Finding J-O-Y

It is good to have an end to journey toward; but it is the journey that matters, in the end.

Ernest Hemingway


This opening paragraph is an excerpt taken from an email from a new dear friend of mine who got to have her own NICU experience this year and I asked her if I could share it:

 "I spent a great deal of time last year trying to decide what my new years resolutions for this year would be and finally decided to only have one, and it was to find and experience joy. Ironic that I spent the first month and a half in the hospital! The amazing thing was that I have been surrounded by joy and you have been the star of the show and my greatest example of that so far! Thank you! Keep finding joy! I think you're amazing!"

I found (and find) Jaime's words SO inspiring (and wonderfully kind)!  How simplistic is that for a resolution?  Find J-O-Y in life.  Even when you (that would be me) are in the worst crisis of your life thus far there is still joy there, sometimes you just need to look harder.  Braeden is certainly my joy.  I've experienced such love and devotion for this little guy, not to mention disbelief that he can continue to fight his fight and succeed.  It is a horrific road to travel when your child is clinging to life but it is a road that also opens you up to receiving joy in many different ways.  It certainly has been a struggle some days but I've tried to remain open to the positives in my day and to me positives = J-O-Y.

Lia's Rules for J-O-Y:

1. It is unlimited, you just need to look for it
2. Take the time to pause, J-O-Y is there
3. Listen to your friends and family when they compliment you, don't try to justify it.  If they see it and say it then it must be true.
4. Find the simplest things in life, they can bring the most joy
5. Embrace L-O-V-E for yourself and others, we certainly don't need to be 'in love' to experience pure love and joy  

Meeting Kelsey

I suppose really in a funny kinda way that I am thankful for all that has happened in the past few months.  I've had to live my life day-to-day or hour-to-hour and for that I'm thankful.  It is so easy to overbook ourselves and never take the time to just 'be'.  Living life in the moment is intense and I don't necessarily suggest a long haul at it but I would suggest that you do it for a week.  Don't schedule things until they come up if you can, take life one day at a time for one week and see what happens and how you feel.  For the past several years it has seemed as though time goes faster and faster but when you live life day to day it really just all slows down.  In many ways it surprises me that Braeden is coming up to 16 weeks but also in many ways it has already gone too fast.  One foot in front of the other, one day at a time and finding my J-O-Y along the way.

The joy in life is to be used for a purpose. I want to be used up when I die.

George Bernard Shaw

One thing as parents that we generally forget to do is take any time for ourselves.  I'm a perfect example of that, it is to the point at times when I do find myself alone that I'm not sure what to do with myself anymore!  What I've done to work in time for myself these days is that I have a book to read in my bag when I go to the hospital and when Braeden crashes then I have a little bit of time to myself to read (which has always been one of my favourite pastimes).  Sometimes I do it while holding him and sometimes I just take in the joy of being in his presence while he is asleep in his crib.  Another thing that I find helps is to take a short walk (as I am certainly not finding time for exercise these days!).  I find taking the walk harder because I feel that I never have enough time with Braeden but I also know it is important for my own mental health.  When I walk, I think, when I think I can clear my head and look a little bit into the future or face the next hour of my day.

Our children grow far too fast, how many times have you said to a child (yours or someone else's), "How did you get so big?".  My children have brought me the biggest J-O-Y of all in my life and have challenged me as a person and a Mom more than I ever could have imagined.  Up until October 2011 I thought that I would have a lifetime to enjoy my children, I was one to believe that 'that won't happen to me'.  I suppose that is a common thought until it does in fact happen to you or someone you know.  Almost losing one of my children (on several occasions) over the past few months has opened my eyes even further to the fragility of life.  We've all known someone that has left us and this world too young but when it is the possibility of an infant it just seems so impossibly cruel.  I think that is why I've strived (and struggled) to find positives in each day, to try to come to terms with the possibility of losing him.  Braeden still has an incredibly difficult and tenuous journey ahead of him and each day, week, month and year we have him I need to find the J-O-Y in that.  I think it is every parents nightmare to outlive a child so the blessing in disguise Michael and I have here is to truly enjoy each and everyday with our children, to see their J-O-Y and as a result fulfill ours.

It is not a perfect science but it works for me.  I've fully experienced the last few months of my life and I'm not sure how many people could really say that.  How much of life is really physical and how much is simply mental?  I know for me that when I can take the time to find J-O-Y then the physicality of it really isn't so hard anymore.

Joy is a net of love by which you can catch souls. A joyful heart is the inevitable result of a heart burning with love.

Mother Teresa

Green Milk = Luck of the Irish?

I realized after logging off last night that I didn't do any updates in regards to Braeden yesterday...

