Both Janaya and I were born in Edmonton, Alberta and had always lived in the area of northern Edmonton until we packed up and headed out to Beaumont, Alberta on March 1st of 2017.
Janaya was born November 17th of 2009 at the Royal Alexandra Hospital weighing 7lbs, 12oz. I had a rough labor, 23.5 hours of mostly hard contractions lasting for 2 minutes with only 30 second breaks and, after 18 hours, I caved and got an epidural which allowed me to sleep a bit and regain some strength. I needed to be induced as things weren’t progressing very quickly, however eventually Janaya was finally ready to come into the world at 2:03pm. Upon arrival, she was found to be hypoxic (meaning she wasn’t breathing) due to being in the birth canal too long and this caused a lung infection that needed immediate attention. It took them several minutes to revive her, and once they did I had a brief moment to hold her before they whisked her off to the NICU.
Arriving in the NICU, Janaya was slightly jaundiced and wasn’t feeding so they needed to keep her in an incubator and she had a feeding tube through her nose. It was 2 days before I was able to hold her again. From there, I was able to hold her a few times a day for a couple weeks until her jaundice went away. Her father and I stayed at the hospital in a private parent room during this time so we could be close, and this allowed me to be by her side more often. She was already such a well behaved little girl, didn’t make much of a fuss and was already so beautiful…
A week before Christmas, we were released from hospital and finally able to come home. She had such a personality already and many, many facial expressions. She slept well. didn’t fuss much and, due to unfortunate nursing luck, took well to a bottle and formula after about a month of nursing. I watched her sleep, enjoyed the slight smiles she already made when she slept on my chest and her little grunts that babies make.
It was a really nice next few months of enjoying this precious little girl, watching her learn and how curious she was. She was almost 2 months old when she started trying to lift up her head and look around. She was such a delight. Our peace at home, however, was soon interrupted…
February 8th of 2010 I was home alone with Janaya as per a usual Monday evening. Janayas dad was at work and her uncle had just left to hang out with some friends. Janaya was down for a nap, and seemed to be taking longer than usual… By this time, she was waking up for dinner. This prompted to so make frequent visits to her crib before finally picking her up to wake her from sleep so she could feed, only to find she was already awake and was just laying there quietly. That is when I noticed something weird…
At first, it was just her eyes. Twitchy, jittery, wasn’t focusing… She seemed limp. That was when her hands started twitching… Then her jaw started ticking… And that is when panic set in. What does one do when they panic? Call their mother. As soon as she answers and I tell her what my suspicions are, she tells me to hang up the phone immediately and call 911. The operator confirmed my suspicions… My baby girl was having a seizure at just under 3 months of age.
Trying to stay calm (and failing), the operator tells me to follow steps and keep her updated on Janayas condition. I couldn’t tell you how long she seized for.. Minutes. Seemed like hours. When the paramedics showed up, they checked her sugar levels and got her on a stretcher to bring her down.
That was her blood sugar reading. Normal levels read between 4 and 8 and anything below a 3 is dangerous.. So 1 is definitely not good. She was rushed to the University Hospital where we were admitted and stayed for the next several weeks, awaiting the first hard diagnosis of this little girls life..
Janaya was (and still is) what doctors and nurses called a ‘difficult poke’. She was strong and has very tricky veins which led to several pokes and eventually 2 IVs to the head (hence the shaved spots). It took them a while to figure out what was wrong. The knee-jerk-reaction was diabetes since my dad had type 1, however her insulin levels checked out fine. Test after test after test went through, everything came back fine. Until a doctor came in asking to do an exploratory MRI on her brain, and this is where they found that Janayas pituitary gland was quite small.
The pituitary gland is a small pea-sized gland that ‘hangs’ from the brain. It is the ‘Master Gland’ of the body and its main function is to ‘direct’ hormones to where they need to go. See the below explanation provided by Greys Anatomy season 12, episode 2 called ‘Walking Tall’:
- “The body has approximately 11 organ systems all doing different things at the same time. In order to keep us functioning or, well alive, they need one voice, a leader, a master and in our brains, that job belongs to the pituitary gland. It senses the body’s needs before they even arise, working non-stop. The pituitary gland communicates with all the other glands, telling them when to produce the vital hormones we need to function. It keeps everything running smoothly, in perfect order. There’s no denying it, it has the toughest job in the place.”
