Wednesday, 28 December 2011

Going Cautiously Forward...

I should start off by saying I'm not a huge fan of Christmas...gasp, shocking I know!  I find the whole day quite depressing, it is just so much prep, time and energy for such a short time and reward.  Don't get me wrong, I love to see my children's faces light up and love to watch them with there endless energy rip into the gifts carefully chosen for them I just always feel a sense of 'let down' at the end of it all.  However, it was a interesting and special Christmas packed on top of all that this year.

Thomas love

Yup, our kid gets Panasonic Phones for Christmas!

Grandma and Pappa
We had a special Christmas for a few reasons but mostly due to the fact that Grandma (Jean) and Pappa (Wade), Mike's folks came out to spend Christmas with us in Calgary.  It was special for them (I'm assuming here), because it was the first Christmas that they had spent with Torin and Rylan.  Unfortunately their two week stay went by far too fast and they've gone back to wet Vancouver.  We do however have the lovely treat of Auntie Mobee (my sister) here for three nights from Chilliwack!

Christmasy Boy
We all trooped up to the hospital Christmas day to see Squeak but I couldn't let the boys come in due to some lingering coughs (which in the last two days have turned into yucky, hacking ones instead).  His lovely Christmas Eve nurse, Colleen, had put him in his super cute 1st Christmas candy cane jammies.  Well, feet were in but not arms due to the lines, but they were still super cute!  He got a wee bit spoiled rom Santa visiting the NICU that evening as well!  Braeden had a stocking with some stuffies and ornament hung from his IV pole.  The ornament was so thoughtful and thought out by one of the charge nurses, Neila, she wrote 'Braeden's First Christmas' on the front and actually traced his sweet little foot on the back side of it.  How wonderful!  He was also gifted with a new stuffie at the head of his bed and several new handmade knit hats.  On his chair was a knit blanket folded up in a bag.  When I pulled it out of the bag a small booklet fell out and I asked his nurse what it was and she said she didn't know.  I opened the book and started to read the entry on it, and promptly got teary eyed.  Several women got together to knit this blanket and each woman that knit a panel of colour wrote a short note to the baby that would receive it.  They were from Alberta and Saskatchewan and the notes ranged from last November (a year before his birth) to last March.  What a fabulous idea!  I only wish that there was an email or some contact info because I would have loved to say thank you and told them about Braeden and how appreciated their thoughtfulness is.  I would love to do something like this myself although I can't knit, crochet or sew due to a bum tennis elbow!  All of the gifts Braeden received were donated by wonderful, giving people or corporations (thank you Shaw and Calgary Flames).  I saw yet one more box with his name on it and opened it to find a hat, socks, sleeper and a duckie all in soft baby yellow.  Now this gift I suspect was from one of his nurses but they'll never tell!  Possibly the same nurse(s) that left us a stack of Christmas baking on the 23rd??  We were gifted with two great nurses over Christmas as well (as both of his primaries were off), Barb and Colleen.

So Christmas Day was interesting due to the fact that they extubated Braeden that afternoon!  We had talked about it the day before and the resident had said it would be in the next 7-10 days (pretty sure that didn't mean the next day although it fell within the parameters!).  Once they get something in their mind though it gets done it seems.  Braeden had been suffering along with a very large leak in his tube (which means it doesn't sit snugly between the vocal cords and air escapes, hence the nickname Squeak) that was upwards of 75%.  He was basically breathing on his own since the majority of his air being pushed through was escaping anyhow.  I had no objection to the extubation, he'd been on it for far too long but they couldn't extubate earlier due to the severity of the swelling that if he'd had an issue with air they would have had major issue re-intubating.  I wanted to be present for it as I hadn't been when they extubated at Foothills and then upon watching it I changed my mind.  It is an entirely unpleasant experience to watch your child turn blue while gasping for air like a fish out of water.  They place him on high flow nasal prongs right away but it takes a whole lot of getting used to when you've had air forced into your lungs for several weeks up to that point.  He did a pretty great job but was working very hard to take each breath and was fairly agitated by it all, as would anyone gasping for air.  The longer a baby can maintain themselves off the vent the better the chance they have of staying off it and I'm proud to say it has now been three days!  Superstar!  He is breathing much better now and not working nearly so hard.  He still gets quite tired and they need to crank him up again once in awhile but for the most part he is sitting at 30-40% oxygen (normal air is 21%).  It was certainly not easy leaving him that first afternoon though, just knowing how hard he was working for each and every breath.