We had a busy day yesterday with Genetics and a visit to ENT for a scope.  We finally got to touch base with genetics after the discovery of the cysts in the kidneys.  Unfortunately it is another piece of the Braeden puzzle but not one that points genetics in any particular direction.  The geneticist feels that they are not really much closer to solving the 'Braeden Syndrome' but for me to keep in mind they are looking into syndromes that are very rare.  The one that she has her eye on that she is looking to test him for is 'Costello Syndrome', this is a particularly nasty one as the children with this syndrome have a 1-5 chance of developing cancer(s) early in life and they seem to be in a fairly constant level of pain all over.  It is a VERY rare syndrome with only 200-300 people worldwide with this condition...yikes.  She feels like it isn't a huge push to test for it, it is just another to cross off our list.  She is so casual about it that she is going to wait another month for his blood to clear out all of the transfusions so that we get a clean Braeden sample.  I did read up on it a bit before bed last night (not a good idea, it was an Ativan night to get to sleep) and I was surprised to see that I could see Braeden's little face in the pictures of the kids with this syndrome.  No need to get ahead of myself until it becomes a reality but it is pretty scary.  It goes to show you how out in left field B is for the Dr's if they are now looking at things that are so genetically rare.  The other new thing is that they are going to be taking photos of B as he grows so that we have a comparison as well for the file.  If you want to research this condition, do so at your own risk, it is not pretty and it might just stress you (I mean me) out till it is diagnosed or not.  She did go through and add up his genetic anomalies and there are SO many.  We all have a few if you look for them but Mr.B has many, just not so that they all fit into a puzzle piece of who he is.  I've been saying all along that something must be there genetically but what?  The genetics Doc is also ordering some more metabolic tests to rule out some of those as well.  Hurry up and wait and see.

We had an adventure yesterday by getting to go down to the ENT offices for a scope of B's swallowing and vocal cords.  We transported him via crib to the office and I got to sit in a chair (similar to a dentist's) and hold Mr.B while the ENT (Dr. Brookes) put a scope up the nose and down into his throat.  He was then given green (yes, St.Pat's GREEN) dyed breast milk via a syringe and then we all got to watch him swallow it (or not).  He was able to take a few sucks off a bottle of green milk too but he wasn't too keen on it since he's not ever had a bottle before and he was even more unimpressed that he was hungry (they stopped his feed a few hours earlier) and had to work for his food for the first time ever in almost 16 weeks!  Poor kid! He did well, as well as can be expected without fully functioning vocal cords.  Dr.Brookes was happy with what he saw and he felt there had been some progress since the last scope.  The SLP (speech and language pathologist) is still erring on the side of caution and doesn't  want any kind of oral feeding or tastes.  I'm not surprised by this, it is certainly unfortunate though but it is just another thing we need to wait on.  When I spoke to Dr.MacNeil (B's new Paediatrician, she's on the 'purple team' or the long term care team) about it this morning she wants to err even more cautiously by leaving him on his 24 hr feeds and not put him back up to bolus feeds as Dr.Brookes suggested.  Caution is good, it is just time consuming! Bah, it will all come, sooner or later. 

I also voiced my concerns to Dr. MacNeil about the fact that an RT had weaned B's oxygen yesterday from 30% down to 25%.  It might not seem like much but it was only an hour later that it had to be put back up.  I expressed my confusion about the fact that we were told repeatedly that they were NOT touching his oxygen this week...apparently Dr.MacNeil wasn't too impressed with this finding either.

Tomorrow is my first solo flying day since October, my Mom is heading to the airport as we speak!  I'm not too concerned about it, I'm just not going to have a clean house, well chosen meals or clean laundry anymore!  It will certainly be a huge adjustment not having someone here for support and my Mom did so many small things along with the big that I couldn't name it all.  So another huge thank you out to my super Mom that has sacrificed her own freedom and life for the past four months to come and live ours with us.  If you happen to see me in the next week and I am walking dazed you'll know why!  I am glad though that she got to have a loooong and sweet cuddle with B today for a few hours, that is all the currency I have these days not having a job and all! :)

Other than Mom leaving today (for sure this time although it is snowing...), it was a pretty uneventful day for Mr. B.  It is nice to have relatively quiet days now and not be waiting, chewing my nails for the other shoe to fall.  Not that I think the drama is over, far from it, but I'm enjoying the quiet whilst I can!

"The family is one of nature’s masterpieces"
- George Santayana

Looking Back and Facing Forward

I've been reading back through the earliest blogs and I am certainly surprised, not at my spelling or glaring grammatical errors but at MY lack of understanding the magnitude of our situation(s).  I think that when you (and by you I mean me) are smack in the middle of a crisis (most possibly the biggest of your life) you just cope with what you have.  It wasn't until after that I realized how sick I was during my time at Foothills and I certainly didn't grasp the magnitude of Braeden's in utero issues.  Don't get me wrong, I was terrified but I don't think I ever let myself truly believe that he wouldn't make it, or that he couldn't.  I could have been so terribly wrong four times now.  I guess that is what is shocking, the numbness that you feel and the bubble that you fit around yourself for protection of your mind and spirit.  I certainly was in great denial when Braeden had the sepsis, and this was even asking the Dr if he would make it and she couldn't look me in the eye.  I guess the possibility was always there of losing him (and still is really) but when I read back on those earlier days it strikes me as somewhat unemotional, which is certainly NOT what I was feeling.  I didn't absorb that Braeden was one of the most complex cases when he was born nor did I realize that his little life was going to bring me this much heartache and joy all rolled into one little man.

I remember meeting Jaime and her husband Mike for the first time at the lockers in the NICU and thinking how I just wanted to give Jaime a hug because she looked so stricken.  It turns out it was kismet that we met and our sons (both our third) were roommates for a short while, but I just remember thinking how stressed out they both looked and could see the pain in their eyes.  I am going to assume that was me when we first got there as well, I just didn't know it at the time! 

