns about any aspect of monitoring he has been on. He is tolerating the volume of feeds he had prior to surgery. His incision looks great with no swelling, redness, or discharge. So why the eff does he still need to be in hospital? Their argument: he isn't on a scheduled feed system, he is on continuous feeds (Which I asked to change 3 times yesterday but it never got done). I think that's a bunch of crap. I can't help but think about how much this extra night stay would cost if we were in the United States and what a waste of a bed it is to keep him when the hospital is so full.

In any case, we should get released tomorrow. Depending on what time that happens (nothing happens quickly), we could be home tomorrow or more likely Wednesday.

Assuming no one comes up with any bullshit reasons to keep him...

Edmonton Trip #3 update

I don't know why I think that I will have more time while I am in Edmonton. I spend so much time at the hospital that I only sleep, eat, and pump boob juice at the hotel. Oh, and shower. I shower sometimes.

Anywhoodle, to the matters at hand.

Dominic has had a great trip to Edmonton this time around. The CT scan he had back on Friday came back totally fine in every way. There is no leak to complicate his recovery or require another surgery. He was extubated shortly after, a bunch of tubes were removed yesterday, he was off most of his meds too. Then today they removed to rest of his tubes and wires except for his peripheral IV and his pacing wires, just in case ;), and weaned him off the rest of the meds that he wasn't on before his surgery.

So we are one Echocardiogram away from coming home. Assuming all goes well tomorrow, and it comes back A-OK we are as good as home.

But I'm not saying that. Not out loud. Not in a way that can get jinxed by saying such things. ;)



(This is kinda a short post. I sat here for a bit trying to figure out what else had happened with Dominic that I could write about, but everything has happened SO fast this time around, I think that I pretty much hit it all. Weird)

Edmonton Trip #3

So. We're in Edmonton again.

I know, I know. It seems like my whole blog is either about going to Edmonton, being in Edmonton, or returning from Edmonton at the moment. But bear with me. Really, that's all that's going on, and hopefully we will be done with Edmonton for a while after this trip.

We arrived on Tuesday evening in order to be here for Dominic's preadmission clinic at 7:00am (why? WHY do we always have to start these things so early? That's 6:00am Saskatchewan time, we were up at 5:00. Gross). A lot of what we did was the same as last time, but they gotta do it all over again every time he leaves and comes back. We also talked to the surgeon about the plan this time around (he was also the surgeon that did his first surgery) and he was great about putting my mind at ease without sugar-coating anything, and I love that about him. There are risks, I now know what they are, but the surgeon is cool and confidant without being arrogant. That doesn't mean I didn't cry a river this morning once we got to the hospital. I'm a mom. I'm supposed to worry. But Dominic doesn't make it easy to let him go. Even though he hadn't been fed since 3am he was content from the get go. I think he knows the routine already. Once the admission nurse had finished assessing him, he snuggled right into me, we sat and cuddled (and I shed a few tears periodically) right up until he went into the OR. They even let me continue cuddling him on the stretcher as they wheeled him from admissions to the OR waiting room. Great cuddles. But then the time came for him to go in and a nurse came to take him from me, and it was like Dominic knew it was coming. He had slept in my arms almost the whole time until a moment before the nurse came and then his eyes popped open and he grabbed my shirt. As she took him he started to cry, and then my waterworks turned on as he started to cry and clutch my shirt, I gave him a last big kiss, pulled his hand from my shirt and he was gone.

That's the toughest part. I kissed him about a million times during those cuddles, because I couldn't help but think the worst. That may have been my last kiss ever, so I kissed him 5 more times. But then THAT may have been my last kiss, so I kissed him another dozen times.

Then he goes and there is the waiting. They told us there was a possibility if everything was super easy that it might only be 2 hours, but it was more likely to be 4. We decided until then to go back to the hotel, being so close has it's real advantages. So we went back and I cried in bed until I fell asleep, woke to my alarm at the 2 hour mark and snoozed for another 1/2 hour. I really wanted to be there right when he got out, but I was so tired. Didn't get much sleep last night. I got to the hospital around 11:00 and checked in with the Pediartic Cardiology Intensive Care Unit (PCICU), to see if he had come out of surgery and to them yet, but he hadn't so I parked my butt in front of the unit and waited for the doctors to come see me.

