Happy First Halloween, Kane! Day and evening costume changes are included. I’m learning that if I use the built-in flash on my camera, Kane smiles! So, these first few “happy snaps” may not be my best technical photos, but they are so damn cute!
We spent the morning at the Stollery Children’s Hospital. Kane (aka Superbaby) had an appointment at the Scoliosis Clinic where his doctor informed us that his spine curve has NOT gotten worse since his x-ray 6 months ago. In fact, his doctor said it’s looking a little better! So we won’t be participating in that particular clinic until 12 months from now.
Following Kane’s appointment, we went to visit Kane’s NICU baby buddy, Maria, and her mom, Karina. Along the way, we ran into Marcel Panas spreading the Halloween spirit around the hospital. Marcel is on NICU FACT (Neonatal Intensive Care Unit Family Advisory Care Team) with me.
The following is a Facebook post written about Maria on October 22nd.
My story begins when I was 24 weeks and was still living in my mom’s belly. Doctors told mom that I had stopped growing in the womb at 24 weeks of gestation, which caused my early arrival. I was born at 27 weeks of gestation (3 months before my estimated date of birth). Doctors filled my parents with fear. They reported that I had several health problems. I was born weighing 540g (1lb 3oz) but the biggest problem at that time was the hydrocephalus, cerebrospinal fluid accumulated in my head making it grow more than my body, I was at risk of actually damaging my brain .
Another problem was the accumulation of air in my tummy, which resolved quickly with a small surgery to allow air to exit. It was very hard for me to gain weight, I was driven crazy by the nutritionists that visited me, all coming from several hospitals giving their best advice.
When I finally weighed one kilogram, the doctors decided to do surgery on my head to put a valve and help to drain accumulated fluid, it began draining 10ml daily. Gradually the amount of fluid drained was decreasing and the sessions became every other day, then every week up to once a month, thank God my little body was achieving the right flow of cerebrospinal fluid to circulate properly. Even though it was a scary surgery without it I would have had to face harder challenges ahead.
When it seemed that I was ready to feed my little lungs alone began to suck my reflux, causing me to aspirate and collecting fluid in my lungs which was preventing me from breathing for myself and taking me to intensive care four times. I was then diagnosed with aspiration pneumonia. Doctors helped me to breathe with the support of mechanical ventilators. I spent long periods in recovery, because my body’s defenses were very weak, and I had been attacked by the viruses and bacteria such as RSV, influenza and other respiratory viruses , that have made me constantly return to the intensive care unit.
Today I suffer from chronic lung disease and pulmonary hypertension. Family and friends say I’m a great miracle of life because despite the odds, I have the help from my parents and friends I’m always happy cheerful and the nurses always comment on me smiling. I am hoping to recover as soon as possible, so that I can play with mommy and daddy. I am now 13 months, and I weigh 5.8 kilos (12 lb 12oz ) , I still have challenges to overcome, I’m still at the hospital waiting for a new surgery to help me to feed better and still my biggest challenge is: Breathing and eating by myself…
Karina told me today that Maria’s next surgery is on November 6th. She is having a G-tube inserted through her abdomen, which will deliver nutrients directly to her stomach. Kane is hoping Maria is out of hospital by November 22nd, so she can come to his birthday party. You can find out more about Maria on her Facebook page.
Just a reminder of where we were a little less than a year ago. These next photos were taken November 29, 2012, before I was informed I would not be allowed to take photos of other babies while Kane was in the NICU (obviously still a bit of a touchy subject!) Maria had been in hospital for 3 months and Kane was just 7 days old.
As a final touch, a few baby buddies popped by this evening to show off!