In the beginning

So, our family’s story begins in 2006 (well, much earlier than that – but for the sake of this blog, let’s go with 2006) when we were expecting our first child. I desperately wanted a baby girl with blonde hair and blue eyes. I have almost black hair and brown eyes so I knew it was a long shot but I figured I’d at least put it out into the universe. Anyway – so we went for our 18 week ultrasound and BINGO – it was a girl! YES! But wait.. they found an isolated echogenic intracardiac focus on my beautiful little baby (essentially a calcium spot on her heart) which normally means nothing but may be a soft marker for Down’s Syndrome. The doctors assured me not to worry but, I’m not going to lie, I had a bit of a melt-down on the car ride home wondering if my child was healthy, etc.

We were followed up with more ultrasounds.. still the focus remaining but there were no other indications of problems – good. One day at a visit to my OBGYN, I asked if I could have one last ultrasound to check if there were any changes.. she agreed and I went right away down the hall. So, all excited my husband and I watched the baby on the screen and GOOD NEWS – the focus has disappeared as the doctors had predicted.. YAY! Hmmm.. so why was the technician looking worried and why did she say she had to leave and speak to the doctor.. and why were they taking so long to come back in the room?

The doctor on duty came in and said there was a problem and that it appeared that our baby had enlarged ventricles in her brain. We were to immediately return to our OBGYN’s office for a consultation. We were in shock. My doctor sat us down, said a bunch of stuff I don’t remember except something to the effect of ‘your baby might not live’ (I wish I remember the exact terminology because it was so cold and “medical”) Anyway, so ‘blah blah blah, , any questions?’ Who is able to come up with questions when they’ve just been whacked in the head with a cast iron frying pan? It was easily one of the worst days of my life..

In the interest of keeping this somewhat concise, we ended up being assigned to the high-risk unit at the hospital and having level II ultrasounds every week. As far as we could determine, the level II ultrasound was a targeted ultrasound (examining a specific area) using higher resolution ultrasound (I think this might have been because that hospital unit had better equipment). Her ventricles were measured every time and did not seem to be getting larger or smaller. We suspected that she might have hydrocephalus but the official diagnosis at the time was “stable ventriculomegaly” meaning that the ventricles were dilated but not changing in size.

If the baby had hydrocephalus, it would be imperative that she have a shunt to drain the excess fluid… so we discussed with the neonatologist the possibility of delivering her early. I did an amniocentesis to perform a test for fetal lung maturity – which she failed – so we waited a few more weeks and delivered the baby at 38 weeks gestation via c-section. All hands were on deck for the delivery and our baby was whisked off to the special care nursery where she was placed in an isolette and hooked up to all kinds of machines. She was tiny at just over 5 pounds (I remember having a hard time finding diapers and clothing to fit her – later I ran into some other premie moms and they suggested doll’s clothing  She also had trouble sucking/swallowing so she was on an NG-tube for the first few days and thanks to an AWESOME nurse who worked with us, we were able to nurse and bottle feed in no time.

We were seen by a neurosurgeon at the Children’s Hospital of Eastern Ontario (CHEO) and assessed. He recommended that we get an MRI to help with the diagnosis. We were very nervous about the MRI because that involved putting the baby to sleep with sedation which has inherent risks but we went ahead anyway as we were starting to notice that she wasn’t keeping up with her developmental milestones.

Stay tuned for the next post …. the diagnosis.