Some of the most commonly asked questions I get throughout this is (I know I've mentioned this before), "How are you guys doing?" and "How do you do it?".  For the first I am really at a loss, I don't know in the moment how we(I) are(am) and I really don't know what answer people want to hear.  When Braeden was at his sickest people would ask me with a hopeful smile and I wouldn't know what to say, I certainly didn't want to ruin anyone's day!  How do you put into words that your child's life is hanging by a string and you have no way to prevent that string from snapping?  I would start to tell people the truth and would see how it would upset them and I really didn't want anyone to have to experience my pain or try to put into words how I was possibly feeling at the time.  I think one of the biggest (hardest) things for people is how long he's been in the hospital for.  I couldn't seem to convey to people that he wouldn't (and won't) be coming home anytime soon.  How do we do it?  I don't know, you just do what you have to do when life hands you some speed bumps (or in Braeden's case a friggin mountain).  I get up each day and I put one foot in front of the other, that is how I do it.  Do I feel as though I am doing all I can?  Nope.  Do I feel that I am giving Braeden all he needs?  Nope.  Am I being the best Mom I can to Torin and Rylan and the best wife to Mike?  Nope, nope, and nope, but they all love me and they are all going through the process with me.  That is how I view life right now, a process.

The one thing that is missing the most from the blog is the outstanding support and overwhelming love and acceptance that you receive from the nurses.  I was so blessed with the Labour and Delivery Nurses I had at Foothills, both on the 5th and 4th floors (Antenatal).  I wish now I had taken the time to write down their names to thank them all personally.  They were so kind to me and followed me after I had B as well, coming over or upstairs to offer me supportive words and hugs.  I don't remember much of my hospital stay now (and it would be a lot less without the blog) but I do remember kindness, so much of it.

I really thought I had been through a NICU experience when I had T but the five days that Torin spent in the ICU was not really a preparation for a life of 102 days.  102 days that I would never want to repeat or wish on anyone but 102 days that I wouldn't change.  It is simply due to the NICU nurses that I made it through this period as unscathed as I did.  They made me laugh, made me annoyed at times, and yes, some even made me cry (but not always in a bad way).  I found love and acceptance with humour and most certainly sarcasm, oh, lots of sarcasm!  I also found out that I can be out smart-assed as well.  In all seriousness it takes a very special individual to work with an infant on the brink of life and death.  They are the smallest beings and in need of the loudest voices when I comes to care and attention.  The nurses take their jobs very seriously and you know that they fall in love with 'their' babies too.  We received tireless commitment and open honesty.  Braeden definitely had his difficult moments (sometimes hours) but each nurse there had their tricks on what would work with him and the biggest thing was patience.  Oh the patience.  The nurses are patient with crazy, emotional, over protective parents, they are patient with the Dr's and most importantly they are patient with their babies.  They wait for the babies to tell them what they need and then they will do their darnedest to provide it.  I won't forget the sacrifice Trish made to come in on her day off to attend a meeting about Braeden, sacrificing her own time.  I also won't forget how they went out of their way to still make Christmas special and memorable in a good way.  I hope for those of you reading this that you know how much you've touched our family and Braeden and just how much my sanity relied on your patience.  I've talked in length at times of the amazing Dr's and my respect for them but nothing comes close to the respect I feel for each of those nurses and what they sacrifice to be there and present in their jobs each days.  Thank you seems inadequate to those that have offered so much to us over the past few months but those are the words that I can't say enough, THANK YOU!

I am also thankful that the trend of great nurses is continuing!  When I think about another 3-6 months in the hospital it doesn't really faze me, it's not something I can change.  I know B is where he needs to be and I am at peace with that.  Wouldn't I rather he be home? Certainly but I'm not going to be in denial, he needs care and will most likely need a great deal of care for the rest of his life.  I am putting positivity out to the universe that we will continue to have fabulous nurses, RT's and Dr's looking out for Braeden's best interests.  I'm not looking for a smooth road ahead, just one of fewer pot holes would be nice!

Blood Drive Success!

What a day yesterday was!  Thanks to CTV's coverage (thanks Bill MacFarlane), we certainly got the word out about Blood Donations and their importance.  It was certainly amazing to watch the story unfold on the news, to watch our sweet little man on there (not to mention my cute husband!).  It was so very kind of Bill to give the special 'shout out' to the boys as well, it meant so much to them.  It is definitely difficult to understand why people just want to talk about Braeden all the time when they've got cool things like an elevator panel and Lego's to show off! 

 CTV Calgary - Blood Drive Gives Back(to view the video, click on Tara's picture on the right hand side)

Michael and I were at the downtown Blood Bank location from 9-1pm handing out cookies, oranges and water to people donating.  We met some wonderfully supportive and kind strangers (do they qualify as strangers if they hug you?).  A huge thanks to Lonnie and Jen (and Isla too) Nahu for the donation and extra time they spent with us for entertainment!  Also thanks to Nancy Osness, sorry we missed you!  We are already in the process of setting up the third Blood Drive, date to be announced once it's in place.  For more information please visit our Facebook page: Baby Lousier-Hicks Blood Drive

It is a bit overwhelming to see that the blog was viewed 1000 times yesterday as well. One word, WOW.  I am amazed that that many of you took the time to take notice of us and our quest to give back.

Mr. B is settling into his new room quite well, he was officially moved into the Gold wing on Sunday night.  The Dr's are just letting him be for the week to give him a chance to settle in completely and let them get to know him and his needs.  I am excited (not sure if that is the right word really) to see how he does next week when they start to wean his oxygen a bit.  I have full confidence that he'll be able to manage on a lower flow amount and well, if not then what are ya gonna do?  We have nothing but time now and I think that my goal to have him home by his first birthday is still a good goal to maintain.

