Saturday, 28 January 2012

A Grin for Me!

I have to start by saying 'WOW', the blog has been viewed over 10,000 times!  Thank you to all of you that are reading this and supporting our journey.  Not bad with only 8 members! ;)

I know I've not updated for a few days because no updates means my phone starts ringing!  Not that this is a bad thing but I'm also not the easiest person to reach these days. 

We are excited about our first Blood Drive tomorrow at 9am.  We booked 10 spots and I am so happy and proud to say they are all filled!  Thank you again to Lorna for all of her hard work and for thinking of this to begin with!  I want to say a big thank you to my favourite oldest sister for donating in Victoria last weekend!  I am so touched by those of you willing to donate and just from all the support that people are offering.

We've had an interesting few days.  Braeden is not going for the mandibular surgery just yet that was the conclusion of the meeting of the 'powers that be'.  I am so impressed and thankful to Trish (one of B's primary nurses) for coming in on her day off to join the meeting therefore giving me more access to info as well.  The Dr's have come to the conclusion that they've not ruled out enough stuff and want more testing done first.  Basically what I think is that they are a little unsure about how B will react to another surgery and are erring on the side of caution therefore giving him time to grow stronger.  One interesting fact is what they saw in the MRI is higher than normal levels of lactate which can signify mitochondrial disease.  The specialist did review Braeden though and her thought is that the test for the mito is too high risk/intrusive being as he is at the lower end of possibly having this disorder (they take a muscle biopsy).  We also found out from the CT scan that Mr. B's jaw is smaller than they anticipated AND he is missing part of his jaw.  Take your finger and trace down from your ear to the bottom of your jaw and that is what is missing.  Which means a bigger surgery essentially.  So more hurry up and wait, which i am actually okay with, he needs to build his strength so that he can survive the surgery. 

We are also in the process of beginning the transfer into the PICU.  They are sending over some of their team members to meet Braeden and get to know his needs.  The head nurse told me it will be sometime in the next two weeks but I think it will happen sooner rather than later.  The biggest problem they will have in the PICU is staffing because they generally have one nurse to two rooms but with B being on the C-PAP he needs constant care.  One thing I have been told as well is when he is transferred over to the PICU that I'll be expected to spend MORE time at the hospital...uh, I have two other kids to raise.  I'm not putting too much credence into this just yet, I need to get my feet wet there first before I start freaking out. 

There doesn't seem to be too much concern around the hematomas in the head, which is a good thing I suppose.  The Neurologist I spoke with today is convinced of a 'syndrome' but can't tell me which one, not so helpful.  I just keep telling everyone he has 'Braeden Syndrome'.  Braeden can move all of his limbs, he just doesn't that much.  When he had a neighbour for a few days that was about to go home, I saw the dramatic difference a 'healthy' baby has over him.  It is funny what you can forget even though I've had two other kids.  Whatever you live becomes your 'normal'.  I do miss our old roommates though, Jaime and Mike, some people you just connect with (and are just more quiet and respectful).

On a happy note, Michael and I had a wonderful visit with our baby B tonight.  He was mostly awake when we arrived and stayed awake until we left.  He did give me a full-out grin today which was so good for my spirit!  He was just content tonight which is saying a lot. 

So basically the result of the meeting is more meetings and more tests.  Mr. B will hopefully get stronger and when they do decide the time is right we'll be a bit more prepared for the undertaking.

I have been trying to decide how much to write about 'me' and I figured if I'm going to be honest about Braeden I need to be honest about me as well.  I had a very rough day Wednesday and wanted/needed to pretty much sleep all day.  I had to force myself to shower and go to the hospital even though I have the desperate need to see Braeden, it is still exhausting.  People ask me all the time how I do it and I don't know, I just put one foot in front of the other because I have too.  It is hard when you have limited sleep and when there are nights that I awake in a panic because I need to know if B is okay.  The truth is that I've dealt with depression on and off my adult life and I surely felt myself slipping on Wednesday.  I am painfully aware of the signs of depression, it is just whether or not I chose to pay attention.  My actual thought Wednesday was 'oh postpartum, here we go'.  I had a decent bout of postpartum after Torin was born but I know there were mitigating circumstances around that.  I had 'baby blues' after Ry but that is all they were, they didn't go as deep as depression.  I haven't had an issue with depression for quite a few years now but with everything that is happening I know I need to keep a close eye on my mental health as well as physical.  Of course Michael is very in tune to me as well which helps.  A good thing about being part of the NICU is that the nurses are trained to watch for it and they can be very helpful.  So I had a rough day, but I've had better days since and I'm feeling like I'm not at the point of needing medication yet but I'm not ruling it out.  By saying it out loud on here I'm also announcing that I am needing to pay attention to my head and the body as you are all my witnesses.  I am not ashamed to say that even though I put on a strong face there are just going to be days where I might need to sleep them away.

Did I mention we are doing the Blood Drive tomorrow?! :)


Anonymous said...

I am sorry I am not able to donate (was selfish and got a new tattoo) but my husband does donate every 56 days and will do so on behalf of you and Braeden next time.
Big hugs

SAM said...

It's truly is amazing how the human body can survive such traumatizing experiences. Not only Braeden but all of you. It's truly amazing to read ... I can only pray for continued strength and wisdom for all involved, Doctors family friends... the ripple of love is huge. Hugs to all. A SMILE how precious!