Jace Garrett Steinhaus arrived on March 20th, 2008, at 9:36am. He weighed a whopping 4lbs, 1oz and was whisked immediately away after birth to the neo region of St. Luke's Labor and Delivery. I remember seeing him seconds after his birth, with wide open eyes, even though he couldn't cry because he wasn't breathing. The neo team intubated little Jace, assessed him, and then after about 45 minutes wheeled him in to my room in an isolation box so that Danny and I could see our son before he was taken over to Texas Childrens. Our journey with Jace, which had already seemed so long and uncertain, had only just begun.

During the next 24hrs, Danny and I were bombarded with a list of the problems doctors found with our son. Along with other things, xrays indicated that Jace was probably missing the middle part of his brain, and that his esophagus was malformed and attached to his lung, which of course would inhibit any type of feeding. An ultrasound of Jace's heart revealed that he had a large hole between his two Ventricles, causing extra blood to flow to his lungs instead of to the lower part of his body. On top of all this, Danny and I were further informed that genetic studies of our son indicated that he had a genetic disorder called Trisomy 18, a disorder which occurs randomly during meiosis like Down Syndrome, but which is considered lethal because of the extreme problems these babies are born with. Basically, it's a miracle little Jace ever made it to birth. The larger portion of babies with Trisomy 18 don't make it through the entire gestational period, and those who do have very short predicted life-spans.

Needless to say, this news was extremely hard for both Danny and I to hear. Over the next several weeks with Jace, we took him off of the respirator and decided to put him through surgery to fix his esophagus and put in a g-tube into the stomach for feeding. After over five weeks in Texas Childrens, Danny and I finally got to bring Jace home last Friday.

It's been a wonderful week with our son at home. Although Jace is still feeding into his g-tube, and he still has a hole in his heart, he looks and acts like a normal baby except for his abnormally small size. The doctors still predict a grim and short future for our son, but Danny and I are holding onto Christ. Nobody can predict how long or how short our lives are. Knowing that our son has a potentially lethal genetic disorder has driven Danny and I to realize the meaning of living each day as though it were our last day. We are enjoying Jace today...not knowing about and trying not to worry about tomorrow.

Keep our little son in your prayers! He is a miracle...and he reminds us every day of God's grace. Children are truly a blessing, and we wouldn't trade our little Jace Garrett for anything. :)

Looking to Jesus ~