Ada’s Long Journey Home

On October 9, 2025, our daughter Ada was born at 25 weeks and 1 day after a placental abruption. She weighed 1 pound, 5 ounces.

Ada was diagnosed with TEF/EA, duodenal atresia, malrotation, a missing rib, dextrocardia/dextraposition, and diaphragmatic eventration. She spent her first months fighting to grow and survive, including 44 days intubated and months dependent on IV nutrition.

In February, after months of waiting for her to become stable enough, Ada underwent major surgeries to repair her TEF/EA and duodenal atresia and correct her malrotation. Eventually, she reached full feeds through her G-tube.

But her biggest battle has been her lungs.

Ada developed severe BPD and pulmonary hypertension and has required prolonged ventilator support, multiple pulmonary hypertension medications, and periods of extremely high oxygen and nitric oxide support. After months of trying to find a way forward, we made the heartbreaking decision that a tracheostomy would give her the best chance at long-term stability.

On July 9, 2026—after nine months in the NICU—Ada received her trach.

The road since then hasn’t been easy. There have been complications, infections, scary respiratory events, and setbacks. She is currently recovering from rhinovirus and a UTI, and her pulmonary hypertension has recently worsened again.

But there have been beautiful victories, too.

Ada has started waking up more, sitting in her chair, playing on her mat, wearing clothes, increasing her feeds, and slowly coming off some of her medications. After spending nearly her entire life inside a hospital, she even got to go outside for the first time.

We have learned to celebrate things other families might take for granted.

Ada has now spent more than 300 days in the NICU. We don’t know exactly when she will come home, but we know what we’re fighting for.

Home.

After everything she has endured, we want our daughter to experience the ordinary childhood she has fought so hard to reach.