The third in a six-part series chronicling the birth of Michelle and Dennis Teravainen’s second child, August, who was born with Down’s syndrome.
Since Monday afternoon, we’ve been in a whirlwind. Until 4 p.m. that day, we were under the impression that Gus’ heart was basically okay. But his second echocardiogram showed a change from his original one over the weekend.
At about 7, an ambulance took Gus in a tiny box on a stretcher from the neonatal ICU at Beth Israel Deaconess Medical Center in Boston to the neonatal ICU at Children’s Hospital across the street. On Tuesday, he moved up one floor to the cardiac ICU. He is stable and resting comfortably there as of Wednesday night.
At the risk of butchering the proper medical terms and a technically accurate summary of his status, here’s my understanding: A duct in G-man’s heart was supposed to close when he took his first breath, but it stayed open. A portion of his aorta (probably defective already) began narrowing as the duct stayed open. Meanwhile, pressure increased in his lungs, which caused Gus to breathe more often and more rapidly, which further worsened the pressure.
The doctors are medicating Gus and intentionally keeping the duct open, to prevent increased pressure in his lungs. He’s on an IV for food and hydration. He’s got tubes, wires, lights, and buttons connecting different body parts to machines making all sorts of noises.
He will almost certainly go to surgery to correct the narrowing in his aorta and relieve the lung pressure either tomorrow or Friday. Unbelievably, no one we’ve spoken to knows when exactly his operation will take place—but that is literally my only complaint with the hospital. (Well, except the traffic situation leaving the parking lot—can someone please sort that out?)
To back up, Shell checked out of Beth Israel on Tuesday morning. We spent all day at Children’s NICU bonding with Gus and meeting with various medical folks. The news kept getting worse:
Hi, I’m an endocrinologist. Gus has hypothyroidism. We need to give him a pill every day for the rest of his life.
Much more seriously, the cardiologist was concerned that Gus’ lung pressure was worsening. They wanted consent to transfer him to the cardiac unit and put him on a ventilator. The punches didn’t stop that day.
We went home that evening, which was difficult to say the least. (Shell has made about ninety percent of Gus’ caretakers cry. It’s her test to make sure they care, I think.)
We needed to get home to change clothes, shower, sleep in our beds, but most of all, to see our little Greta. She needed us and we needed her. She brightened our moods immediately. I think Greta’s bath went a little long that night. We had an impromptu dance party before bed. It was therapeutic for all.
Today, we spent the day at Children’s cardiac ICU. The staff there (and everywhere else for that matter) is absolutely wonderful. Most importantly, Gus looked great. He just seemed better. Prayers are being answered, I swear.
Though we could not feed him, August’s mom got to hold him. I kissed him whenever I could. Finally, it was a good day.
Before I sign off, I’d like to share something special that happened today. We asked to meet with a chaplain when we arrived. Before Gus was born, the wife and I agreed that we would do something for both of our kids at the same time, which would be analogous to a baptism or christening—but done by us at our home in our own way in the company of family and friends.
We hadn’t hashed out the details, but in light of the unpredictability of Gus’ impending heart surgery, we wanted to improvise a little something to recognize both the little man’s arrival and the immediate challenge he faces.
Not long after we got settled in the room, a woman stopped by and introduced herself as one of the staff chaplains. We explained our spiritual beliefs as well as we could in the ten minutes we were together. We explained Gus’ situation and the work-in-progress we had originally planned to do at home. She left to go to her office and returned within thirty minutes. She came back with a proposed outline. We added a few tweaks.
And just like that, we experienced a beautifully simple meditation of sorts together. We forgot about everything except how much we love our son in those moments. It was perfect.