Around noon, the 4 hour mark, the doctor did come to see me and told me that everything had gone, basically perfectly. They had a lot of back up equipment available in case things had gone wrong, because although there wasn't a high risk of things going wrong, if they did, and they weren't prepared, things could easily take a really bad turn. But none of that stuff was needed. Dominic did great, he was stable throughout the entire procedure, no complications, everything that they needed to do was done, and done with relative ease. After coming to see me to tell me he was out of surgery, the doctor did come back to say that after they had reviewed the video footage of his surgery (who knew they recorded all of the surgeries with these cath cameras?) to say that there was about a 2 frame moment where it looked like there may have been a leak near one of his pulmonary arteries. So they are just gunna do a CT scan tomorrow to verify if it is there or not. The doctor speculated that it if is actually something, it's really tiny and nothing big to be concerned about and it would probably close up on it's own, but better safe than sorry. So we gotta check it. Worst case scenario, it's too big to close up on it's own and they would need to go back in and put in a stitch to close it up. Not ideal, but at least if we do have to do that, they caught it early. Not in a week when we think we are almost going home.

About 1:30pm we were able to go in to see him and we were lucky enough to have my favourite PCICU doctor on and one of my favourite nurses was the Resource Nurse today. He got his same bunk back, he has way less tubes and equipment than he did last time, he's not on as many meds, and he's doing really good.

So although having your kid go through surgery is never a walk in the park, today was a pretty good day. Let's hope the weekend is the same!

~*~

Check back soon! I'll have a little more time to post while we're here, so I've got some posts waiting that need to be polished and then posted, and I'll also keep the blog in the loop about developments with Dominic.

Home Again, Home Again, Jiggity Jig...

We arrived back from Edmonton again this evening after a short, yet seemingly useless trip.

Dominic had the cath procedure yesterday, but they did not end up doing anything to his pulmonary arteries. Long story short: it was deemed too risky and unlikely to work once they got inside his heart and took pictures. So it was determined he will have to come back for surgery in a couple of weeks. This will involve opening up his chest again, and if a less invasive surgery goes wrong, then they will be prepared to change it to a bypass surgery and change his whole conduit out. So basically, they would redo the surgery he had when he was 10 days old. 

So aside from poking a few more holes in Dominic, nothing was accomplished this trip. He is in the same condition he was when we left Saskatoon.

I am SO ready to be done with all of these surgeries...

Back in Edmonton

So here we are. Back for another procedure at the Stollery. It's funny how it feels like we never left, but at the same time lots of little things have changed.

I am truely exhausted today. Travelling all day for reasons that are not considered "leisure" isn't fun. I remember road trips to Edmonton in my early 20s where the trip there was some of the best parts of the trip. This time it was just long.

Today didn't relieve the exhaustion. We were up at 6:00 to be up and ready for Dominic's 1st appointment at 8:15 (ultrasound of his clot). After that it was off to get a general assessment and echocardiogram, then a quick lunch and to his preadmission clinic. The clinic took over 3 hours so we didn't leave the hospital until after 4:00 and I was just beat. I think we all were, but life doesn't just stop, and things don't just take care of themselves, so we ended up being steadily busy the rest of the day.

It has been determined that Dominic will be having the cath tomorrow and they are going in through his neck. Long story short, there are about a million ways this can go wrong and it can go as well as perfect and he could be discharged Friday after 24 hours of observation. Another possible outcome is that they could find out that he needs open heart surgery anyway once they are in there and we could be here for another month (or longer).

But one step at a time.

Think of us at 7am Alberta time when Dom goes in and hope that all goes well!

Halloween and an Official Date

Halloween is exhausting. Not that it isn't totally, 100% fun filled exhaustion, but I really feel like I could sleep for a week after today.

