Owen was born on April 21, 2011. At 24 weeks, 5 days gestation, he was more than 15 weeks early and was the average weight; 1 pound 12 oz (800 grams). At first, it seemed Owen was going to shine his way through the NICU. He required very little respiratory support and there was even talk of extubating him in the first few days.
The honeymoon did not last very long. At 8 days old, Owen had his first surgery when he had a PDA ligation. Then at one month old, he began getting very sick. He was suddenly needing a lot of breathing support and getting very bloated. On May 24, Owen had emergency surgery because the doctors suspected perforated bowels. They were correct. His jejunum (upper portion of the small intestine) was filled with micro perforations due to an attack by a common cold virus called CMV. We almost lost Owen that night, but that’s when we started to see just how much he would live up to the meaning of his name, “young warrior”.
The damage to his intestines resulted in a domino effect of several complications for Owen. He required two more surgeries related to the perforated intestines, one to close his wound and then another reattached his intestines that had been cut into 4 pieces. While his intestines healed, he was not able to get nutrition from milk, so was nourished through IV feedings for most of the first 3.5 months of his life. The nutrition is not as adequate as milk and so Owen became malnourished leading to brittle bones and rickets – as a result Owen suffered multiple rib fractures and 5 total fractures in his legs and arms These fractures were not due to abuse, but due to how weak his bones were. He also became very jaundice from the IV nutrition which temporarily turned his skin and eyes yellow and damaged his liver.
Once Owen finally was able to start eating, he developed very severe reflux that caused further damage to his lungs. He ultimately ended up needing another surgery to place a g-tube and get a Nissen which stops the body from being able to reflux.
Another complication that Owen sustained is brain damage on both sides of his brain. As of today, it’s still too early to know what, if any, long-term issues that Owen will have from this damage, but it puts him at very high risk for cerebral palsy.
After 181 days, Owen was discharged from the NICU. He was 2 days shy of his 6 month birthday and 2 1/2 months past his due date. He came home on oxygen and with a g-tube for feeding and was extremely developmentally delayed.
In the next 6 months at home, Owen has had two more surgeries and 3 additional hospitalizations for respiratory illnesses. In all, he’s had 223 hospitalized days before his first birthday. That 3rd respiratory illness resulted in him spending his first birthday and 224th (and still counting) day hospitalized in the Pediatric Intensive Care Unit. At one year old, he still requires oxygen to support his breathing and he only orally eats a couple of tablespoons of baby food per day, the rest of his nutrition comes from his g-tube. He can roll from side to side and is just starting to bear weight on his arms and legs for a second or two at a time, he’s making a ton of progress, but is still very developmentally delayed.
Beyond his amazing feats of strength in his first year, Owen’s best feature is definitely his personality. Somehow, he’s a smiley, happy little man who is determined and hard-working. He has a bright future and, I know, will continue to amaze in the years to come.