Austin came into our lives at 6:36 am on March 14, 2009 weighting 6 lbs. 5 oz with a height of 17 inches. He was born through caesarian section due to failure to progress. During the operation he was stuck in the birth canal, which resulted in his bruising seen in his birth picture. He was immediately whisked off to the NICU as he had pitikia (little red spots from burst blood cells) all over his body and a few unique physical features. Four days after his birth we learned that he had a very rare chromosomal deletion (4q 21.1-23) and that he was a truly unique and special baby.
After two and a half weeks in the NICU and learning that all of his major organs and functions were working appropriately, we thought we were finally going to be able to bring him home. The morning we were to bring him home, he choked on his N-G feedings and the decision was made to transfer him to Riley to have an operation for a nissen fundoplication and a G-tube. The operations went well and we finally brought him home on April 6, 2009 (he weighed 5 lbs. 3 oz.).
What we do know about Austin is that he has cataracts in both of his eyes (which currently only cause minor vision impairment), has no hearing (we are working with the doctors on this), has low muscle tone and is developmentally delayed.
It is truly amazing how having a special child changes who you are and what you value. We have completed the grieving process for the life of the child and the dreams we thought we were going to have and have accepted our new life and the gift of Austin. We look forward to learning more about him as he grows and develops and believe our lives will be enriched more than we could have ever imagined.