This has been one hell of a road that we've been on these past four months (I went into hospital to stay Oct. 26th), and I am almost certain that when I look back on it in another year I won't know how we did it.  What I do know is this little boy has the power to move people!  He is such an amazing fighter, I don't know how he's made it this far but I am certainly thankful.  I can't imagine having him any other way, we might not have him healthy but we have him and he is ours as we are his.  People with typical kids may not 'get' this but I feel so thankful that I have special (specific?) needs children (it is terrifying, don't get me wrong), as they make us better people.  So much of our lives go by in a blur but when you have a child or children with needs greater (different?), than others sometimes you just have to learn to stop (of course it is the same when you have a child as smart as Ry as there are times when I need to plan my next move!).  Autism is not what Torin HAS it is simply who he IS and whatever they can find out about Braeden will not define him, it will just help us adjust our parenting style to suit his needs.

I may not qualify to win any 'parent of the year' awards anytime soon (at least the positive kind, not the 'oops, kids might need therapy kind'), but what I do know is I am one lucky Mommy!

Photos by Andy Nichols

These are Andy Nichols' (Documentary Photog Extrodanaire!) shots from our Documentary piece on OpenFile.ca about Braeden's need for transfusions.  He has kindly shared them with me to post so please don't copy any of these (I'll happily print any of them), they are Andy's property not mine.

What is left of his red hair (what hasn't been shaved off to provide spots for IV access)

My Favourite

J-O-Y

Adding some 'blow by' to get his SAT's up

L-O-V-E

Andy's article and video on OpenFile

The Big Move

First visit with Jodi

Well we did it, we survived The BIG Move upstairs to Unit 2!  Braeden was a champ, screaming (silently) his head off and turning purple in the elevator...is it so wrong that it doesn't faze me when my kid turns purple anymore??  We have been put into the respiratory wing of Unit 2 so it is more closely monitored than the rest of the floor.  I am confident that he is ready (as am I) ready to be up there and I am hoping that this will be the last of the ICU(s).

I had to laugh when we got upstairs yesterday because Eva (the most lovely polish nurse on the ICU), was talking up Unit 2 the whole day up till the move.  She was telling me that I'll be able to sit and relax and look out at the view...yeah, I'm looking at the staff parking lot!  Oh well, it is a nice little room and we are literally 5 steps from the nursing station so I know that maybe they can hear him if they listen although I did walk in tonight and he was screaming his fool head off...sigh.  It is nice to be in a 'real' room now, there is even a bathroom, yippee!  Whomever designed this hospital did have parents in mind as well due to the single bed in the room for Moms and Dads.  We are pretty much settled in but we aren't getting too comfy as he'll most likely move rooms in the next day or so when they are done construction on two new rooms (one of them will be ours).

Braeden is also getting geared up for more snuggles now, so you'd better sign up!  I am certainly open to him having a few more visitors now that he is getting to a more stable state, just please, please, please make sure you are not sick.  He is still only really able to have adult visitors (aside from the brothers) just to keep down the germ factors, YES, I did just call your kids (if ya got em) germy! :)

So now we wait...

Reality Slaps You in the Face

What a long day!  We had a good day and a kind of heart wrentching reality-slaps-you-in-the-face kinda day.

It was a good start to our morning when we got to view the photo journalism article on http://www.calgary.openfile.ca/ about Braeden.  I just want to take the time to say how proud and thankful I am to Andy Nichols and his report.  It was powerful for me to watch and I'm living this!  Thank you for those of you that could take the time to view it.  I am hearing from more of you about donations and it is so rewarding to me to hear these selfless stories.  Family, friends and strangers alike have come together to donate in Braeden's honour and I've (unfortunately) have lost count!  Keep it up people, I spend every waking day in that hospital and Braeden is only one small child in a huge ocean of children there.

So onto the face slapping:

We had our multi-disciplinary meeting today which turned out to be a bit of a let down in terms of who we actually got to talk to but it was informative nonetheless.  Basically the good part of the day is that we are NOT going to surgery just yet (yay).  Braeden is thriving and growing on his continuous feeds and that is the main goal here.  He is able to maintain his airway on his high flow 5 litres of oxygen and can stay at 30% for the most part of his day (we breathe 21%, that is 'room air').  The only real issues we are still having are when the little turkey gets mad and holds his breath...not even more flow can fix that little quirk!  We got to get a good rundown from the Repiratory Docs and I think I got all of my questions answered in terms of his care.  I spent the entire day at the hospital today and had Braeden on his back to change him a couple of times and then had a little play time afterwards and he was sat-ing fine (maintaining his oxygen). 

His jaw seems to be growing because there are positions now that he can be in that he couldn't before, he would have occluded his airway and crashed before.  Of course there is also the opposite too, there are now positions that were "safe" that he now occludes slightly in.  It wouldn't be Braeden without some 'fun' thrown in.  Dr. Frank, the Plastic Surgeon, is happy with the decision to wait as well but he is really unable to predict how B's jaw will grow.  He did tell me that jaw reconstruction is a possibility if it comes down to it but that is way in the future.  I did ask about where he sat on B's condition (mandible size) whether he was viewing it as moderate or severe still and he actually said he'd be leaning more towards the moderate side now since he is thriving.  Yay.