We hadn't really thought we would be in Saskatoon for Halloween, and even then it was the furthest thing from our minds. Since we were told when Dominic was discharged from RUH that he would be going back to Edmonton in about two weeks, we thought we would be there this week. So last night I figured I should go get Rosalie a costume so that she could go trick-or-treating. I honestly thought it was a long shot to find anything on the night before Halloween, but luckily I was wrong. I stopped at Halloween Universe on 8th St in the Grosvenor Park Shopping Centre and found that they had OODLES of costumes there. So I decided to get one for Dominic also so that they could match. I figure by next year Rosalie will be telling us what she wants to be rather than us picking for her, so if I want to make them match, this is the last year I can guarantee it.

So here are my two little crayons...

I think they are pretty much the cutest ever.

This really was Rosalie's first year where she "got" the whole trick-or-treating thing. Last year I think she had fun, but was just doing what she was told. When we told her about trick-or-treating this afternoon she got really excited. And when she says "Trick-or-treat" it comes out more like "Tick-o-weet" and her "Happy Halloween" is more of a "Happy Ween!". So sweet.

~*~

In other news, we now have our official dates for heading back to Edmonton.

We were informed today that we have been booked for Dominic's Ultrasound, Echocardiogram, and his preadmission assessment on November 5th, and his cardiac cath is booked on the 6th. The cath isn't totally for sure yet, they have sorta "pencilled him in" pending the outcomes of his echo and ultrasound, but I remain optimistic. If they chose to schedule the cath instead of the surgery that has to mean that they think it's more likely, right? From the sounds of our timeline, it is promising that if the cath happens we may be home for the weekend. Drive up Tuesday, assessment day Wednesday, Cath Thursday, overnight observation, and then home Friday. Let's hope all goes that perfectly!!

"We're fine here. We're all fine here... now.. thank you... How are you?"

(Bonus points for naming the movie that the title quote is from... and we can also be best friends)

I realize it's been a while since I posted and it's actually not because my house has exploded or we've all died or something. Actually things are going pretty well, we have settled into a routine, but there are very few minutes in the day that are not spoken for by important procedures/events/whatevers that need to be done. In fact, writing this post is cutting into my sleep time, but I have a huge sense of guilt stemming from leaving everyone hanging on the last post, which was so negative and stress-filled, when things really are going ok.

Dominic is doing well, he really is basically just a regular baby if it weren't for all the meds he's on, and the feeding tube, and the heart surgery pending... Ok, so he's not a regular baby, but he acts like one. As far as we can tell he is on target for all of his early milestones: He's getting better at holding his head up, he will hold toys in his hands if you put them there (for very short periods of time), he makes eye contact if you are close enough... just regular baby things.

We still don't know when we are heading back to Edmonton yet, but it should be soon. We were told when we were discharged from RUH that we would be back at the Stollery in two weeks, and if they meant EXACTLY two weeks (which they didn't, but it's a reference point) we would be back there on Tuesday. I hope to know early this week, but who knows.

There will probably be more hiatuses in the future, so don't worry about me! I will post when I can, I promise... and if you are here for the book reviews... they may be a long time coming now, no time for such hobbies right now ;)

"I can't do this"

/\ /\ This is exactly the text I sent Roland at about 1:00 yesterday afternoon.

Yesterday was not as perfect as I had expected. I expected sunshine and rainbows, but instead I got dark clouds and rain (both in the form of tears and shattering dishes)

The truth is that taking care of Dominic is about 100 times harder than a regular infant, and about 50 times more than I expected. Don't get me wrong, all kids have their challenges, but today I realized I am not entirely equipped for Dominic's. I realized it's impossible to prep Dominic's feeds, feed him, pump to provide food for him, medicate him, hold him, feed Rosalie and keep her happy. There just isn't enough time. This resulted in all of us crying and two of us bleeding by noon yesterday. This is not the blissful homecoming that I wanted and expected.

