Ultrasound before birth showed urine back up in both kidneys, left more than right. Hydronephrosis.
Born on 9th, open heart surgery to correct TAPVR on the 15th.
Confirmed 22q13.3 syndrome few weeks later.
Went back for echo check up of the heart, showed scarring in the pulmonary vein. Dr. Burg thought had to do another open heart surgery on the scarred vein. Didn’t have to.
Lungs very not clear, coughing really bad. Not whooping cough, pertussis. Not able to keep any formula down. Had to bring her back in emergency.
Very low muscle tone, very floppy. Not very steady eye contact, still wanders a lot. Has not turned over on her stomach by herself
Chest caved in just a little bit.
Kidney’s still holding urine.
Pulmonary hypertension. Pulmonary veins may have a lot of restriction issues.
Staphh infection of the airways / bronchial tube. Lungs had samples of some blood, not bleeding lungs though.
Lungs filled with abnormal amount of fluids.
22q13.3 syndrome could all be relating the kidneys, heart, and lungs together.
On steroids, antibiotics, albuterol, and other meds.
Just started wearing ABI vest, which thumps against chest to clear out lungs. Treatment is 4 to 5 times a day.
Today, just did X-Ray of chest and lungs and ultrasound of kidneys and abdomen, waiting for results.