6 Days

Evan was born on January 26th, 2012 which was 1 week past my due date.  I kept saying that whole week that this kid was going to be my problem child.   Not very funny looking back on it since it turned out to be true in a way.  I was induced that Thursday morning at 7am.  By 11am I had a comfortable epidural.  I started pushing around 3:30 and by 4:26 pm Evan was here.  We were so happy and he was a beautiful baby despite the crazy facial bruising the poor child had.  I spent two nights in the hospital  and we went home a happy little family on Saturday morning.  I was so excited because this time around I had experience under my belt and I knew that the nights would be hard but I had tricks up my sleeve.  What could possibly go wrong?  The biggest worry I had was that he would somehow have the same condition, Pyloric Stenosis,  that Connor had in the first month of life.  It's basically a thickening of the pyloric muscle which causes the baby to throw up all his food and basically starve to death.  Sounds severe but is easily fixed by surgery.  At Evan's first appointment on day 5 of life the pediatirican assured us that it was nearly impossible that we would have two babies who had this condition.  I left feeling good even though he puked right on the exam table.   I felt really good that first week.  Micheal got up with the baby all night every night so I could rest and heal from delivery.  Wednesday was day 6.  Day 6 was the last day that I thought life was perfect and that nothing bad could ever happen to us.  Day 6 was the day that a man called us to tell us that our beautiful, sweet little baby could possibly have a life threatening lung disease.

My mom had Connor for the day.  I was home with Evan and my best friend came over to visit and see the baby for the first time.  Evan slept the entire time she was here.  So when she left I went upstairs to grab some laundry and I heard the phone ring and I let the machine get it.  I heard it was the pediatrician who saw Evan in the hospital and he asked me to call him back.  I knew that was not something that happened with Connor so I was slightly concerned but didn't think too much of it as I dialed the number back.  He answered right away.  What he told me next changed my life forever.  I will never be the same person ever again.   He asked how Evan was and I told him he was perfect.  He said that was great but that he had some test results from the Newborn screening that they do to test for certain incurable genetic diseases.   I knew that wasn't good because they didn't call when I had Connor.  It turns out that Evan had an inconclusive result for Cystic Fibrosis.  Apparently he had a slightly elevated IRT level which causes a red flag.  When the IRT level is above 90 (his was 117) they automatically do a genetic screen for mutations on the CF gene.  It came up that they found one mutation of  DeltaF508.  I would learn later that this is the most common and most severe mutation in the CF population.  I didn't know what to say to this doctor and I could tell he really didn't know what to say back to me although he tried to reassure me that most likely Evan was only a carrier and did his best to quickly explain that a person needs two mutations in order to have the disease and that the State would require us to have further testing done to confirm if he did in fact have the disease.  I couldn't speak.  Michael had walked in the door from work as I was on the phone and saw on the note pad that I had written the words Cystic Fibrosis.  He had a look of concern.  I hung up the phone and crumbled to the floor in hysterics.

I didn't know how to process the information.  It's such a complex disease and for as much is known about it there are no hard and fast rules about it which I would come to learn.  After I explained to Michael as best I could what the doctor told me he immediatly went to the internet which is where we would spend much of the next few days and weeks.   We learned that Evan would probably need to have a Sweat Test done to test the salt content in his sweat.  People with CF have a very high concentration of salt because of their bodies inability to process the proteins correctly.   We learned that the DF508 is the most common mutation and to have 2 of them would be the worst case scenario.  We at least did not have that.  He also does not have any of the more severe mutations.  We learned that no two patients have the same disease even if they have the same mutations.  We learned that the average life span of a person with CF is 35 and it used to be 15.  35?  That is how old Michael is.  This is when I got really nervous.  I didn't know how I could live my life knowing that my baby may not outlive me.  I wanted to throw up.  I wanted to cry out why me?  I just wanted to cry.  And I did.  For days to come I would cry the majority of the day.  It's all I could think about.  It consumed my every thought.  I'm crying right now thinking of those days just a few short months ago.  I don't wish it on my worst enemy.

On Day 7 I called our pediatricians office to see what they had to tell me.  They said that they needed to contact the State to see what we had to do next.  I somehow ended up in their office on Day 8.  I can't remember if Evan was being seen for anything in particular but I ended up seeing Dr. Brogan in the hallway and he was kind enough to take a few minutes out of his day to talk to me about CF and our family history and suggested we get the newborn screen done again and wrote us a script for a sweat test.  I went home and found out that we could just go to the hospital and get it redone at anytime.  I also called to schedule the sweat test.  I found out we had to wait a whole month to get the test done because newborns don't sweat enough right away!  The shortest month of the year was about to be come the longest month of my life.  But little did I know that we would have something else happen that would take our minds off of CF for a while.

Why I Created a Blog...Who Do I Think I Am???

I don't fancy myself a terribly interesting person.  I don't have a significant talent, I don't have an important career, I don't travel a whole lot.  So what could I possibly blog about?  Basically I decided to do this because it's less time consuming than therapy.  I hope that this becomes my therapy for what has become my new existence.  I'll get to that.  I'm not expecting anyone to read this and I'm really just writing this for my own benefit; for my own release.  But maybe one day someone who has to experience what my husband and I have to go through mentally and emotionally since one fateful afternoon in February might find this blog and see that they are not alone because honestly, I feel like we are.  I will write this as if I"m writing to an audience because, well, that just makes more sense. So, what might you ask is the big problem?  Read on....

I have a beautiful family.  A loving husband who works extremely hard and is terribly motivated.  He has gotten a late start career wise in life but is really trying hard to make something of himself even at the ripe old age of 35.  I know I don't give him enough respect for everything he does for us...it's something I am currently trying to work o and focus on.  We have two gorgeous boys.  Connor was born March 2010 and is just amazing.  At the age of two he is a spitfire and incredibly smart and outgoing just like his daddy.  At the same time he is a very nice boy and so polite and loving just like his mommy.   He's my first born and will always hold a special place in my heart.  Evan was born this past January and is the smiliest, sweetest baby I have ever come across.  He is my good sleeper.  I'm sure he is going to be as smart as a whip and just as wonderful as his brother.  He is my second born and my last baby.  He holds the other special place in my heart.  He is my special baby.  He is the reason I write this blog.