The harsh part of all of this not doing the surgery is that we are in a waiting mode (still).  The Specialists are looking to let Braeden grow over the next three months and then we can go from there in terms of revisiting surgery options.  Why is that harsh?  That my friends means a bare minimum of three more months in hospital, most likely 6 more.  That is my slap-in-the-face reality that I was talking about.  Mike and I are already feeling stretched now and we've had the help of my Mom for the majority of the past 14 weeks.  It is a daily struggle to live two lives but it is what it is, we'll just have to keep on going, one day at a time.  There isn't a set-up to take home babies on high flow oxygen just yet, we are five years or so too early for that.  He could however go home on an NP tube (ha ha) but that's not really an option now is it?

I am happy with the decision, and not at all surprised as we've been seeing Braeden grow over the past few weeks.  I'm (we) are just trying to wrap our heads around the fact that he won't be home anytime soon.  The other big decision of the day is that B will be moving on up to the second floor in the next few days.  I don't fear the Unit 2 move like I did two weeks ago when we left the NICU but it will be a big change.  They do have what is called the 'gold' area up there that is kids with respiratory issues so they are watched more closely.  I do still have horrible thoughts of him screaming (still silently) his head off and no one knowing he is.  That again plays to the 'I can't be in more than one place at once' problem I've been having!  It's not that I doubt the nurses, I really don't, it's just that I know that they too can't be in more than one place at a time.  I need to focus on the positive, we will be out of Intensive Care for the first time in almost 15 weeks (not including my time in there before he was born). 

Braeden's Bunny that sleeps outside his window

I find it so hard to explain to people when they ask if he is home yet or not.  There is nothing about Braeden that is easy to explain.  It is hard to find the words to convey his condition(s) and we really have no prognosis at this point to go on either.  If I start to go into any of B's conditions then people seemingly get uncomfortable, they don't want to know that a baby can still be so sick.  I think people want to just think that everything will be okay.  Don't get me wrong, I would love to think that everything will be okay but I have to be honest here, there are still days that I'm not certain he'll make it to his first birthday let alone come home.  Hmm, I started to go back and delete that last line but it is the truth, as painful as it is to hear.  I know that that is one of the main feedbacks I've gotten from those of you reading this is my honesty. 

I think I sometimes feel the need to shelter others from the grief and intense worry that we feel at times (always worry), with Braeden but it's not been an easy journey and it really isn't being close to opening another chapter yet (like being at home).  Rylan opened the front door the other day as I was leaving to go to see Braeden and he said, "Mom, wouldn't it be so great to bring Braeden home some day, like tomorrow?".  Oh, my aching heart, how it would be so great. 

It is so easy to get sucked into the sadness of it all but then Braeden buries his head in my chest and it all releases.  He might be our centre of stress in all of this but he is also our light.  I see Mike's face when he is holding him and I know how my body and heart feel when it is me.  It really is the only time that I (we?) feel somewhat relaxed is when he is in our arms.

I've been thinking a lot about the kids and their relationships over the past week or so.  My Mom is concerned about Rylan and the role he'll have to play by being in between two 'special needs' brothers.  I'm thinking that if I raise a boy into a man who is compassionate and empathetic (way before his time) that I am doing something right.  We sometimes stress and are concerned that Rylie will feel responsible for his brothers and possibly resent it but then he does things like not being able to go into the basement at night unless he has his 'big brother' T with him.  How do you raise kids, typical or otherwise, to not resent the positiong of their birth in some way?  I don't think that is really possible.  I speak a great deal about Torin and all of his accomplishments that he's made since his diagnosis and of course all of the craziness of Braeden but it is Rylan that keeps me on my toes the most.  He is so much like his Mom that there are days that I wish I could snap it out of him so that he would be more like his Dad.  Rylan is such a cool kid, he really is the source of so much of my laughter and I guess it really is our jobs as parents to screw em all up anyhow isn't it?

OpenFile

http://calgary.openfile.ca/calgary/text/bloodfile-baby-braeden-story-blood-recipient


Please check this out, Andy did an amazing job!

Perfection

Okay, I figured after yesterday's post I HAD to post about today.

I had the most WONDERFULLY AMAZING visit with my littlest man today!  He was already awake in his crib when I got there and so we had a little play.  He was able to track a toy for a bit as well as take a good look at his mobile.  They might seem like small things but for a child with a brain injury these are really HUGE!  To see him act like a baby even in slight ways are exciting!

Grandma

I let Mom hold him first as she's not had a cuddle for a few days and he just gazed out the window at the sunny day for the whole time.  He took his soother (another huge accomplishment is getting him to suck) and pretty much had a good oral workout for the entire hold.  He got a bit fussy so Mom passed him off to me and I completely expected him to pass out as he'd already been awake for an hour or so at this point.  He was in a very playful mood instead and I was able to get some response out of him by nibbling on his cheeks and finger tips.  Keep in mind that he's not able to respond like a 'typical' baby would with giggles and such but his face did light up at the sensations and he had my Mom and I laughing and laughing.  To see a response just makes you want to get it more and more.  You could see the light in his eyes and a slight smile on his face that he was enjoying it.  He kept reaching up the few inches to my mouth (reaching is huge) to have more nibbles and zerberts.  SIGH, in a good way, a happy and contented Mommy sigh.  Some days are just better than others, that is true with all of us, but it is so special when you can have a day of several kinds of wonderful all in two hours.

Michael and I went back up tonight but he was fast asleep on his tummy with his nose buried in the mattress (his favourite position, thank goodness for nasal prongs).  I put the side of the crib down and put my face next to his (MY favourite position!) and whispered in his ear.  He was in such a deep sleep but he raised his head up twice (and flopped it right back down into the mattress) so I know he knew I was there.  After the week we had, I am so very thankful for days like today. 

