On February 14, 2012, a beautiful miracle baby was born. Stormy had many complications in the womb. At just 14 weeks along, her mom was told that her unborn baby had Congenital Diaphragmatic Hernia(CDH), a severe birth defect where the diaphragm doesn’t properly form and the organs are in the chest. This inhibits lung growth and development and the heart is pushed over to share the space of the invading organs. We were also informed that the baby only had a small chance of surviving after birth. We soon found out it was a baby girl, and we were excited, but very scared. We had a lot of tests done during the remainder of the pregnancy, but we were told that our baby only had about a 5% chance of survival. Stormy was born naturally, and immediately rushed to the intubation room where they would work as quickly as possible to get her on life support as she was unable to breathe with all of the organs in her chest. The doctors informed me that getting her on life support had gone well, she had been stabilized, and that she was headed to the NICU to be further assessed. At that point, the doctors still didn’t know what her odds were that we would bring her home, just that it was slim to none. They estimated she’d be in the NICU for around 4 months if she did ok. She had a lot of touch and go moments, minutes, hours. They were the longest days of our lives. She had her diaphragm fixed when she was 21 days old. What a long, but happy day that was. I held her for the first time when she was 24 days old. She did extremely well after her diaphragm was repaired, and we brought her home when she was 6 weeks and 2 days!!
Stormy has been receiving in-home occupational therapy from the WA Elks Therapy Program for Children since she came home from Portland. Due to Stormy’s many medical needs and complications it was/is very important that she does not get exposed to germs. Her family has been very grateful that the Elks has been able to provide the services Stormy needs inside the home!
Therapy has been focused on getting Stormy strong enough to participate in age appropriate skills. Nobody ever expected that at her first year birthday she would be sitting, crawling and side stepping around furniture. As of this date Stormy is standing up in the middle of the floor and taking steps, something her doctors would have never imagined. Stormy continues to get most of her nutrition from a feeding tube, however she is now enjoying some table foods.
Mom, Dad, and 2 sisters work daily with Stormy and practice all the exercises and activities they have learned through therapy! The Elks Therapy Program is one piece of the puzzle that helps Stormy be who she is today.