How do you spell HERO?: September 2012

Our son Austin’s journey here on Earth started on April 11th, at 1:12 in the morning at Mercy Southwest Hospital in Bakersfield, CA. It had been a challenging delivery, so we were all so relieved that Austin was finally here. Our joy quickly turned to concern because Austin was not breathing and his legs were folded up by his ears from being in the breech position for so many weeks. The NICU nurses were in the room when he was born and they cleared his airway to get him to start breathing. They placed him on Momma's chest for a quick moment and then rushed him to the NICU to keep a close eye on him.

Since Austin was not getting better and he needed special care, it was decided that he should be transferred to the Cedars-Sinai NICU in Los Angeles. On April 12th, we watched our son speed off in an ambulance and we went home empty handed to get packed to go be with him. During the first weeks at Cedars, we learned so much about his symptoms and were very hopeful that Austin could get better. Austin had an odd set of symptoms that perplexed so many doctors. He was not able to suck, swallow, or gag, and lacked some of the natural reflexes he should have. He had bad reflux and slow gastric emptying. Physically, he had a recessed chin, contractures (or immobility of his joints) in his shoulders, elbows, hands, hips, and knees. He also did not move much, had low muscle tone in his core, and often had a blank stare. The doctors ran so many tests and each one came back negative.

For a while, he was making small improvements. His joints were gaining range of motion with physical therapy, some of his reflexes were starting to work, and he was swallowing with nerve stimulation from his occupational therapist. With all of the negative test results and these small improvements, the future seemed promising. Sometime around May 15th, Austin developed aspiration pneumonia because he could not protect his airway due to his low muscle tone and swallowing issues. The doctors had warned us this day would come, but Austin was never the same after that. Although he recovered from the pneumonia, he slowly started deteriorating.

We had many difficult discussions with the doctors about how to move on and we knew the outlook was not good. Even though there were no test results to prove it, they were convinced by his symptoms and lack of development that the problem was with his central nervous system in his brain. It was then that we decided to get Austin home and treasure the time we had with him instead of wasting any more time trying to figure out what was wrong. In order to get Austin in a condition to come home, he needed surgery to get a feeding tube in his belly, a nyssen to prevent reflux, and a muscle biopsy that could be tested while we were at home. Austin pulled through his surgery and came home June 20th on Hospice care after spending the first 10 weeks of his life in the hospital.

Austin was finally at home with his family where he belonged. He got to meet his sisters for the first time along with many family and friends that came to see him. Austin got to experience so many things that he never could have in the hospital. He got to go swimming, feel the warm sunlight on his face, touch the grass with his toes, watch and listen to his sisters play around him, watch fireworks on the 4th, and be at Lexi’s 2nd birthday party. He got to feel the warm loving environment of his home instead of the cold bustling hospital. While at home, Austin continued to get worse. He showed more new symptoms along the way that pointed to a negative outcome. Just after his sister’s left to go to Aunt Jenn’s, he started having trouble breathing. He was using his accessory muscles to breath and Hospice said that was not a good sign. Austin was now on constant medication to try to keep him comfortable, but there were still times that he was very restless. Austin’s journey here on Earth ended on July 18th at 6:23 pm when he took his last breath while in his Momma’s arms.

We want to thank the doctors and nurses of Cedars Sinai NICU for the love and care they not only showed our son, but us. We are forever grateful. Dr. Cahan, Dr. Brown, Dr. Le and Dr. Peyton – Thank you for your amazing care. Dr. Le – we are forever grateful for your diligence and honesty with us. If it were not for you, we may not have had the time we did with him at home. Austin's Nurses: Veronika – for being Austin’s night angel and for loving him as if he was yours. Agnus – for being the happiest, most positive person we have ever met. The joy in your heart is amazing. Lisa – for being our rock. Always on team Austin and always fighting for what we wanted for our son. Stefani – for being someone who always helped us breathe easier. For always making us feel like we were doing the right thing for our son – and for supporting us through everything. Lora – for being our angel. You not only loved Austin, but loved us. You took care of us……and did more for us than you will ever know. Your friendship is such a gift. Austin's Occupational Therapist Michele – for being honest and not sugarcoating. Your honesty and support and friendship helped us get Austin to his best and get him home. Austin's Physical Therapist's - Jean, Deb and Tracy, thank you for stretching and loving on our son like you did. To the NICU Social Workers Randi and Cindy - you are amazing and we are forever grateful for you two.

One special example of the bond that Austin had with his caretakers was given to us by his sister Avery. The time 2 of his nurses (Lora and Stefani) came to visit Austin at home, Avery went down for a nap in the middle of the visit. When Avery woke up, the nurses had already left. Avery went to her Momma with her tiny little voice and asked, “Momma where did Austin’s angels go.” This story restores our faith that Austin’s life and passing is truly God at work because no one ever spoke about his nurses in that way in front of Avery.

Austin was never able to speak, but we imagine that if he could, he would have had words of encouragement about his situation and never would have complained about his struggles. He loved his nurses, doctors and the staff at the Cedars-Sinai NICU. And so do we.