Little baby steps and little baby dreams = Perfection

P.S. I passed on his kisses for you! ;)

Cease and De-CYST Already!

This is going to be a long one, this is what happens when I don't write for an entire week!  It's obviously been too long since I've posted as my phone is ringing! 

You might want a snack break in the middle...

Snuggle with Auntie Lorna

It has been a pretty crappy week so I've not had much energy to check email let alone explore any thoughts or feelings.  My week started off with a pretty mundane Monday, well maybe not.  Monday was a bit of a shocker when I arrived to see him.  As I walked into his room (room 17), there was a crowd of staff in there and a wailing child.  It took me a moment to process that it wasn't my child in the crib!  What were my clues?  First off the child was waaay too big and secondly Braeden still doesn't cry! I stepped out of the very busy room and stood shell shocked in the hallway for a moment.  A nurse saw me and asked if I was ok and I replied that I've lost my son (duh!).  I was directed down the hall to room 13 where I saw my sweet boy in his sweet crib!  WTH, they just moved him without ANY notice to his parents?  What, is it 'figure out where we moved your kid day'???  Not cool.  The good thing (and reason for the move) is his new room has a nice big window.  It is nice that he'll still have his days and nights to follow and will get some access to natural light and sunshine.  I left a happy baby in his swing and when I returned Wednesday he was still in it!  Now, don't get me wrong, they did take him out and assess him but he essentially spent 24 hrs there.  the other thing that has now changed as well is he is on a continual 24 hr feed.  They feel that some of his fussiness is due to acid reflux and have started him back on a reflux med and changed to continual feeds.

Tuesday was a teary day and for some reason I can't quite remember why.  I guess it could have something to do with the fact that I feel as though these doctors do NOT like to listen to the parents.  The NICU's policy is that 'parents know best' and you'll often hear the nurses saying that where as in the PICU the Dr's seem to rule all.  My issue (and could be why I am not making friends with the new Dr's) is that I question things.  One of his new Dr's (they can change every two days there as opposed to every 14 in the NICU) decided he should be weaned off his Chloral Hydrate and just started taking him off it.  The Chloral was issued to him in the NICU to keep him on an even keel (a mild sedative) to keep his sats up while we waited patiently for the Plastics Dr to return so we could decide our next move.  Now don't get me wrong, it's not as though I want to drug my kid, in fact less is more in my opinion but I have seen first hand the benefits of the chloral.  With the drug he is a bit more subdued but he also isn't having these huge periods of upset that last 1/2 hr where he is inconsolable.  It is very common for children with brain injuries (stroke) to be irritable at times and Braeden certainly has his times.  NOW, I know it is normal for babies to get irritable, I have had two others, but their lives didn't depend on oxygen 24/7 and being able to sustain themselves when they got mad. 

Cuddles with Grandma Hurray

Back to the story, my day started with my questioning the Dr during rounds (they don't like that as much here) about taking him off the drug.  Of course I should also mention that I had to correct the Fellow Dr more than once during her 'run down' of Braeden (read his damn chart and makes notes, it helps!!!), so I was already up in arms.  I asked her (the Paediatric Intensitivetist, main Doc), why they were messing with it and she noted that it is a short term drug and that he'd been on it too long already.  (Insert the fact that she didn't realize he'd only been on it 2 weeks...did I mention they should read the FILE?)  I got them to agree to give him a dose every 6 hrs (as per what it was with the NICU) but their plan was to wean him a bit each day...fine.  The Dr also mentioned that now was the time to start thinking about transfering him up to Unit 2, that he really didn't need to be in the PICU anymore.  Um, you just got him!  It was shortly after rounds that I was fighting back tears of frustration when Lorna showed up (thank you Lorn) and got me to focus (and vent).  I'd love to say the rest of the day went smoothly...HA. 

Braeden has found out that he LOVES his swing (thank you Sumyu!), so I was going to put him in it since he was fussy.  His nurse did a quick assessment first and when I picked him up I noticed the side of his face was wet.  I mentioned it to his nurse and she double checked his feed line and that was fine so I rocked him a bit and she left.  I placed him in the swing and noticed that he had some fluid coming out his nose so I called her back in and she checked the feeding line again (it is fed through his nose into his tummy) and even pulled some fluid out and check the ph.  It was fine, showed that it had stomach acid in it.  She then suctioned him out (I think more to appease me, the pain Mother).  He didn't have much to suck out so again she left.  I turn around to look at him and this POOR kid has fluid shooting 4 INCHES OUT OF HIS NOSE!  He was soaked!!  I ran out to get a nurse, any damn nurse will do thanks and come back in and it did it again!  Needless to say Mr.B was none to happy with it all.  We realized it was water and it was coming through his nasal prongs (for oxygen).  The nurse called the RT (respiratory) and this young thing comes in, we tell her what has happened and she walked up and shook the humidity tube, thus shooting yet ANOTHER gush of water 4 inches out of his nose. "OH, it's not supposed to do that!"  YOU THINK?!  Braeden was beside himself at this point, I think I would have been too.  I picked up the poor kid and tried to settle him down.  I tried for 10 mins to calm him down and he was just wailing (in his 'I make no noise' wail).  I asked the nurse to see if we could please give him something like Medazalam to calm him and she checked and replied that he had nothing in his file that she could give.  She asked if I wanted the Dr and I said yes.  Another 5 mins goes by and by this time Braeden has wailed himself out and crashes in my arms in big heaving sighs. 

