Finally getting around to posting. Here's a shortish version of ds's story. Almost immediately after birth (at home) he started having some issues with nursing--he would cry when offered the breast, and it was really hard to get him to eat, especially at night. He was also very sweaty, and grunted when he exhaled. But his dr said nothing about the breathing at his 2 wk appt, so we figured it was just a variation of normal. He had an all day nursing strike at about 3 wks, but seemed to make up for it by nursing almost constantly the next day.
At 4 weeks, he had not gained any weight, and the dr said it was our fault, that "breastfeeding was killing our baby." A visit to a LC that afternoon showed that he took in less than an ounce in a nursing session, and she felt there was probably something medical underlying his nursing difficulties. So we switched to a new pediatrician who immediately noted his rapid, grunting breathing and became very concerned at his low blood oxygen saturation. Ds was rushed to the emergency room via ambulance, to be stabilized before a transport team took him to Children’s Hospital. It turned out there were two cardiac defects: a narrowing (coarctation) of the aorta, and a ventricular septal defect (VSD). The doctors chose to only repair the coarc, because it could be done through the side, without open heart surgery, and the VSD was minor enough that it might resolve on its own. He had surgery at exactly one month old, with 12 days spent in the cardiac ICU at CHOP. He was discharged, but we were in and out twice more that month, as his eating still did not improve so he was admitted again right after Christmas to get a feeding tube.
His heart did very well for a long time. Just recently, at about 18 mo, his cardiologist was not happy with the pressures in his heart as measured on echo. So she wants him to have a cath to measure directly--which is supposed to happen in the next month, before our new baby is born
: but they still haven't called to schedule. If that doesn't look so good, we're looking at OHS sometime to close his VSD.