I know that we just need a routine, and thing will get better with time, but part of me is so angry because this was not part of the plan. We planned to have 2 babies, but we planned two regular ones. If Dominic didn't have the 22q with a cleft lip and palate we would be fine. If he could just breastfeed that would free up SO much of my time. Without having to pump and/or prep feeds every 3 hours I would not be constantly on the run. Not to mention that I loved it with Rosalie and feel it was stolen from me with Dominic.

I was so mad yesterday, about all those advantages I lost with Dominic, but then I went to bottle feed him and he looked up at me with those big blue eyes and I cried. But this time it wasn't an angry, frustrated cry-- it was a guilt laden cry. How could I be angry and wish he was something else? He's my baby and always will be. I just have some adjusting to do.

Thankfully I have a very supportive family. My mom took off work today to help me, just having her there made so much of a difference. With two of us there, at a few points it felt like I was standing around doing nothing, but I know that if mom wasn't there to occupy Rosalie, she would have been coming to me for that attention, and that's where it starts to get difficult. I think that I am going to have to get used to the fact that I most likely will not get my naps in the afternoon. That may seem like a silly loss to most people, but I seriously need my afternoon naps or the sleepy demon comes out. Caffeine may be my best friend or my worst enemy, I guess the next few days will determine which. I also think I am going to have to accept that my job during the day is to just "keep the ship from sinking". I have to leave the laundry, dishes, clutter clean up, etc until Roland gets home in the evening. Food prep is even a questionable venture (why oh WHY did I think I needed to eat those freezer meals while going back and forth to the hospital instead of when Dominic came home?)

We just need to figure out this new family routine now, and things will get better. I need to learn the ins and outs and tricks of the trade with Dominic and his meds and feeds. Rosalie needs to adjust to not being the baby anymore (HA!), however I think she knows she will always be the princess though.

Home Sweet Home

Dominic is home for real this time, much to my surprise.

The last 2 days we were given passes for 8+ hours and they went great. It was fabulous to have those hours of family time to see how things went and realize that we can actually do this. Although it was a bit disappointing to bring him back each night, it was comforting to know that he was being monitored by someone that was awake and qualified to help him if he needed it. Not to mention it was great to get a good night's sleep (but I don't think I'm supposed to say or think things like that as a parent...)

I was told by the cardiologists last week that he likely wouldn't be able to go home until after their conference call with all of the cardiologists across western Canada (which happens every Tuesday by the way), so I was expecting to get the go ahead to go home on Wednesday morning. But if I have learned anything from Dominic's hospital experience, nothing is predictable. I should have known. This morning when I went to see him, I had Rosalie in tow. Up until this point we have tried to keep her hospital visits as short as her attention span , which if you know any two-year olds you know it's pretty short. So the plan was to clarify my day pass and then get the heck out of there, but when I arrived my nurse asked what my plan was, I told her, and was then informed that they won't be approving a day pass because he needed to be in hospital in order to be discharged. I was happy about this, but the situation was not ideal. I hadn't planned on doing anything at the hospital, and now I had to  (wanted to, really) feed him before heading out. Also, I wasn't ready at home. Things needed to be done that I was planning on doing after I returned Dominic to the hospital that night.

But all of the necessities were done before he got discharged, a new plan is in the works for Edmonton, and I am SO happy to have my boy home. 

He's Home!! (Well... Kinda...)

I've stopped posting things that may potentially happen because they never seem to pan out. I have been disappointed on this journey so many times that I don't see a point in getting everyone else's hopes up too. Although the kicker is that I always have the urge to blog and complain when they don't happen, but if I do that I might as well post about the initial hopeful moments along with the following disappointment. So silly...

So that's the reason for the bit of a hiatus. Nothing ever panned out like I had hoped, and there has been very little change while Dominic has been in the hospital here.

