Fight Like a Preemie; Fight Like Theo

November 19, 2018

Given that my husband is stubborn and I’m tenacious, it did not come as a surprise that Theo, our ex-27 week preemie, came out equally strong-willed and spirited. And it was that stubbornness that saved him.

From the beginning Theo had it rough. He had jaundice which doubled as an early Halloween costume. Then a PDA ligation on his one-month birthday, just in time for Thanksgiving. Immediately after that surgery he yanked his breathing tube out in front of a room full of doctors and nurses. After that he contracted a super-bug that required us to wear isolation gowns and masks.

The next few weeks brought even more strife. Theo got pneumonia. Then one of his lungs collapsed. He got even sicker. We couldn’t hold him. The doctors were trying everything they could think of. Switching ventilators. Keeping him in a constant sleep state to allow all of his energy to getting better. New medication combos.

Nothing was working. Our primary nurse, Josie, reminded us, “The stubborn babies do the best. Theo is full of fight. He’s not giving up. Neither should you.”

Then we got the call early one December morning. The call no parent with child in the hospital ever wants to get. Theo’s lungs were barely functioning and weren’t removing carbon dioxide. We needed to get to the hospital immediately because it didn’t look like he’d survive. When I arrived at the NICU a short time later, my husband was holding the attending neonatologist’s hand and crying. Respiratory technicians were using a bag-valve-mask (BVM) ventilation to provide him with oxygen.

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Theo, 6 weeks, after surviving the worst.

Dr. C., who’d been with us the week Theo was born, offered a last-ditch solution to put him back on his original ventilator. It was unheard of. It shouldn’t work. It wasn’t the powerhouse one he’d been using since he got the super-bug.

We agreed to try it, after all there were no other options. I made arrangements to have Theo baptized in case it didn’t work. We called our parents to come visit one last time.

And then we waited.

Less than 24 hours later, Theo’s lungs were expelling carbon dioxide like an old pro. He opened his eyes for the first time in 10 days. Our baby was back.

Dr. C. called Theo a miracle baby, and I agree. But I also think what nurse Josie said played into it, too. We didn’t give up on Theo. Neither did Dr. C, the respriatory therapists, or nurses. Most importantly, Theo didn’t give up on himself.

Theo, aka Spiderman, age 4

Within a week Theo was off the ventilator and on a CPAP machine. Two days later he was on room air. He didn’t need to be in an incubator anymore. We could dress him. We could hold him. He still had another 130 days before he would get to come home with us. His lungs needed time to grow new tissue. But now that Theo had survived the unimaginable, I knew he could take on anything.

Theo’s four now and even more stubborn than his early days. He doesn’t stop until he’s solved a puzzle or out-negotiated us for a new toy. His strong will reminds me how lucky we are to have him, even when we’re exhausted and he’s refusing to go to bed.

If you know a preemie in the NICU, fight for them. Remember how strong a two-pound baby really is.

Fight like a preemie. Fight like Theo did.




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