Happy Birthday!!!!

Four years have come and gone so quickly. It is still so clear the day our family journey began.

June 19, 2006. 12:51 a.m. Arianna Jolie Snell came into this world the same way she has lived, fast and confusing. Weighing 6 lbs 2 oz and 18 inches long. Due the breathing difficulties and multiple abnormalities she was transported to our local children's hospital. After three days we were told Arianna has Trisomy 13, and she would most likely not survive the week, her syndrome 'was not compatible with life'. I had had a normal pregnancy and, she was not pre-term diagnosed. After much crying and praying we learned all that we could to help bring her home, we did not want her only memories to be of the hospital. At 12 days old Arianna came home, she was at peace in her new room, and enjoyed all the new sights and sounds. She did have her bumps in the road however, an almost overdose of Morphine at a month old almost took her from our arms. Her respiratory system was suppressed, and she could not get a deep breath. After Matt gave her a rescue breath or two she started to pink up and take a few good breaths on her own. We never once thought that we should do what it takes to help her, and if it was her time what we did would not have worked anyway.

Her first year of life was very full of unknowns and hospital stays. In October at 4 months old she started to have seizures, we spent 5 days in the hospital yet they could not diagnose what had caused her the stop breathing and her heart rate to plummet. Only after our returning home did we start to fully understand what was happening. With in 12 hours Arianna had suffered 6 seizures, one every two hours, we could her sats and rate on the pulse/ox, and she would go limp and lifeless, it only lasted a short time and then she was back with us. That morning her home health nurse came and we explained what the night had been like, she knew right away that it was in deed seizures. She talked with our Ped and we got her on meds right away. The true cause of all this seizure activity, Arianna's brain was getting squished. She had Mitopic Crainal Stenosis at birth, the front of her skull was fused and would not allow her head to grow. At 7 months old she went in for crani repair. After 8 hours with an amazing plastic surgeon her skull was opened and expanded she that she might grow and thrive. She did amazing things after that. learning to rollover, to drink from a bottle, and just living past the expectations.

In April we learned that she was a silent aspirator, every feeding she was dumping her milk into her lungs and never coughing or complaining about it. After much discussion we made the decision to have a G-tube placed so that her lungs would not get worse. With surgery scheduled for late May we were feeling better. On May 11th, a day before mothers day, Arianna went into full respiratory arrest. She was intubated upon arrival at the hospital, we spent the next 18 days fighting lung issues and with the docs, she needed her g-tube but they would not do it with her lungs so bad. I knew that she would not recover her health without it so we fought. On June 4th it was finally done. It took her another month to fully recover and return home, and she has done so much better since the G-tube was placed. That was her first birthday, and only, to be spent in the hospital, lots of family and friends came to visit her on that special day.

The next three years saw less hospital stays and less surgeries. Her tonsils were removed along with that weird cyst by her ear. But really we have been blessed with less.

In this time she has done much in her development. Mastering the roll so that she might check out her surroundings. And in this last year, sitting up, crawling short distances, pulling to a tall kneel and then standing, and walking with assistance. Going to pre-school, although rough to let her go at first ( I got over that, love the time alone) she made most of the new strides due to those in her life that saw her as a child, not the diagnosis. Teachers and aids that wanted her to see and learn new things, it has only made her want more!!!

So today I say to her: Thank you for being my child, for showing others that you are not what is expected, that you write your own rule book. For teaching and learning right along with me. I am so blessed to share my birthday with you, you will forever be the present that could not be topped. You are so much more than I ever thought possible. In my eyes you are 'Life Compatible'.