Welcome to the world Baby Nash!

So after much though I've decided to give this whole blog thing a shot. I'm not sure how much time I'll be able to put into it but will try my best. My reasons for doing so...I know that it's been great to connect with other parents going through a similar journey with Cystic Fibrosis and it's nice to see/read about what they are doing.  It's also great to be able to contact these parents for advice and support. I also thought that it would give our friends and family some insight as to what things we do on a daily basis for Nash to stay healthy and his progress.

I'll start with a little bit about us. My husband P.J. and I live in Calgary, Alberta. We had our first son, Nash, on Halloween this past year. After having a healthy pregnancy Nash was born 15 days early and weighed in at 6 pounds, 12 ounces. For those that know us, you know our birth story was as easy as it comes, being over and done with in 20 minutes! As my husband would say, the "Brown" side of the family has no patience. He was a bit bruised and his nose was a bit crooked as they had to vacuum him out due to a drop in his heart rate.

Just after he was born

We went home with our healthy baby only to learn when he was fifteen days old that he has Cystic Fibrosis. I will never forget that day.  We had been having some issues with Nash's weight gain. After going for a check-up when he was almost two weeks old at our Maternity Clinic I was excited to see that his weight had gone back up to his birth weight. (He had dropped to 6 pounds, 3 ounces) When I got into the dr's office she started talking about how concerned she was with his weight. Being the first appointment that P.J. wasn't able to come to, a lack of sleep etc. I began to cry, thinking it was my fault. Breastfeeding was a challenge and here I was thinking he was doing so well and to hear her be so concerned I just crumbled.  She told me to come back the following week on the Monday (this was Friday) and we would weigh him again. All weekend I felt like he was feeding well and I thought for sure he was gaining. On Monday when I went back  I was optimistic of his weight gain only to learn that he gained...nothing.  Our doctor told me that she was at a complete loss, he was eating, had lots of activity in his diaper and she then decided to refer us to a paediatrician.

Our appointment was booked for Wednesday and before we had a chance to go, on Tuesday I received a voice mail from Children's Hospital. The voice mail said that due to his newborn screening they needed us to bring our son in to do further testing. He left a name and number and when I called back and got the voice mail it sounded, in his thick accent, like he was saying he was the Respirologist on staff. I was so confused and waiting for his phone call back felt like forever.  When he did call back I was upstairs in the bedroom. He was very to the point, asking if I knew anything about Cystic Fibrosis and basically telling me that Nash had it.  He said that they normally wouldn't be calling and telling me this over the phone but that we had no family doctor on file. He told me that we needed to come in and do a sweat test to confirm but when I asked, "Is it more likely, less likely, 50/50?" his response was, "more likely".  I started crying and he put me on speaker phone with himself and one of the nurses from the CF team.  They asked if we would like to come in just to have a conversation that day as they wouldn't be able to do the sweat test until the next.  Luckily P.J. was home as his dad came from Nova Scotia to visit, having just arrived the night before. I got to the top of the stairs and bawling my eyes out, told P.J. what had just happened. We got in the car and left for the hospital, longest 40 minutes ever!  All I can say is that after being as devastated as I was, after going and talking to them that day, I felt much more at ease with the diagnosis.  I had my pity party that day and then decided to just educate myself as much as possible and take one day at a time.

Nash and I at two weeks old