It's My Life

So we got some 'good' (??) news today, Braeden's left vocal cords aren't completely paralyzed, they did see a wee bit of movement when they scoped him today.  That is good news, it means there is hope that they can come back maybe (I think as this is my interpretation as I've not spoken to the ENT Specialist directly).  He is still very swollen in the neck as well so that most likely has something to do with and the existing clot on the left side of the neck.  Here's hoping he'll be able to scream at me soon enough!  He has his feeds down to the minute it would seem and gets quite annoyed when they are late, how I'm going to be in trouble when it is up to me!  Oh how I look forward to the challenge!

 

The past few days have been a bit of an eye opener for me.  I saw the wonderful, Dr. Birch (OB that cared for me during the pregnancy) for my post-op follow up and he hasn't seen me since just 4 days after delivery.  He knew about Braeden's hydrops and SVT's because he was in charge of keeping me going so that we could keep Mr. B inside but had no idea of our battle for life for the past two months.  When I was filling him in I could see the change in his face and when I got to the end of our very long list he actually sat on the bed because he was stunned.  When a Doctor is stunned that your child is still alive after what he's had to overcome it is a bit of a shock.  I know how much he's overcome and I know just how close we've come to losing him (on more than one occasion) but to hear a Dr as revered as Dr. Birch be surprised that is what hits home.  This kid is a fighter, of that I have no doubt!  The other occasion was this evening when he had a new nurse caring for him and his day nurse was going over his chart with her to fill her in.  She got past the hydrops, SVT's, and surgery and came to the sepsis when the nurse exclaimed "oh my goodness, this poor baby!  He's been through so much!".  When my Mom and I said at the same time, "oh, she's not done yet"!  How do you even begin to explain to someone what he's overcome in 500 words or less? 

 

Looking back on the last 60 days I won't dare question how or why he is alive or bother to look and wonder about the future, I'll just enjoy these moments now.  If you take just one of the things he's had to go through I think most parents would be in for a hard road, it really is quite shocking when you add them all up isn't it?  I suppose the biggest thing for me is that I don't (can't) look at the whole picture, I can only look at the here and now and right here, right now, he is an awesome little guy who loves his Mom, Dad and big brothers and loves to snuggle.  He even got to have a look at 'TV' today when his nurse put a toy in his isolette for him to watch AND got his first Grandma snuggle (sorry Jean! You'll have time soon, promise).

Watching his fishies swim

 

It's been too long since I've listed these so here it goes:

 

Things to be thankful for:

• He is ALIVE (I suppose that is a given but it still needs to be said)
• He is having alert times when he knows you are there
• He knows when he is hungry
• He is no longer needing the heat of the isolette, he is maintaining his own body heat (big step)
• He smiles (although the nurses say it is gas, I say who the hell cares?)
• We have more good days then bad, to the point that I can complain about not being able to breast feed
• My Mom (no need to explain any further for those of you that know her and her alter ego Lois)
• My fabulous boys (all of them) that put up with grumpy, tired, emotional me
• My new little laptop so that I can write and save my sanity for a wee bit longer (thank you again Leslie)
• All of our wonderful supporters (that means you too), the list is FAR too long to thank you all individually but you all know who you are

 

As I am writing this I am realizing that it could be quite a long list if I were to look at each of the wonderfully small things as well.  How fantastic is that?  It feels good to not have to try quite so hard to find the positives these days.

 

Who knew three months ago that a 'happy' day could be a day when you find out your child's vocal cords aren't completely paralyzed?  It might be bizarre to some but hey, it's my life and I'm happy to live it!