- “Without a strong leader the whole machine’s out of whack. And it’s pretty simple, if the brain’s working the body will listen. Your limbs will hold you up, you’re lungs want to breathe, you’re heart wants to beat but none of them are any good without the brain. The brain keeps everything all together. Like a boss.”
Janaya was then diagnosed with PanHypopituitarism, meaning she was born with is. Hypopituitarism is a common side affect of many things, such as tumors, radiation, head injuries and strokes, however it is rarely something one is born with. After further testing, Janaya was found to be deficient in adrenocorticotropic hormone (ACTH), levothyroxine and later, somatropin. ACTH relates to cortisol levels and the adrenal glands, levothyroxine relates to the thyroid and somatropin for growth hormone. The treatment is hormone replacements for life and being followed closely for life by an Endocrinologist. Side effects were told to be mental and physical underdevelopment.
From experience with this condition, they knew to get an Ophthalmologist involved. After being told my daughter was on hormone replacements and may grow up to have learning disabilities, I was then informed my daughter was legally blind. She was found to also have Optic Nerve Hypoplasia, meaning that her optic nerves are a fraction of the size they should be causing images to be incompletely transmitted to the brain. Depth perception would also likely be a problem for her. It wasn’t until later in her life when she could explain that she is a miracle with her vision…
We spent a few weeks in the hospital getting all the tests done, checking which hormones needing replacing and getting all set up with the different doctors. We were finally able to go home mid march. We were seen every couple weeks by the Endocrinologist for a while and the Ophthalmologist every 6 months to keep up with Janayas growth. She wasn’t gaining weight or growing very fast, only around the 20-25th percentile for both, due to not taking her growth hormone until she was 1.5 years old. Even then, the Hypopituitarism usually leads to stunted growth of some sort. Mentally we started to see how advanced she actually was!
Janaya met her milestones very quickly. She was always very bright and picked up on things so quickly! Her doctors were quite happy with her development. Her first word was ‘bubble’ (more like bubbo) and shortly after, dada and mama. She loved people, she was always smiling and ALWAYS blowing bubbles and babbling (as soon in many photos). Did I mention she had the most beautiful blue eyes until she started growth hormone?
It was about a week after her 1st birthday when her 2nd seizure came. I was starting at my cousins place at the time when I noticed the same jitters I seen just 7 months prior. Eyes twitchier, hands convulsing… Dialed 911 immediately and sure enough her sugar levels were
As mentioned before, this number is quite low and even lower than her first seizure. She had just recently had a huge growth spurt and her Hydrocortisone dose wasn’t high enough to keep up with it, causing the decreased sugar levels. Another trip to the hospital and some blood work later, off home we went. This was (thankfully) that last seizure she ever had.
That December was when the clock-work-like Pheumonia/Bronchitis started. She was also diagnosed with asthma that year (2010), which wasn’t shocking as it runs in her dads side. The first 2 weeks of December for 5 years straight we were admitted into the hospital for either pneumonia or bronchitis, once it was both, and at that point we had known some of the nurses by name. All the nurses and doctors at the Stollery have been, and always are, absolutely amazing.
Things calmed down after the storm of her first year. Aside from December, she didn’t have any other emergency visits (or at least not any super crazy ones) and I was able to actually enjoy her and watch her grow, learning everything she could. Her curiosity was unparalleled and she was just the smartest, sweetest girl. Her favorite people were mom, grandma (moms side) and dad.
She started crawling around 6 months and was walking around 16 months, and once she started you couldn’t stop her. Same with her speech. As soon as she figured out how to do something, it was like the knowledge express train and she picked everything up so fast! She growled A LOT. Excited? Growl. Mad? Growl. Sleepy? Sleepy growl. While she growled she did this thing were she needed to stand up, hold on to something and jump up and down on her toes which made it absolutely hilarious. Let’s see if I can find a mid action shot…
She didn’t cry often, so when she did I just HAAAAD to take a picture:
Because otherwise, she just smiled and laughed ALL THE TIME!
I did a pictorial with the Edmonton Journal during my final year of high school, the link for that is: (some of the pictures don’t work)
In 2014 is when Jayte came into our lives ♥ The rest is history!
Thank you guys for reading about us, and let me know if you have any other questions 🙂
Keep scrolling for more photos, because I just can’t choose my favorites ♥