Dear Aven-
We just returned from the 66 Drive-In. I was a little reluctant to go because this week we have been faced with extremely hot temps. It actually got up to 105 degrees today and I was worried that you would not handle the temperatures well, even in the evening; however, we went ahead and took the car so we could keep the AC on so you would not get too over-heated. It was important for us to take your older sisters. I have felt that the last two months have been centered around you, as is the case with all newborns, and we wanted to get out and do something that your sisters would enjoy. They were showing Madagascar 3 and Pirates: Band of Misfits.
As I type this, eventhough it is late, I am looking at your father who is feeding you. I had mentioned that I had to cut the last post short because I had to go prepare your enzymes. Well, let me try to catch you up as to why we are giving you enzymes.
The first five days out from your genetic test, which was taken on May 9, 2012, was a little stressful. We had gone to Children's Mercy due to your newborn screening and eventhough two screens came back positive for CF, there was still a part of me which believed that they were simply false positives. What made it stressful was when we went to the clinic we met so many people....nurse practioners, doctors, social workers, dieticians, and nurses. They kept referring to themselves as "Aven's team" and explained how they would be there for our family as we started the CF journey. Your father and I had lots of questions which they did a great job answering; however, as I sat there conversing with the physcians, there was a little voice inside my head that kept saying "why do they keep treating us like our daughter has cystic fibrosis when all we have done is newborn screening which is known for having more false positives than not?" I remember crying once in front of the doctor. They were presenting CF as a life-threatening disease and so when I asked about life expectancy, they were very positive when stating that they are always making strides in the CF community. Years ago a child with CF was not expected to make it past their teen years and now the average life expectancy was 37. That's when I cried. Your father put his arm around me. You see I was currently 37, and I could not imagine you not making it to this same time in your life. Great things happened to me at the age of 37....I had you.
Maybe I was in denial or maybe it was just hope, but after that visit I was able to walk with both feet on the ground and just kept thinking about all the false positive tests I had read about. It wasn't until May 18, 2012 that I really felt like my world had fallen apart.
When I think back about the phone call, I really wish I had not cried in front of your sisters. Dr. Baer from Children's Mercy had called and stated the the results from the genetic tests were in and that "your genes had cystic fibrosis written all over them." I remember trying to hold back tears, but she could tell that I was choking up. My first and only question was "What do we do now?" She went on to explain that there were so many mutations out there, but yours was the most common. You had two depletions of Delta F508 ( which will be referred to as either homozygous DF508 or DDF508). We went ahead and scheduled your next appointment for May 22 and at that time we would sit down with your team and begin our plans for your treatments.
As soon as I hung up the phone I cried out in pain. I remember it feeling like when I had cried over the death of a loved one. An overwheling sense of loss. I just held you in my arms and kept repeating "No, No, No." These were the tears that I wish I hadn't shed in front of your sisters. Your daddy was not home and Arya and Tara came running into the room to see if I was hurt. Once I composed myself, I called your daddy to tell him the 'official' life altering news.
Much love today, tomorrow, and always,
Your Mother - Autumn
Saturday, June 30, 2012
Wednesday, June 27, 2012
A Little Piece of Aven
Dear Aven-
I have wanted to start this blog for quite sometime now, but to be honest, everytime I sat down at the computer I became overwhelmed with emotions and had to walk away. I know this first blog will be rather lengthy, because I will try to get caught up on what has happened over the last two months.
It has been two months and two days since you were born. The pregnancy was like no other. I was never sick with your sisters and they arrived within 72 hours of their due date. You on other hand, made your presence known every morning before I left for work and was ready to get out and meet the world three weeks before your due date.
Your delivery has quite a story as well. I actually had gone into labor on Monday, April 23rd as I was teaching my Advanced Placement Chemistry students. Your father and I actually went to the hospital around 2:00 am on Tuesday, April 24th just to be sent home. They stated that I was definitely in the early stages of labor, but because it was three weeks until your due date, they would not induce me and recommended that I go on home. I remember telling your father around 9:00 pm that we needed to head back to the hospital because the pain was getting worse. Your father felt that once we got to the hospital they would probably just send us on home. I remember him finishing a load of laundry and mopping the kitchen floor before we got your sisters loaded up in the car to take them to Mimi's and Papa's.
We dropped your sisters off around 1:48 a.m. on Wendesday, April 25th and headed to the hosptial. Your sisters were born in the old St. John's Hospital in Joplin, Missouri, but due to the May 22 tornado, that hospital just stood as an empty shell. I was very excited about delivering you in the new, temporary delivery ward that Mercy had created, which was called the Walden Building.
As we drove along the interstate there was time when I really thought we would be naming you Prius or giving you a nickname of I-44. I knew that when we arrived, if we arrived, that they were not going to send us home this time. As soon as we entered the parking lot, you arrived within ten minutes. Neither my OBGYN nor the doctor that was working that evening made it into the delivery room. No drugs, no doctors and in one push, a nurse by the name of Cindy and your father welcomed you into this world.
There you were. Born at 2:38 a.m. on April 25, 2012 and weighing in at 6 lbs. 6 oz. Our perfect little girl. Beautiful in every way. We had several names in mind, including yours, but we were not 100% certain until daddy looked at me and said let's call her Aven. Your middle name on the other hand took about 48 hours to come by. We had thought of Greer, Mckinnley, and Mae, but decided upon Renee because of the mathematician Rene Descartes. ( but don't tell your Aunt April who also has the middle name Renee.)
