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.