Ethan and Jack

Colbea, Cooper and Chase Story NICU at Saint Barnabas Medical Center
Bridget Story NICU at Saint Barnabas Medical Center
Ethan and Jack Story NICU at Saint Barnabas Medical Center

Ethan and Jack Story NICU Saint Barnabas Medical Center

As I attempt to write this, I am sitting among the giggles of my two-year-old twin boys, Ethan and Jack. During pregnancy, we were given a 30% chance that both boys would survive. Ethan had only a 20% chance of surviving his first 24 hours. However, despite the odds, we have two beautiful boys who we love until it feels our hearts may burst. This is due to love, prayers, modern technology, and the wonderful care and support from “our” NICU, the SBMC NICU.

My husband, Scott, and I were overjoyed when we found out we were pregnant. However, nothing prepared us for the shock, pure joy, and slight fear that filled our hearts when our doctor announced, “There’s a second one in there!” Everything progressed normally until our high-risk doctor told us we had something called Twin-to-Twin Transfusion Syndrome (TTTS).

TTTS is a problem with the placenta that robs one twin of blood and amniotic fluid (making growth and development difficult) and floods the other twin (creating cardiac distress). After surgery, several procedures, hospitalizations, and three months of bed rest, the doctors decided the boys needed to come out one Friday in November 2007.

The boys were born at 30 weeks weighing 2lbs, 9 oz (Jack) and 2lbs, 5 oz (Ethan). Ethan was bloated with fluid and was in organ failure. The boys were whisked into the NICU where the “real work” began. Ethan was put on a ventilator, was under the bilirubin lights, and had tubes and wires everywhere. Jack was incredibly skinny, needed oxygen and the bilirubin lights, but comparatively was doing better. We experienced an emotional roller coaster directly related to the gains and setbacks of the boys. The doctors and nurses were our lifelines, explaining what was happening and taking loving care of our boys. Six weeks later, we brought Jack home the day after Christmas -- what a gift! However, Ethan continued to struggle.

Thankfully, many of the details, surgeries, tears, and heartache are a bit of a blur to us now. Ethan remained in the NICU for 19 weeks. We relied on the information and support from both professionals and the other families that we met in the NICU. Even after Ethan was moved to an inpatient rehabilitation facility for another five months we still heard the caring NICU nurses and doctors.

Everyone is home together now! Ethan still has a feeding tube and receives PT, OT, speech therapy and is in a feeding program. However, as if to prove a point, he ate his very first bowl of baby oatmeal TODAY. He is an adorable, happy, easy-going, loving little meatball. Jack is also a beautiful, funny, active, and strong-willed little guy. Watching them play together, talk, run, jump, and laugh is a miracle and joy that is unmatched in our lives.

- Amanda and Scott

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