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


1 comment:

  1. Hello Aven!My name is Liliana Valencia Ahtiainen but every one calls me Lily... You probably think that I have a funny name and it is funny . My names sound funny because I am not from the US like you and your family are.. I was born in Peru and I moved to Finland (you can ask your mommy or daddy to show you where these countries are). I met your mommy many, many years ago when I arrived to Joplin Missouri. I was a little afraid because I had never left my family for a long period of time but this was something that I really wanted to do! I wanted to be an excellent clarinet player (this is a musical instrument) and I thought that this would be a great place to study. This is where I met your mommy... I met her when I was in the marching band... I had to wear an ugly green uniform with a big feather come out of a hat... I looked very funny but your mommy she always looked beautiful... She didn't have to wear the ugly uniform because she was in the flag squad and they had really pretty uniforms and they did some amazing things with these flags! I used to love watching them perform!!! Your mommy was always really, really nice to me, she helped me feel welcome and she had the most beautiful smile, which I know you see everyday . I then moved away from America and I came to Finland with my husband and I teach 6 year old children here!!! Just like your mommy teaches big kids, I teach a little bit smaller ones I had a little bit of a hard time learning their names... Names such as Vilho, Eero, Annina, Oona, Anu but I love the challenge of teaching these beautiful children! Sadly I lost touch with your mommy but then through Facebook we met again and I got to see all the exciting things that your mommy has been doing!!! How proud she is of your two older sisters and all that they do!!! I then found out that your mommy was pregnant with you at the same time that I was pregnant with my little boy Noa. I would follow your mommy's page because she had interesting stories. Then your mommy posted that she had gone into early labor and she was worried and was going out to the hospital... I was following your mommy's story because I was about to give birth to my own baby... Then the message came that you were born! You could tell how much your mommy and daddy loved you through her posts and photographs... My baby boy was also born early as well... you were born on the 25th and my baby was born on the 30th!!! I followed your progress... and then I read BABY AVEN UPDATE 1... I was so, so sad... You see sweetheart as parents we want only the very best for you.... Having CF does not make you any less perfect than what you already are... we just wish that you didn't have it... I have followed your life very closely... cried when your mommy cried, laughed at your funny, cute faces and sighed at the gorgeous pictures your mommy has posted on her page... you are an absolutely beautiful little girl. Please know that I pray for you every night because I think of you as Noa's older sister I will continue watching your journey from afar, but I will be near by in spirit... and if you ever venture out to Finland or Peru, you will always have a home!
    Love always,Lily, Milo (he is Noa's older brother he is now 3 years old) and Noa