“You become an advocate the moment you tell your story.”  These words are the rallying cry of the March of Dimes, and today, I join the millions of other families all over the world who have lent their voices to champion the March of Dimes’ mission to give every baby a fighting chance.  I am truly honored and grateful to Bambinos for sharing their platform and giving me this opportunity to share our story on World Prematurity Day.

I kept vigil at Jack’s bedside twenty-four hours a day while my husband went home in the evening to care for our young toddler and wait for the phone calls that kept coming in the middle of the night to rush to the hospital.  While we watched in helpless terror,  the list of complications continued to grow.  He suffered a grade 3 intraventricular hemmorage and developed a thrombus in his right leg. The thrombus required blood thinners to treat, and we just had to hope they wouldn’t also cause his brain bleed to worsen. He also developed a secondary infection in his lungs and ultimately required more antibiotics than his tiny veins could handle. He had a central line placed in his jugular the day before his first Halloween because all other access points had been depleted. The procedure was done at his bedside while I stood in the hallway shaking because the simple process of moving him to an operating room could have put his life in danger. 

On one of our darkest days, we made the difficult decision to have both boys baptized in the hospital for fear neither of them would ever make it home.  Jack’s brother, George, had just been diagnosed with the same frightening infection, and Jack’s life was hanging by a thread.   My husband and I drew the sign of the cross on their foreheads and prayed together for God’s presence.  We prayed for Him to draw close to Jack and George and make sure they knew they were not alone.  We were too afraid to pray for a miracle that might not happen, and for reasons that stretch comprehension, those prayers that went unsaid were answered.

That same night, through a chance encounter in the hallway, we met one of the nurses who I will forever credit with saving Jack’s life. She was the first person willing to tell me with conviction that they were both coming home.  I’ll never forget it, she said she had already discussed it with George and she and Jack would have to have a conversation about it, because he was coming home too.  And so they did.  The very next day, Jack opened his eyes for the first time in weeks.  Although the fight was far from over, from that day forward, his condition continued to gradually improve.  In the meantime, we were able to hold George for the first time in months and even gave him his first bottle.  Jack’s chest tubes came out one by one, respiratory support steadily declined, and somehow, by the grace of God, both boys were breathing on their own by Christmas.

The miracle of their survival and their heroic journey home has changed our lives forever.  Two years later, there’s not a day that passes that I don’t wonder what might have been and remember just how fortunate we are to have all three of our precious boys at home. There are still challenges. Jack has had two brain surgeries since we left the NICU and countless visits with specialists and therapists. His lungs are still more fragile than other children his age, and he was hospitalized with RSV just last week. His triumphs, however, continue to amaze us. We were told he might never talk or learn to walk, but he is defying the odds. He is just beginning to talk, and he walked into preschool this fall on his own two feet. His brother, George, is thriving and the NICU is becoming more of a distant memory for him every day.