In walks the Fellow (remember the one I had to correct several times?) she points out to me (the stupid parent) after noticing my sleeping child that "We don't just medicate our babies here for no reason, and going back to our earlier conversation, we believe at the PICU that less is more when it comes to medications for the children here and further more, Medazalam is not a drug I would administer for something like this".  OMG, how much trouble could I get in for hitting a Dr?  My Mom and Ry were in the room with me at this point too and I thought my MOM would hit her!  Now I do realize (as much as I hate to admit it) I am judging all of these conversations based on my emotional roller coaster but I swear at the time it really is as bad as I make it out to be (in my head perhaps).  Sigh.  We finally get all settled and guess what?  In walked Ultrasound to look at his kidneys!  I was more than a little hesitant to let them anywhere near him but was willing to let them try because they told me I could tell them to stop the test at anytime if I felt he was needing it.  The test actually went pretty well all things considered.  Braeden got to lay on his tummy on a warm blanket and he fought a bit but I think he just figured it wasn't a battle worth putting anymore wasted energy into.  I could see them marking spots on the screen and I asked (feeling alarmed) if they were stones but they both said 'no' and went back to the scan so I put it out of my mind.

Wednesday I was down for the count with a migraine...any idea why???  I literally slept the day away, tried my migraine meds four times with no avail and started chewing percocets (gak, I know).  Needless to say I didn't make it to the hospital (thank you Lorna for filling in) and by the time Mike went up that night he was fast asleep.

Thursday morning I was still not able to see straight so I got a bit more drugged up and went back to bed after getting the kids off to school.  I dragged myself up to the hospital in the afternoon for a bit because I had to see my little man.  I got there and he was fussy so I picked him up and we both let out a huge sigh and collapsed into the chair.  I asked for an update on the ultrasound from Tuesday from the nurse but she mentioned that I had to have a Dr go over it with me (that's never good).  I only had a 1/2 hour left before I had to leave to go get T and with five minutes to go a (new one) Dr comes bustling in.  She was apologizing that Thursdays are bad days to talk to Dr's as their residents aren't there (which means that they have to do their own work, oooh, I'm nasty) and she is so very busy.  I asked what the results of the Ultrasound were and she looks at me and says (and I quote), "Basically the kidneys are not normal".  Ummm, what does that mean exactly?  She goes on to tell me that his ureters are abnormally large and that could be causing him some reflux but also that he has multiple cysts in both kidneys.  WHAT?  She went on to say that the cysts could be from 'polycystic kidney disease' to which I replied, "oh, I have polycystic ovaries..." and this (oh so wonderful) Dr replies to me in a very condescending tone, "They are not related".  Not only did she cut me off but she was just plain rude!  So either the cysts are from PCKD (which is genetic) or they could be cysts that just grow with the kidney and cause issues later.  My big question, wait for it..."Why did they just show up?"  My favourite answer that I have gotten SO many times over the past three months, "I don't know".  Again, Sigh.

Now Thursday night was a better experience (yay, she'll stop complaining here!).  We had Andy Nichols come to the house and then up to meet Braeden and do a photo journal/interview about Mr.B and Blood Services.  He is doing a freelance piece for OpenFile (online magazine) and they just so happen to be profiling blood donations in Canada and asked to do a piece on Braeden (and his 35 transfusions).  Andy did well being as he got accosted here first by T and Ry and had to learn about phones, elevators, fans, microwaves and VTech video games!  Pretty funny!  The boys (my super shy kids, not) thought he (Andy) was great.  When we went up to see Braeden he was asleep when we got there and Andy got some (I am assuming) great shots of Mike holding Braeden.  Braeden, knowing some how it was time to perform, woke up and was in a wonderful, photogenic mood.  I am very excited to see Andy's final piece, I am sure to cry.  We came back here for the interview and if he uses it, it will be me yattering on and on and Mike sitting beside me nodding his head...sound like us?!  All in all it was a great experience and one day I can show Braeden his photos and say they were taken by the 'Great Andy Nichols' as I am sure he'll go very far in his career. 

I guess now would be a good time to mention that my Mom didn't go home today as planned, she cancelled her flight.  She cancelled it due to my migraine (which makes me feel horribly guilty not that that was her purpose), so I'm not sure what her itinerary is now but we are happy to have her awhile longer.

Friday, (phew, I'm tired typing this so you might need a break from reading it).  Ah Friday, the most frustrating day of my week thus far.  I am getting mad just thinking about today so it might come across a bit snotty as I'm still riled up.  I got to the hospital before rounds this morning and Braeden woke up as I came into his room.  I changed him and pulled him in for a cuddle to wait for the rounds to take place (I don't trust the decisions being made now after the Chloral medication incident).  They finally got to our room and the Dr (the snot from yesterday) asked me if I wanted to come out and when she saw that B was settled in my arms she told me not to bother, 'someone' would come in and talk to me after rounds.  I relented as B was a bit unsettled and I thought if I put him down he'd be more than unimpressed.  I listened in the best that I could when his nurse peeked in and asked if I wanted to know what the new plans were.  I figured that 'yes' I certainly did so I put him down and went to the door.  As I came to the door the Dr informed me that they were just discussing that they were going to do a nasal pharyngeal tube on Braeden right away. 

[Ok, pause here.  Remember back to when they tried this in the NICU, it was NOT a good experience at ALL.  Braeden HATED it.  This is the tube that goes through the nose and down the back of the throat, pulling the tongue forward and therefore (hypothetically) opening an airway for him.] 

