8/ Lorelai’s Surgery Story

My daughter was diagnosed with CPAM at 22wks gestation with a CVR of 1.9 and her heart shifted. I had weekly ultrasounds until 34 weeks when they couldn’t see the mass any longer. Our last CVR measurement was 0.7; her mass never grew thankfully. Then I had twice weekly NST (non-stress) tests until I was induced at 39wks. 

She was born asymptomatic but was monitored by the NICU for an hour, which is typical for lung malformation babies. The NICU team would come in periodically to check on her throughout our stay. She had an X-ray a few hours after birth and they didn’t see the CPAM. She had another X-ray at 3 months and it was still not seen. Then we went in for the CT scan at 6 months. That’s when they saw the lung malformation. It looked like a CPAM/BPS hybrid with a feeder vessel coming from the aorta. Surgery was scheduled for August 2025.

She had surgery at Kaiser Permanente Hospital in Fontana, CA. It went well but the first day was rough. Luckily, our hospital managed her pain well and listened to us as parents. She was on morphine for a day and a half. Then, just Tylenol round the clock every 4hrs. We were told our stay would be 3-5 days but she ended up staying for 9 days. Day 1 into day 2, she lost a lot of fluid and her hemoglobin was pretty low. When they took blood again a few hours later her levels had dropped too low so she needed a blood transfusion. 

Day 3 we tried the water seal on the chest tube. That night, her lung collapsed. So, we needed to go back to suction. Because the lung collapsed, our hospital’s policy was to wait 3 days to try again. 

Day 6, we tried the water seal again. And it was successful! So the next day we did the clamp. Well, her next X-ray showed a small air leak so we had to go back on suction again. 

Day 8, we clamped again. Then day 9, we had our morning X-ray (she got an X-ray every day of her stay while the chest tube was in). The X-ray showed no air leak or pneumothorax. So they removed the chest tube at 9am. They took another X-ray at 12 and cleared her for discharge!