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