I immediately objected stating that it was not well received in the NICU when they tried it and that the whole process was 'horrible'.  The Dr (ooooh, I don't like her), turns to me and says (again in her snooty voice), "What exactly was 'horrible' about it?  What does horrible mean?"  UGH!  I explained how he hated it, tried constantly to remove it, it created constant need for suction due to the excess mucus that the nose/throat form (because it is a foreign body) and he was miserable.  Well!  'They' do it differently in the PICU and 'they' split the tubing.  Yeah, they tried that at the NICU too, it still didn't work.  So this woman turns to me and says, "He can't go HOME on high flow oxygen, he CAN go home on an np tube".  I can't believe she pulled that with me, I am not an idiot.  He is no where near ready to go home and for her to try to put that carrot out there was just cruel in my mind!  Even if his airway gets open, we still have a few other issues to deal with.  Then she tells me that at least it is far better than a trach.  GAK!  FINE!  I told her to go ahead with it and she suggested that I go get myself a 'cup of tea' while they did it.  I (unfortunately?) had to go anyhow to pick Ry up from kindergarten and was actually glad that I didn't have to witness it.  The RT saw how stressed I was and assured me she would be as gentle and quick as she could.  I left and proceeded to cry the entire way to go to get Rylie.  Sometimes you just need to go with your Mom gut and not let a Dr push you around!!!  [Nice, happy part coming up]  I got home and Lorna and Lisa stopped by for a visit and an offer to babysit Ry so I could go back to the hospital and my Mom could have some downtime.  We had a nice visit (thanks again for the yummy food!), and Mom took me back up to the hospital.  I was gone just over three hours by the time I walked back into Braeden's room and when I got there there were four of them around his bed tending to him and the "Dr" at the end of his bed.  She (the Dr) announced to me that they pulled the tube out as it didn't work....

DEEP

BREATH

HERE
.
...she was so glad they tried it but it just didn't work for him and in fact it made his breathing worse.

Funny how I was right!!!!!!!!

The Dr left and I asked his nurse what had happened and she told me it was horrible.  He cried and fought it for the full three hours and was inconsolable.  They tried everything to calm him and nothing worked.  He produced so much mucus (sorry for the faint of heart) that it was shooting out of his nose.  The nurse told me she got the head nurse, then the resident, then the 'Dr' Herself and the Dr told her to just take it out (cause they surely wouldn't want to drug him to calm him down).  They made it at least over TWO days at the NICU!  So basically they tortured an already sick, poked and prodded baby for NOTHING.  Well, I guess not nothing....sarcasm alert....now they KNOW it won't work.  I really wanted to cold cock her, I swear.  I am so glad this Dr is only on a two day rotation with us because I wouldn't be a nice Mommy to her tomorrow at all.

The good news is that Braeden was in a wonderful mood afterwards and he had a wonderful little play time with me.  I did get a chance to talk to the Nephrologist about the kidneys as well.  Basically he told me that we shouldn't be too concerned with the cysts at this point as his kidney function is good.  I also asked a tonne of questions and he drew all kinds of pictures for me explaining everything (and he also mentioned that the Dr that reviewed it with me was certainly NOT a Nephrologist! Ha!).  The kidneys are a concern, certainly but he said we've got enough stuff to lose sleep over for now and as long as the kidney function stays strong then we'll not worry about them for another few months.  Okay, this Dr I can listen to.  It so happened that Neurology came in for a chat too (you can tell it is Friday) and she told me that they are going to slowly wean him off the Kepra (the anti-seizure drug) to see how he does.  She explained that they will do it very slowly as to not cause any 'withdrawl seizures' over a period of two weeks.  The Ped Dr's wanted him switched back to Phenol Barb and off the Kepra but she (Neuro) wants to eventually have him off the drugs altogether (which was the original plan), it is just happening a bit sooner than we planned initially.  I am totally fine with this but did express my serious concern about having him taken off the Chloral (sedative) at the same time because if he gets fussier or moodier we won't know why.  She agreed with me but told me that wouldn't/couldn't be her decision that it would be up to the Peds Dr.  Great.  I have another fight on my hands, of this I'm sure.

I did end my hospital day on a positive note though, I got to stand 10 feet from Paul Brandt as he sang "Alberta Bound" live for the radio in the food court.  It was great, made my teary again!  He was there as a part of the radioathon that they ran for the last three days.  I set up my $20/mth donation, did you?  I listened to the radio to and from the hospital and my Mom asked why on earth I was listening to it (the heart wrenching stories told by other parents) but I explained that as hard as it was to hear, (especially the kids that didn't survive), it made me stronger knowing that those parents got through their struggles.  They survived even if their kids suffered or didn't survive themselves.  Huge.  Scary.  But realistic. 

I came home the other day and started crossing off organ systems and such that Braeden has issues with.  Let's start at the head:

• Strokes
• Colobama (eye)
• Paralyzed left vocal cords
• Small mandible (jaw)
• High Peaked Palate
• Chronic Lung Disease
• Heart Coarctation
• Reflux
• Necrosis (Intestines)
• Kidneys (Cysts and Enlarged)
• Liver (Occlusion)
• Not to forget the Clots and the Sepsis and Meningitis that he has already endured

The really sad part is I'm certain I'm missing putting down something aside from the fact that he was also 8 weeks premature.  I am waving my white flag here people.  I won't say it can't get worse, I certainly know from experience that it can but seriously, we are getting a little worn out here.

I guess it's not every day you get a close up picture of Paul Brandt though!