Preemie with congenital heart defectsWhen I was 27 weeks pregnant, my OB/GYN had me admitted to the hospital due preeclampsia. While having an ultrasound done, the technician became very quiet and wouldn't tell me what was going on. After another ultrasound, this one done by a fetal cardiologist, my husband and I were told that our baby had a severe heart defect, Interrupted Aortic Arch (IAA), as well as a large VSD and smaller ASD. We were transferred by ambulance to hospital that could handle the surgery shortly after birth without having to transport a critically ill baby. I was there just over the weekend before the umbilical cord reversed flow and Max was born via emergency c-section 3 months early. He was only 1 pound 12 oz and needed to wait until he was term age before surgery, so we spent 3 months and a week in the NICU before his IAA and VSD repair. Being that small with such a serious heart condition, Max had expected highs and lows before and after surgery. We ended up being able to go home after 5 months in the hospital, only to find out he needed another surgery to help with subaortic stenosis 4 months later. We are currently about 2 weeks out from that surgery and recovery is again going not very smoothly, but he is making slow progress.
At home Max is such a happy baby and is developing/growing well (so much better than expected). I am thankful for a skilled and caring surgical team that work their hardest (because Max makes them :) ) to keep Max on a good track for growing bigger and older. My husband and I take care of him every day (taking turns to go into work) and handle his nursing care (he is on a small amount of oxygen at home, eats primarily via NG tube, and gets medications 7 times a day--all before this most recent surgery). Despite all of his hurdles, Max is really just a normal, super cute, sweet baby. I can't wait to see him grow older.