Olivia

My Hero, My Inspiration, My Guardian Angel who watches on me from above...

October 1st, 2002... after 3 months on bedrest, 28 hours of labor, and 1 C-Section later our Miracle arrived! Miss Olivia Suzanne Arner - 6lbs. 3oz. and 21 inches long.

In a single second the greatest and scariest moment of our life Occurred. I remember the Dr's saying she's out, but never hearing a cry! The operating room went crazy with Doctors and Nurses running all about trying to get her to take her first breath. Immediately she was intibated (they placed a tube down her throat to help her breathe), and rushed away! 3 hours later the Doctors came to my recovery room to tell me that they were taking her away in a helicopter to another Hospital to do more tests. I remember begging them to let me see my baby for the first time before she left, and I was able to spend a minute with her. Eric went to be with her and would travel many times a day between hospitals to bring me updates, videos, and pictures. 4 days later...I finally went to see her. When we arrived they were again getting ready to take her by helicopter to another Hospital. I remember holding her, waiting, and the Doctors telling us that our tiny little baby was in heart failure...we were so scared!



We arrived at Phoenix Childrens Hospital where she spent 2 days in NICU before she was taken into Open Heart Surgery. I remember the day so clearly...saying goodbye before surgery, waiting in the family room for almost 8 hours. When we were finally able to see her, I couldn't believe how many tubes, wire and machines she was hooked up to. It was very touch and go for a few days, but she pulled through! We spent 4 weeks in the ICU where she underwent 2 more surgeries. A Tracheostomy, and a Feeding tube placement. She was then transfered to Banner Desert Hospital where she spent 5 more weeks, underwent more stomach and ear surgeries, and many more tests.

Olivia was diagnosed with CHARGE Syndrome. It is a rare syndome that affects less than 1 in 15000 babies. It can affect many different parts of the body. The anomalies that Olivia had were Conginetal Heart Defects (6 in all), Hearing imparement, Vision imparement (she was legally blind, but could see), and breathing abnormalities.

Olivia came home for the first time at almost 3 months of age. We went through alot of training to know how to care for her! She came home on 2 different monitors, a ventilator, feeding pump, and oxygen. Our house became a Hospital. We had some nursing, but mostly cared for her ourselves...with LOTS of help from Family!

Olivia was in and out of the hospital almost weekly...the Doctors would joke that she could come in with a diaper rash and they would admit her! The nurses always loved having Olivia there and they would fight to care for her. We would bring all of her prettiest dresses and play dress up! We would have slumber parties in her room! When nurses would come on for their shifts they would all stop in to see Little Miss Olivia!

Just before her first birthday Olivia went in for her second Open heart surgery. It was extremely scary and very touch and go for weeks! The Doctors were amazed by her strength and her will to live. They would tell us daily what a miracle she was! On her birthday, we decorated her hospital room with balloons and butterflies...we dressed her in a big pink tutu and crown...and brought in a cake with a princess on it to share with all of the Doctors and Nurses. When we left the plan was another surgery around her 2nd or 3rd birthday and then we could hopefully take her off Oxygen and remove her trach! I was amazed how much she changed after this surgery. She began growing and growing almost tripling her size! She started sitting up, watching cartoons, eating baby food (only the Orange food...weird huh?), and Sign Language. She would sign More, eat, and I Love You.

January 2007 only 3 months after her last heart surgery, Olivia began having complications at home. We took her to the emergency room where for the 1st time Ever she was sent home. We just knew there was something wrong and called her heart Dr. She was directly admitted to the ICU. They ran tests and saw that she needed another surgery right away! The Dr.'s were concerned that it was so early, but there was no other choice! The night before her surgery we stayed up with her and I rocked her until 4 in the morning. In the morning all of the visitors started coming and she would say goodbye to each one by signing I Love you! I remember walking her into surgery, kissing her, and signing I Love you! 6 hours later...the Doctors told us she was barely hanging on and they had to put her on ECMO (life support). They told us all of the scary side affects and things that could happen. But we had been through this twice before...I knew how Strong Olivia was and what she had already overcome...I knew she was my Miracle! She spent 3 days on ECMO, and underwent 2 more emergency Surgeries in her hospital room. Her poor little body was so tired.

On January 25, 2004 Olivia was able to give up her fight and return home to her Father in Heaven. I held her and rocked her for a few hours after she passed while all of our family was there in her hospital room with us. It was the first time that I had held her without her being hooked to monitors and machines. I remember sitting there thinking how am I ever going to leave here knowing that I will not hold her again...

A whirlwind that I don't clearly remember followed...we held a beautiful service for her. I remember Eric and I walking into the church with our family looking around at all of the people, there must have been atleast 500 and thinking of all of the people that Olivia had touched. The church was filled with family, friends, Doctors, Nurses, and people who never even met her but were so touched by her! I knew that her mission on earth was complete and that she did more in her short 15 months than most people accomplish in a lifetime.

Olivia...

I miss you every day! You are my strength! I know you are in Heaven smiling down upon us. I picture you running through fields chasing butterflies...I think of you everytime I see one! I am so honored to be your Mother. I'm amazed at everything that you went through in your lifetime and never shed a tear. For someone who could not speak and could not hear...you communicated and touched more lives with your sweet spirit than anyone I know!

I love you my Sweet Angel, may you rest until we are together again!

Love,

Mommy