I should backtrack by saying that Braeden's last MRI that was done on Christmas Eve day was very positive in the fact that it showed NO further stroke activity.  It did show that he was prone to seizures (not a big surprise there, been there done that) but the truly wonderful thing is that the Neuro reported that his brain function came across as more mature than what she would have predicted especially with his small brain size.  Any piece of good news is welcome!

I am extremely hesitant to say this but it would seem and feel as though we have turned a corner (I suppose it might be accurate to assume there are many more corners to follow), as Braeden has started to lose weight, somewhat rapidly.  I was actually able to cup the back of his head when I held him on the 26th!  I was so stunned when Barb handed him to me, he was so tiny again.  He'd lost 526 grams in a 24 hr period (that is over one pound).  He gained back half of that yesterday but it is how this kid seems to roll.  I didn't realize they had given him some 'super' doses of lasiks (diuretic) and they seemed to be working.  I was so happy that he was stable enough to be held after being on the nasal prongs for only one day.  He lay on my chest and at one point I realized it was very quiet.  When I looked down at him I realized he wasn't fighting for his air, he was sleeping so deeply that he was simply breathing.  I knew he could do it!  We had an amazing cuddle for over two hours and we both felt a whole lot better because of it.  It is positively terrifying for me to have feelings of positivity and excitement with Braeden as we've been through SO much in the short seven weeks of his life.  In many ways we sit with bated breath waiting for yet another shoe to drop (how many shoes does one have anyhow??), due to the constantly changing stream of issues he's had.  He is outputting great amounts of urine (thanks to the 'super' lasik) and losing weight and for the first time ever, on his seven week birthday, he opened both of his eyes and checked me out!  Pretty damn good seven week birthday present!  Take a moment and think about that, seven weeks it took to see my child awake and alert, it is simply quite shocking isn't it?  He is slowly having 'awake' periods now and doing baby things like, "hey nurse, my bum is wet and I'm hungry dammit!".  We are cautiously optimistic now about his progress forward, this is a good thing.  They are also in the process of dropping off his Morphine and taking him off the Phenol Barb med (for seizures) while raising his level of Ketamine (other seizure med) with the hopes of losing the 'sleepy' side effects of the Morphine and the Phenol Barb.  They have to take it very slow with the Morphine as he's been on narcotics since birth.

We are still taking life one day at a time (I can't imagine that changing any time soon), but we are feeling as though we might be slowly taking steps forward.  If we can keep going cautiously forward then maybe, just maybe the step backwards (if and when there is one) it might not be quite so drastic this time.  I do have to admit though that I am happily going to leave 2011 behind me, this has been one hell of a year with Braeden being the very dramatic end to it.


Anonymous said...

psst. Some of the ladies who knit on your blanket have seen this post. Families like yours are why we do what we do.

Anonymous said...

Hi! I'm one of the members of the Western Canadian Oddball Blanket Society, but I didn't work on your particular blanket. I'm so glad you liked it - I'm sending lots of love and support. One of my good friends had a baby born at 25 weeks so I've seen the ups and downs first-hand. Wishing you a very strong support network!

Anonymous said...

As the first poster said, families like yours are why we do what we do. In some small way we try to give a little support through the love and comfort knit into every stitch. Keep up the good work Braeden!

Hugs to you and your family!

Lia said...

You are certainly phenominal women! It must ve a wonderful organization if my good friend Colleen Sove is a part of it! It just takes your caring and generosity a further step with the personalization with the notes. Keep up the awesome work ladies, we certainly appreciated it! :)