4/15/92 (Day 151) — Children’s Memorial Day 3

These are the words you want to associate with a small baby: home, nursing, blankies, binkies, snuggling, lullabies. The words you don't want associated with your baby are: anesthesia, incision accomplished with a saw, harvested, defibrillated, ventilated, cardiopulmonary bypass. Molly weighed just about five pounds when she underwent this major surgery. The doctors told us her heart was about the size of a walnut. We were naive, I know. We had been in crisis for so long and Isaac and Molly had come so far, that it really didn't occur to me that she would die during heart surgery. But, in fact, she did die. They had to stop her heart to repair it and then restart it again. "Normal" parents would have been out of their minds over this kind of surgery. I won't say that it was easy, but it did have a feeling of business as usual, if your "usual" is a surrealist painting or a tsunami or a black hole. That was our usual. It had been for a long time and it would be for a long time to come.

Record of Operation

from the surgeons at Children’s Memorial Hospital

Pre-operative diagnosis: prematurity, large atrial septal defect, large patent ductus arteriosus with chronic lung disease.

Name of operation: Pericardial patch closure of atrial septal defect and ligation of patent ductus arteriosus.

Indications: The patient was in severe congestive heart failure with echocardiographic evidence of large left to right shunt through a very large atrial septal defect. The patient also has failure to thrive.

Findings: There was a large ostium secundum atrial septal defect with extension to the inferior vena cava without a ridge near there.

Technique: After the patient was placed in a comfortable supine position, she was prepped and draped in the usual manner with betadine anaesthesia. A midline incision was made and the median sternotomy was accomplished with a saw. A pericardial patch was then harvested. Aortobicaval cardiopulmonary bypass was instituted with mild hypothermia after systemic hepariniazation (3mg/kg). The patent ductus arteriosus was dissected and ligated with 0 silk. The heart was fibrillated and the right atrium was opened and the above mentioned large atrial septal defect was encountered. The veins were draining normally. The pericardial patch was then sutured in place thereby closing the atrial septal defect without difficulty. Air maneuvers were accomplished to remove the air from the left atrium. The atriotomy was then closed in two layers and all the air maneuvers again were accomplished. The patient was then defibrillated with a vent in the ascending aorta. The patient was ventilated and weaned from cardiopulmonary bypass without difficulty and the vent in the ascending aorta was then closed. The protamine was given, the patient was decannulated and all bleeding was stopped with electrocautery. A chest tube was placed in the mediastinum and the patient was closed in layers and returned to the Intensive Care Unit in satisfactory condition.

Home nursing notes (Isaac):

Eat 12 midnight to 1:00 a.m. — 25 ccs

3 – 4 a.m. — 25 ccs

6-7 a.m. — 30 ccs

Had one large light brown stool. Received Mylicon at 5:00 a.m.. Had his 8:00 a.m. meds. Slept on and off throughout night. — Kathy

Day — Ike had a wonderful day. He ate well every two hours and slept in between! — Alisa