Stress: 'I want to take every breath for them'
At their almost new, picture-perfect house in Zelienople, Dave and Diane Anthony feel strangely empty.
“It's twice now that I came home and when I left I was pregnant, and when I came back I wasn't pregnant and brought home no babies,” says Diane, who has taken a leave of absence from her job as manager of Thomasville Home Furnishings in Marshall Township.
The standstill in the babies' progress compounds their feelings of sadness and insecurity. Katelyn and Jacob's 1-month birthday arrives without clear signs they're out of danger.
They are hooked to ventilators. The machines breathe for them between 20 and 60 times per minute, faster than the average adult. The ventilators also tell doctors and nurses how the babies' lungs are changing from moment to moment.
As if they hadn't had enough, doctors tell Dave and Diane that Jacob needs heart surgery.
They have discovered a potentially harmful defect of a small vessel near his heart. It is a common problem known as patent ductus arteriosus, or PDA, that can push the cardiac muscles to work overtime, leading to congestive heart failure. It happens when a blood vessel called the ductus arteriosus, which helps to distribute oxygen from the mother to the baby's organs in the womb, remains open after birth.
This means extra blood can flow into Jacob's lungs, which can become overloaded. It also can put additional burden on his heart to pump this extra blood.
Katelyn developed the same problem, but she was fortunate. Doctors gave her three back-to-back courses of the medication indomethacin, an anti-inflammatory that causes the ductus vessel to narrow. It worked. Because of his intestinal infection, Jacob will not get the medicine. That means the only way to help him is with surgery to close the vessel.
“You want to see how much Mommy stays on her toes,” Diane tells him.
The surgery is performed right at West Penn and takes all of 20 minutes. Dr. David Lerberg, a cardiothoracic surgeon, makes a one-inch slit on the left side of Jacob's chest, just below the shoulder blade. Working between the baby's ribs, he pushes a metal clip over the outside of the ductus vessel. The clip, less than a quarter of an inch long, immediately stops the excess blood flow into Jacob's lungs.
The surgery is a success.
A few feet away, however, it is Katelyn who takes a turn for the worse. She becomes lethargic. Her oxygen saturation level drops.
All signs point to an infection. Doctors are unable to wait for blood culture results and immediately start pumping powerful drugs into her body.
The pressure takes a toll on Diane. In the past, she talked about the babies without choking up or dabbing her eyes. But the stress is getting to her. She looks haggard and tired. She is unable to stop the tears. Her life has become unrecognizable.
“I don't know how I'm doing it,” she says. “I want to take every breath for them.”
Diane vows to stay at the hospital and avoid the 40-mile car ride late at night. She wants to stay until Katelyn gets better, even if it means sleeping on a hard mattress in a room usually reserved for parents, but used to store broken rocking chairs.
“I'm not leaving until they get better,” she tells Dave curtly. “They might as well put up a sign out there that says ‘Anthony residence.'”
Always warm and approachable, Diane befriends the parents of other babies. She peppers them with questions. She makes a mental catalog of who's who and when they come and go. She becomes frustrated that her babies have been there longer than anyone else. She doesn't like it that some of the other parents seem withdrawn from their babies and don't seem to visit as often.
“Can you believe no one has visited this little guy over here like in three days?” she says, pointing to an incubator by the window.
Jacob is doing better than his sister. He lies face down, with his knees crunched up against his stomach, his head against a soft pad that's wrapped around him.
Diane daydreams about seeing her babies grow up. She craves taking them to school, cooking for them, being a family. She rests her face in her hand and closes her eyes.
“I can't wait to see my kids playing out in the mud,” she says. “Our little boy would probably be in overalls without a T-shirt, just his overalls and barefoot. And my sister keeps telling me that she can't wait to see Katelyn in a little pink frilly dress sitting in a mud puddle.”