You were a tiny thing. Wearing preemie outfits and sleeping so innocently. Once given the all clear we left the hospital and headed home. You fit right in to our home and your new surroundings. Your big sisters could not get enough of you and wanted to continuosly hold and kiss you, which I have to admit made me a nervous wreck. You were very easy to soothe and seemed to be doing great. That is why I was so suprised when I received a phone call from the State Health Department as well as your pediatrician's office seven days out informing us that your newborn screening had tested positive for cystic fibrosis and that we needed to have a another blood test immediately. That exact same day of receiving the phone call we were back at the hospital having another blood test ran to check for CF again.
I was definitely surprised, but I also knew that mistakes happen and being a newborn there were bound to be certain levels elevated. I had read a lot of information on the internet about the high number of "false positives" with the CF test and I took comfort in thinking that your screening was indeed a false positive, but when I received the second phone call in regards to the second test also being positive, I knew that this was serious. Most newborns have IRT counts ( protein counts)around 70 - low numbers are good and should continue to decline as you grow. Your first test came back as 246 ng/mL and the second test had jumped to 294 ng/mL. Within 48 hours we had an appointment to go to the CF center located at Children's Mercy Hospital in Kansas City, Mo. I knew that they would be able to do more testing to determine if CF was really an issue. We had scheduled a sweat chloride test as well as DNA genetic testing. Unfortunately you were still too little to have the sweat chloride test performed. They were worried that the electrodes would actually 'burn' the skin and so we decided to wait until you were a little bigger; however, we were able to draw blood and have it sent to the genetics lab. The bad thing is now we had to wait for 7 - 10 days for the results.
* I will try to catch you up in the next blog, but for now I must go. You are stirring in your crib so I must go get your enzymes ready.
Much love today, tomorrow and always,
Your Mother - Autumn
I have wanted to start this blog for quite sometime now, but to be honest, everytime I sat down at the computer I became overwhelmed with emotions and had to walk away. I know this first blog will be rather lengthy, because I will try to get caught up on what has happened over the last two months.
It has been two months and two days since you were born. The pregnancy was like no other. I was never sick with your sisters and they arrived within 72 hours of their due date. You on other hand, made your presence known every morning before I left for work and was ready to get out and meet the world three weeks before your due date.
Your delivery has quite a story as well. I actually had gone into labor on Monday, April 23rd as I was teaching my Advanced Placement Chemistry students. Your father and I actually went to the hospital around 2:00 am on Tuesday, April 24th just to be sent home. They stated that I was definitely in the early stages of labor, but because it was three weeks until your due date, they would not induce me and recommended that I go on home. I remember telling your father around 9:00 pm that we needed to head back to the hospital because the pain was getting worse. Your father felt that once we got to the hospital they would probably just send us on home. I remember him finishing a load of laundry and mopping the kitchen floor before we got your sisters loaded up in the car to take them to Mimi's and Papa's.
We dropped your sisters off around 1:48 a.m. on Wendesday, April 25th and headed to the hosptial. Your sisters were born in the old St. John's Hospital in Joplin, Missouri, but due to the May 22 tornado, that hospital just stood as an empty shell. I was very excited about delivering you in the new, temporary delivery ward that Mercy had created, which was called the Walden Building.
As we drove along the interstate there was time when I really thought we would be naming you Prius or giving you a nickname of I-44. I knew that when we arrived, if we arrived, that they were not going to send us home this time. As soon as we entered the parking lot, you arrived within ten minutes. Neither my OBGYN nor the doctor that was working that evening made it into the delivery room. No drugs, no doctors and in one push, a nurse by the name of Cindy and your father welcomed you into this world.
There you were. Born at 2:38 a.m. on April 25, 2012 and weighing in at 6 lbs. 6 oz. Our perfect little girl. Beautiful in every way. We had several names in mind, including yours, but we were not 100% certain until daddy looked at me and said let's call her Aven. Your middle name on the other hand took about 48 hours to come by. We had thought of Greer, Mckinnley, and Mae, but decided upon Renee because of the mathematician Rene Descartes. ( but don't tell your Aunt April who also has the middle name Renee.)
You were a tiny thing. Wearing preemie outfits and sleeping so innocently. Once given the all clear we left the hospital and headed home. You fit right in to our home and your new surroundings. Your big sisters could not get enough of you and wanted to continuosly hold and kiss you, which I have to admit made me a nervous wreck. You were very easy to soothe and seemed to be doing great. That is why I was so suprised when I received a phone call from the State Health Department as well as your pediatrician's office seven days out informing us that your newborn screening had tested positive for cystic fibrosis and that we needed to have a another blood test immediately. That exact same day of receiving the phone call we were back at the hospital having another blood test ran to check for CF again.
I was definitely surprised, but I also knew that mistakes happen and being a newborn there were bound to be certain levels elevated. I had read a lot of information on the internet about the high number of "false positives" with the CF test and I took comfort in thinking that your screening was indeed a false positive, but when I received the second phone call in regards to the second test also being positive, I knew that this was serious. Most newborns have IRT counts ( protein counts)around 70 - low numbers are good and should continue to decline as you grow. Your first test came back as 246 ng/mL and the second test had jumped to 294 ng/mL. Within 48 hours we had an appointment to go to the CF center located at Children's Mercy Hospital in Kansas City, Mo. I knew that they would be able to do more testing to determine if CF was really an issue. We had scheduled a sweat chloride test as well as DNA genetic testing. Unfortunately you were still too little to have the sweat chloride test performed. They were worried that the electrodes would actually 'burn' the skin and so we decided to wait until you were a little bigger; however, we were able to draw blood and have it sent to the genetics lab. The bad thing is now we had to wait for 7 - 10 days for the results.
* I will try to catch you up in the next blog, but for now I must go. You are stirring in your crib so I must go get your enzymes ready.
Much love today, tomorrow and always,
Your Mother - Autumn
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