Volunteer Support Coordinator
My name is Kristin Nossaman. I’m a married 32 year old stay at home mother of two wonderful boys. Our oldest son Isaac is an8 year old gastroschisis survivor. After a very bumpy ride our warrior was born at 34 weeks via C-section.In addition to our gastroschisis diagnosis, two months prior to his birth I was placed in the hospital on strict monitored bed rest due to ruptured membranes. By the grace of God, and the diligence of a fantastic high risk OB team,Isaac was born weighing 5lbs, 13oz & 17inches long.Aside from being premature and having gastroschisis, he was fit as a fiddle! At birth all of Isaac’s large & small intestines were exposed, and his testicles had also come through his opening. Isaac was taken to surgery shortly after being born and wasable to have an immediate closure.
During his stay in the NICU we experienced the one-step-forward, 15- steps-back dance that many other gastroschisis families can identify with. He was placed on and taken off of the respirator several times, required 4 blood transfusions, and failed more tests than I care to remember. Through it all, we gave it all to God, and he watched over our little man. As a preemie with gastroschisis we were told he wouldn’t likely go home until his due date which was 3/23. Our little fighter continued to surprise everyone and began to have the ever-coveted bowel sounds and FINALLY A POOP!!! Only another gastroschisis parent can understand why anyone would cry over poop!
After 2 weeks in the NICU Isaac was able to have his first feedand quickly mastered the “suck, swallow, and breathe” pattern.After passing his car seat test we had our overnight stay, and we were homeward bound on 2/23! It just so happens that my birthday is 2/24, and his coming home will forever be the best birthday present! Isaac had severe reflux, and we spent our share of time in the PICU due to pneumonia, bronchitis and a horrible bout with RSV. Through it our warrior continued to fight!The only other surgery he has had to have was to repair an umbilical hernia. To look at our brave boy now you would never know he has fought such a battle. He is smart as can be and LOVES to play soccer and wrestle with his little brother.
It wasn’t until December, 2013 that I learned about Avery’s Angels Gastroschisis Foundation after a local family shared their journey on the news. I am so thankful to have found AAGF, not only as the parent of an older survivor, but because I now have the opportunity to volunteer and work with other families. The months leading up to the birth of our son were some of the scariest and lonely times of our life. Eight years ago there was little educational material and no support for parents who were expecting a baby with gastroschisis. Through Avery’s Angels, I’ve been able to reach out to families along their journey and hopefully help them to never feel as alone as we did. In my 5 months as a volunteer I’ve been able to connect with other families from our area and share a common bond with them through our journey. We have been blessed beyond measure to have had a relatively smooth journey. I am happy to be able to share our positive story to offer hope to those who might need it. The feeling of being able to raise awareness for gastroschisis, provide support, and advocate for research during thecommunity outreach events that I’ve been a part of,has been nothing short of amazing. It truly is an honor to be a part of Avery’s Angels Gastroschisis Foundation.