So February 1 was the anniversary of Day 6. Day 6 was the day that the words Cystic Fibrosis came into our lives and would forever change our landscape. Looking back on those dark days last year I remember thinking that life would never be normal. I was so scared to breathe. I would wake up in the middle of the night to feed Evan and hope that I was waking up from a nightmare...each and every time. Thankfully today I have come to terms with our "grey area" status. I am fine with it for the time being becasue Evan is healthy. I also know that should he start to get CF sick some day that I will be more emotionally equipped to handle it. I know more things and have educated myself on the topic enough that it makes sense now. It's all going to be ok. Took me a year to get here but I'm here and that's all that matters.
Yesterday I took a leap and told some family members of Evan's journey in the last year. I was nervous to upset them especially so because my family has suffered some unfortunate events in the last couple months. Both of my grandparents passed away within a day of each other right befroe Christmas. One expected and one very very unexpected. My aunts mother had cancer related surgery and my dear sister is going through some very tough times in her marriage. Needless to say I didn't want to pile on but thought that even though initally they might feel sad that in reality (given all that is going on) Evan's status isn't that big of a deal right now. After the tears were shed they realized that he is A OK and we moved on. It felt good to let that go. I hated having to hold it in but we didn't want to upset my grandmother, god rest her soul.
The reason I finally disclosed this information is that Michael and I signed up for the Great Strides Walk in Philly in April. So I'm going to be putting a blast on the Facebook and send a group email to friends and family for support and I didn't want to blind side them and THEN have to explain.
As for Evan he is currently with a runny nose and a bad attitude. I can't tell if he's teething, has a cold, whatever. He does have a cough at times and it usually comes after I hear congestion in his chest. Sometimes I want to call the CF clinic at CHOP and cry to someone because I feel like he's been sick for so long and i get myself scared that it's a CF cough. I try to remind myself that the doctor told us to be concerned for a cough that is present with no signs of a cold. He's never going to be able to just be sick. He had his 1 year well visit (oh that's right he turned 1 on jan 26!) last week and the pedi said his lungs sound clear and he didn't sound junky even though it was the height of this particular cold. He weighs 22.8 lbs, and is 30 inches long. His head is 18" in circumference. Pretty much in the 75th percentile and doing well. He still does not eat a whole lot of table foods but we've certainly made improvements in the last month or so in foods he will eat. Sill mostly carbs and fruit cups. We have an appointment at CF clinic on Feb. 22. I'm interested to see what will happen there and I'm dying to know if they will diagnose him with CRMS at that time or if we'll just keep him under evaluation. That's all that's going on with us for now.
Showing posts with label Day 6. Show all posts
Showing posts with label Day 6. Show all posts
Tuesday, February 5, 2013
Saturday, May 19, 2012
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.
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.
Subscribe to:
Posts (Atom)