Virginia's Cleveland Clinic Appointment Schedule
Tuesday, July 8, 2003
- 9:40 am
- Radiology - Chest X-ray
- 10:15 am
- Pediatric Cardiology - Routine Lab Visit
- 10:30 am
- Pediatric Cardiology - Echocardiogram
- 11:15 am
- Pediatric Cardiology - Electrocardiogram
- 11:30 am
- Pediatric Cardiology - Dr. Geoffrey Rosenthal Office Visit
- 12:00 pm
- Pediatric Cardiothoracic - Dr. Roger Mee Office Visit
Wednesday, July 9, 2003
Hospital admission for surgery
Virginia has a dentist appointment at 2:30 in the afternoon on Wednesday, June 9, 2003 to make sure that she has no active dental infections.
I found out that even though The Cleveland Clinic accepts my insurance plan, the insurance will only pay 50% if I don’t get Virginia’s procedure pre-certified at least SEVEN days in advance. I’ll be making that call tomorrow, I guess.
Installment 2 of the Oft-Requested History of Virginia =)
I called my husband and told him we needed to go to the OB’s office and speak with a pediatric cardiologist. Mike met me there and we were ushered into a small room where we were introduced to the PC. He said that he had reviewed the tapes and that our baby had a serious heart problem. We asked exactly what was wrong and were told the baby had Tetralogy of Fallot with an absent pulmonary valve. He explained that ToF by itself is generally corrected by surgery after birth, but that ToF without a pulmonary valve was a fatal situation. The OB said we needed to know about this right now, in case we wanted to terminate the pregnancy. If we wanted to do that, we’d have to travel out of state, as I was now 21 weeks along. We were given time alone in the office to “think about” our decision.
There wasn’t a lot of talking after the doctors left. I remember staring out the window. I couldn’t believe this was happening to us. The baby started kicking me. We had our answer.
When the doctors returned, I asked what would happen if we didn’t choose to end the pregnancy. The PC said the baby would most likely die in utero. I told them then that’s what would have to happen, because I didn’t have the authority to end someone else’s life. Both doctors seemed saddened by our decision. The OB said I would need more frequent monitoring to check the baby’s status, and the PC said he would schedule for us an appointment with one of the pediatric CT surgeons.
I had an amniocentesis performed to check for genetic problems and we found out we were having a girl. We picked out the name Virginia and set about getting ready for what might happen. I read up on congenital heart defects. I was sad to think that I would have to tell my daughter that her new baby sister had gone to heaven before she ever came home.
At each OB visit, the doctor was amazed that the baby was growing and doing well. We met with the surgeon and he formulated a plan of action. He said that when the baby was born, she would be taken away for immediate surgery. There would be two teams of surgical specialists at the ready, and everyone would hope for the best.
Finally, the Big Day came. On September 6, 1994, we went to the hospital as I was in labor. There was a large crowd in the birthing room, but with all the medication I’d been given, I didn’t notice. When Virginia was born in the early afternoon, she wasn’t breathing. After she was resuscitated, they took her vital signs. She was a full-term baby, weighing nine pounds, six ounces and measuring 19.5 inches long. The doctors took her away and Mike followed them. After further testing, it was determined that Virginia had an absent pulmonary valve and an atrial septal defect. While this condition was serious, it did not warrant immediate intervention.
Virginia was kept in the Neonatal Intensive Care Unit for nine days to make sure she was stable enough to go home with us. She was the largest baby there, and there was a bit of a scramble to find her a little shirt to wear. They gave us a very nice handmade quilt to keep, and a prescription for liquid Digoxin. She would also have her own pediatric cardiologist to see regularly.
Our journey had only just begun...
