Ryder's First 6 Months - Part 1

This is something I have been meaning to do for quite awhile now.  I am hoping to use this blog as a way to keep family and friends that we don't get the chance to see often updated on how things are going.

I guess I should start at the beginning and go from there…

Ryder was a healthy "normal" baby when he was born.  We left the hospital when he was 2.5 days old and went home to begin our new life as a family of four.

On his 5th day of life, I had just arrived at an amazing friend's house to show off my beautiful little guy, when my cell phone rang and our lives seemingly changed forever.   The genetics department at McMaster Hospital called to ask a few questions about how Ryder was doing.  The answers to all of the questions seemed normal…yes, my pregnancy had been normal…no, he had not had any problems during labour/birth...yes, he had been sleeping appropriately for a newborn…no, I was not a vegan/vegetarian during my pregnancy…As the phone call went on I couldn't stop myself from sobbing.  The sweet and concerned way the poor woman on the other end of the phone was asking the questions told me something was really, really wrong.  At the end of the call she told me that they needed to see Ryder at the hospital right away.

We went to the hospital and were seen right away by a metabolic doctor, genetic counsellor, dietician, and social worker.  It was incredibly overwhelming.  They gave us a ton of information and told us that Ryder's newborn screening had tested positive for a very rare genetic condition but that we would have to wait 3 months to get the official results.  They sent us home with another appointment for the following day.

When we returned the next day, it was the same thing again…blood work, urine samples, tons of information, lots of doctors, and lots of waiting.  We waited for several hours to get approval from Health Canada to start Ryder on a special type of B12 injection that is not normally available in Canada.  When our tiny little Ryder was only 5 days old, we were shown how to give him his injections and sent home with warnings about what to watch out for…Was he sleeping "too much"?  Was he waking up to eat?  Spitting up "too much"? Not responding enough?  If any of these things were happening we were told he could be having a metabolic crisis that could cause irreversible damage to his brain and body, and would need to be brought to the ER.

While all of this was going on, we still had very few answers about what was going on with him.  Not once, did anyone tell us "Don't worry, he's going to be fine."  That was probably the worst part of all.  There was no talk of prognosis, and quite frankly I was too afraid to ask.  We also had Ethan at home who still needed lots of attention and love from his very overwhelmed parents.

That weekend we had friends over to celebrate Ryder's arrival (April 14) and Ethan's 2nd birthday (April 15).  We hadn't yet told anyone except our immediate family (and the friend whose house I was at when we got the call from the hospital).  Our amazing friends came over and admired what a good baby Ryder was. He just slept and slept and slept.  After everyone left I cried to Ben that our perfect baby was only sleeping so well because he was so sick.  I can't think of any words to describe that feeling other than heartbreaking and devastating.  We continued on for the next few weeks with lots of appointments, blood work, and daily injections of B12.  We slowly told our closest friends what was going on, and everyone was so supportive.   Ryder seemed to be doing everything he was supposed to and I was feeling positive once again!

Here is our sweet little Ryder at 11 days old:

Photo credit: www.lindseypalmer.ca