We were surprised to find out we were having twins. At our routine 22-week ultrasound, we were told that Carson had a mass on his neck, and were referred to the St. Louis Fetal Care Institute (FCI). The FCI team was awesome. After a lot of testing, they told us the “growth” was most likely a cervical teratoma (a tumor). Although the news was devastating, we immediately felt like we were in good hands and by the end of our prenatal care, we practically felt like family!
At 31 weeks, my husband and I relocated to St. Louis to be closer to the specialists. I was eventually admitted to SSM St. Mary’s Health Center. I delivered at 33 weeks at Cardinal Glennon in an operating room filled with more than 40 medical professionals. After planning and rehearsing, we were pleased when we heard that it could not have gone better, but our journey had just begun.
Both boys, Carson and Kellen, were admitted to the NICU. It truly was a journey; there were good days and bad, smiles and laughter, but also many tears. But the most comforting part was that we developed relationships with the staff and knew that we were in the best place
for our children.
Kellen had a fairly uneventful stay and was discharged after about a month. Many people didn’t think Carson would make it, but he
proved them wrong. He survived a 10-hour surgery to remove the tumor (which was more
than two pounds, about a 1/3 of his total body weight) at three days old. He was placed on
ECMO (a heart and lung bypass machine) and got a tracheostomy. The first two weeks were pretty “touch and go,” but he surprised us all. Carson spent his first Thanksgiving, Christmas and Valentine’s Day in the NICU. But we were blessed with some of the best nurses who helped us document their first holidays and milestones.
Carson was discharged with just supplemental
oxygen, a tracheostomy and a G-tube for nutrition. Carson no longer needs oxygen, and loves playing with his brother. Their favorite place to be is outside doing all the things little boys like to do! We are so thankful for the care we received in the NICU and probably most thankful for how well we were taught to care for Carson and all his extra medical needs!
- Liz Clark, Carson and Kellen’s Mom