Thursday, August 21, 2008

Avrianna Lee

Avrianna's pregnancy was our second attempt to start a family. Unfortunately we had complications early in my 1st pregnancy which resulted in a miscarriage.
Avrianna was to be due around Christmas time 2002. I had gestational diabetes that I wasn't able to control with my diet so I needed to give myself shots 3 times a day to help regulate my sugars. Avrianna wanted to bless us with her presents early as on October 24, 8 weeks early, my water broke getting ready for work. After many tests that were performed to make sure she was "ready" they allowed me to continue labor and deliver her 8 weeks premature. Avrianna was born 5lbs 6oz, 19" long, and she was a pistol from second one. Her lungs were formed and working but she still needed a pick me up for a couple days on the oxygen hood in an incubator. She didn't have the suck, swallow, breathe thing down pat so we had to teach her how to eat. While we were doing that she was fed mostly by a tube that routed into her nose and down into her tummy. The feeding issue became the most challenging thing for us to get her go home. Avrianna was born with a blood disorder called Hereditary Spherocytosis. This is means her blood is shaped differently then you and I (sphere shaped instead of donut shaped), which has a tendency to back up in her spleen, and is also known to have homiletic anemia. It has alot of the same symptoms as of Sickle Cell. She will always have the disorder but will probably need a complete spleenectomy later in life to help manage it. She spent alot of hours/days under a bili light as she was VERY yellow with jaundice. She escaped having a blood transfusion in the NICU but later in life wasn't so lucky to dodge that bullet. After spending 6 weeks in the intensive care unit learning to eat and us learning how to raise a little girl with a blood disorder, they sent her home. With giving us the mind set that with her being premature she could be "behind". I can remember taking her home and laying her on the couch looking at her wondering, NOW WHAT? I have been in the shadows of nurses and doctors with this little girl and we're all by ourselves now. I was scared out of my mind. We were referred to a special needs pediatrician that has helped us tremendously with caring for her. We started with having blood draws done once and week and worked our way to having them done once every year at the ripe old age of 5, unless she was sick we would do them more regularly. Avrianna can not fight off bugs and viruses like most people can so she tends to hang onto it longer and will get real yellow from the jaundice, pale, lethargic, and her spleen will back up causing it to enlarge. Avrianna has always held her own without the need for any blood transfusions until in Florida spring 2008 on our family get away she some how got the parvo virus that caused her system to shut down, she was diagnosed with a Aplastic Anemic Crisis. Her spleen enlarged to a dangerous size, she was so tired, her blood count was low, and her bone marrow stop producing ALL new blood cells. Avrianna averages on her own her hemoglobin around 10 and her retic (making new blood cells) is always in good range for her. At the time of her first blood transfusion her count was at 4.9 (normal transfusion is around 6) and her bone marrow still wasn't making new cells. She had a miserable time with the transfusion as her little veins didn't like the rate they needed to run the drip in. She had a high fever and started to go delusional I was so scared with knowing this could take her life! After 5 days in the hospital she was able to go home, but her body took 6 weeks to get back to her "normal". Avrianna had her spleen and gall bladder removed at age 6 in December '08 at Children's Hospital of Wisconsin in Milwaukee (along with her brother getting his hip surgery done at the same time). The surgery was done laproscopically so she only had 5 lil incision in her belly. Her spleen was very enlarged when it was removed, I was told it was the size of a grown man's hand. She is doing wonderful after surgery and she is even more excited to be able to do more active sports again. Our main concern with her is if she should go septic, as without the spleen her system can't fight off certain bugs n virus' and she will tend to hold on to an illness alil longer then normal. With her being at such a high risk of compromised health our family chose to Home school her till 2nd grade. She did doing wonderful and went smoother then I has ever anticipated it to go. Way to go! Guess we showed them that she definately isn't "behind" in any aspect of her life. She in now in the public schools in the Neenah School District and she is loving it :) Avrianna loves to swim, dance, do artsy fartsy projects, and is into all the girly girly stuff. She is always on the go and always needs to be busy. She was approved for a Make A Wish and in Feb '09 our family went on a Disney Cruise for 7 days. She is a wonderful big sister to her little brother who is only 14 months younger then her.
Avrianna is currently in 6th grade at Horace Mann Middle school.  She has exceeded all of the Dr's expectations as she is already a year in school ahead with her age and she still has tested out to a grade ahead of that in some subjects.  She just had her 11th birthday and to celebrate we went on a Carnival cruise to the Bahamas.  She has a gift to excel at everything and anything she does, I'm so proud of the lil lady she has become.  She has been playing the piano since 2nd grade, plays bells n church, is apart of the Boys n Girls Brigade, and Dives with the Fox Valley Dive Team.  Avrianna goes by the name Av now by her teachers and friends and is growing up faster then I can believe.  She will be something/someone special when she gets older, just you wait and see.

I am so proud to be her mother! Look how much she's grown :)

Taken 10-13

Taken 8-11

Pic taken July 2010
Pic 9-09

Pic taken 9-08
Pic taken 2-07

Pic 11-06

Pic 12-03

Pic 11-02
Pic 10-02

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