Our journey began when we tried to have our 2nd child. We had multiple miscarriages after our daughter was born and thought that maybe she would end up being our one and only. In the fall of 2006 we were excited to find out that we were expecting again, but felt understandably guarded from the previous pregnancies. Before we knew it we were going into the 2nd trimester and things were going well so far. It looked like we were finally going to have our baby!
Things were going well until around 28 weeks gestation when the baby wasn't growing normal. I was put on partial bed rest and went in for many non-stress tests and ultrasounds. My daughter was born small, but she was healthy so I had hoped that maybe this one was going to be another healthy peanut. After an ultrasound on April 10th 2007, the Dr. admitted me to the hospital for a possible C-section. He said that the placenta was shutting down and that the baby was in distress. At the hospital they found many markers that showed that our baby possibly had a disorder incompatible with life.....they were preparing us for the worst.
Isaac Ezekiel was born on April 13th 2007 at 33 weeks gestation weighing in at only 2 pounds 8 ounces. His middle name, Ezekiel means "God will strengthen," which seemed fitting since he would need all the strength in the world (and us too). Although he was born small, we were still hopeful since so far the tests had come back negative for the disorders the hospital thought he would have.
When he was a week old some tests came back saying that he had a missing portion of chromosome 10 and later they found out that he had extra material on chromosome 14. Our world as we knew it had changed forever. There was very little information about it. Would he live very long?---Unknown. Would he walk or talk?---Unknown. We just had to walk in faith and hope for the best.
Isaac spent 4 long months in the NICU mostly battling feeding difficulties and infections. When he was 3 months old we discovered that he had some airway abnormalities after a very difficult intubation for his G-tube surgery. We were then told that he would need a trach and that he would probably need it anywhere from a year to to the rest of his life. ---Another unknown. He came home with medical equipment, nurses and lots of appointments. That first year was a whirlwind as there were many hospitalizations, mostly from respiratory related illness. We made it through that first year though with the help and support of great people and lots of prayer.
