As so many in our community already know, we were blessed with a beautiful little baby girl, Jillian about 4 years ago. Healthy, funny, witty (yes, sometimes sassy) and downright fun, she has been such an awesome addition to our family. Last year we felt God calling us to have another child. In July we discovered we were pregnant but very soon had complications which led us to believe we were miscarrying. After a visit to the doctor, an ultrasound showed we had been pregnant with triplets (naturally) and were miscarrying two of the babies. YES! That meant although we had lost two, there was still one little heartbeat going strong. There are no words to describe our feelings at that moment. We went on to have a completely normal pregnancy. A true miracle child would join our family in March 2014! On Wednesday, February 12th (3 weeks early) Gavin was born a handsome, 6lb 5oz sweet baby boy with lots of dark brown hair. He was just what we had hoped for and we were so excited! The first day of his life was wonderful. He was held and bathed by his big sister, Jillian and he was able to visit with family and friends. As his first day with us progressed, it became evident something was wrong. The next day, Gavin was life flighted to Kosairs Children's Hospital in Louisville, KY because he was not eating or moving on his own. After several days passed, many tests were performed and he was placed on a ventilator, it was determined Gavin had a rare genetic disorder called NKH (Non Ketotic Hyperglycinemia). We had no idea this metabolic disorder even existed, let alone we are both carriers of it! Our little man was laying lifeless, unable to eat, move or breathe on his own. The doctors and staff did a wonderful job explaining what his future would be like, although it was not what we wanted to hear. There is NO cure for this disorder and although some treatment is available, it often causes more harm than good. He would have a short life expectancy and would have to endure severe mental retardation and all of the problems that came along with it. No walking, talking, eating on his own, etc. He would need constant care for the rest of his life. After much prayer, we felt completely at peace removing his ventilator and giving him back to the Lord. We removed the ventilator and were told he would pass away quickly but God had other plans. He remained alive for an entire extra day... NO tubes, NO wires, NO testing... It was an amazing bonding experience! We are so grateful to God for that awesome day! On Thursday, February 20th Gavin took his last breath. Since then, we have spent many days grieving over the loss of our precious baby boy. We have met with genetic counselors, a maternal fetal specialist, etc. to determine what our future looks like in regards to any more biological children. Because we both carry the NKH gene, our risk is very high for any of our future children to be born with this disorder. We have prayed, seeked counsel, prayed some more... We knew we wanted to have more children but how?
"Rejoice always, pray continually and give thanks in ALL circumstances for this is God's will for you in Christ Jesus."
- 1 Thess. 5:16-18
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