Recently, Dominic has had some difficulties with his picc and IV lines. They kept failing for one reason or another and attempts to replace them were often very difficult resulting in numerous pokes that didn't work out. After losing his picc from Edmonton, all attempts to replace it failed, losing the 3 IVs they eventually got in afterward it was decided to just cease his IV antibiotics 2 days early. I was torn about this. I worried that stopping the antibiotics early might effect the outcome. What if Dominic needed those last 2 days to permanently kick his infection? But being off the antibiotics would mean he didn't need an IV anymore so they could stop poking him trying to get one in AND not needing the IV meds for those 2 days meant that he might be able to come home 2 days earlier.

I begged and nagged the doctors to let him come home the following day but the cardiologists said they had passed care to the Pediatric unit so it was up to them, but the Pediatricians were saying that there was an order not to let him out on passes or discharge him until cardiology had been consulted. So I got the run around for a couple of days until I was able to talk to one of the cardiologists I was familiar with. We talked about going home and he wasn't comfortable with that because if the infection came back we would have to go to the ER to get readmitted. Frankly that didn't sound good to me either. So I threw out the idea of going out on all day passes and coming back once or twice a day to get his vitals checked. We compromised on day passes but he would come back in for observation on nights. And we wouldn't do that until his first blood culture came back negative after 48 hours. I was ok with that. 

So today the culture came back negative, but the pediatricians are still a bit nervous about him so it was decided he would get a 4 hour pass today and if it goes well, I can get an 8-10 hour one tomorrow.

So it was a pretty great day.

Still don't have a clue about his actual discharge date though...

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.

About the Stroke...

I think this has been the hardest obstacle to overcome for Roland and I since Dominic has been born. His heart surgeries were predetermined and his cleft lip and palate are an inconvienience right now, but both his heart and his palate will be fixed in the future. And once they are fixed they will be in perfect working order. Both will function just like anyone elses heart or palate would function.

The difficult thing about the stroke is that it isn't fixable, and it is large. No surgery can fix what has happened. This damage to his brain is permanent. The stroke damaged about 75% of the right half of his brain. The most effected areas was his movement and coordination sections, and there is a possibility his vision and personality sections were damaged as well. When I asked about cognitive learning, the neonatologist stated that cognition is pretty much everywhere, so it can be assumed that will be effected as well.

Now, that being said, not everything is set in stone or completely predictable. Being that Dominic is SO young, and the neurologist thinks that this stroke probably happened in utero, he was still building his neuro-pathways when the stroke happened. In contrast, had this size of a stroke happened to an adult, they probably wouldn't have survived. His brain will adapt where it can, and he will have lasting effects when it can't. But no one will know what those effects are until Dominic gets to a stage in development or has difficulties in some areas or whatever. We may start to notice it when he starts to reach expected milestones in his baby development. For example, lifting his head while on his tummy, or sitting up, or walking, or talking. Right now he looks and acts like a regular baby (well, a regular baby that has a cleft lip and palate and has had heart surgery), he is not yet showing any favourtism to his right side, and he is still kicking with his left foot and grasping with his right hand. He is seeing a Physiotherapist once a day and we have also been told exercises we should do with him to help keep his left side moving and working. Meeting with the neurologist specializing in strokes and talking to the neonatologist have brought us some information that may be considered comforting or at the very least giving us less to worry about. The neonatologist stated that if he was going to have seizures from this stroke, he would have had some already, so it is unlikely he will have any in the future (the potential 22q11 deletion seizures are another story), and both the specialist and neonatologist have said that having this stroke does not make him more likely to have another one. A Neurology nurse is meeting with us on Tuesday to give us some resources on how to help him in the future, but other than that we are sort of done with this stroke. We just have to accept it, understand that his future is uncertain, knowing that we will need to help him, and move on.

What is really more of a concern right now is what is going on with his heart. We are still not sure if he will need to go back in for surgery, tests are still being run to make sure that the conduit really is the problem. The bacterial infection that could be cleared out by antibiotics is still a possibility until tomorrow. If his blood cultures come back negative between now and then, then we don't need surgery and he could be on his way home.

But, as always, for now we wait...