It is 4:30 pm on Monday, and I am sitting here next to Erin watching her sleep. It has really been a rollercoaster of emotions since she and I arrived at Children's on Saturday evening. Upon arrival, a cardiac fellow did another ultrasound on her, in order to get a good idea of what they were dealing with in regards to her Ebstein's. During pregnancy, Erin proved difficult to diagnose via ultrasound, as she was a very active baby. This ultrasound performed directly on her was no different! She was so active that they finally gave her a slight dose of a sedative to calm her down in order to get clear pictures. The Dr's viewpoint was that the Ebstein's was more severe than we thought, and that surgery was definitely the immediate option. However, they wanted another ultrasound in the am to get a second opinion. I stayed with the baby until very late, and then needed to go home and sleep.
Sunday, Erin had another ultrasound which showed a better picture than Saturday's ultrasound. The decision was made to discuss her case at the Dr.'s conference that is held each Monday afternoon. One potential outcome is that they might hold off on surgery to see how well the pulmonary artery might perform. Right now, she is on prostaglandins, a drug which ensures sufficient blood flow between the pulmonary and aortic artery. If she stays stable and surgery is not recommended immediately, they may try to wean her off the drug to see how she does. Best case would be to send her home in the near future and wait until she is older before the surgery is performed. Worst case is do the surgery now, and see. We are in waiting mode.
Erin is such a beautiful, sweet baby. She is quiet, sleeping a great deal, and not very fussy. When she does fuss, it is because she is being poked and prodded. She fusses just enough to register her displeasure, and then stops and endures the treatment. She is amazing in every sense of the word, and yes, I have turned into one of those idiotic over the top fathers who think that the sun, moon, and stars all revolve around my daughter. Last week, I wouldn't have understood. Today, it is my life. Life is such a long, strange journey.
As a side note, Children's Memorial is next to John Barleycorn, a long-standing Chicago bar. Coincidentally, it is where Sheila and I met on blind date. Last night, we took a dinner break and went to JB's for a quick bite of bar food and a beer. How strange to think 11 years ago we were there trying to figure each other out, and now we are there pondering our daughter's future.
Sunday, Erin had another ultrasound which showed a better picture than Saturday's ultrasound. The decision was made to discuss her case at the Dr.'s conference that is held each Monday afternoon. One potential outcome is that they might hold off on surgery to see how well the pulmonary artery might perform. Right now, she is on prostaglandins, a drug which ensures sufficient blood flow between the pulmonary and aortic artery. If she stays stable and surgery is not recommended immediately, they may try to wean her off the drug to see how she does. Best case would be to send her home in the near future and wait until she is older before the surgery is performed. Worst case is do the surgery now, and see. We are in waiting mode.
Erin is such a beautiful, sweet baby. She is quiet, sleeping a great deal, and not very fussy. When she does fuss, it is because she is being poked and prodded. She fusses just enough to register her displeasure, and then stops and endures the treatment. She is amazing in every sense of the word, and yes, I have turned into one of those idiotic over the top fathers who think that the sun, moon, and stars all revolve around my daughter. Last week, I wouldn't have understood. Today, it is my life. Life is such a long, strange journey.
As a side note, Children's Memorial is next to John Barleycorn, a long-standing Chicago bar. Coincidentally, it is where Sheila and I met on blind date. Last night, we took a dinner break and went to JB's for a quick bite of bar food and a beer. How strange to think 11 years ago we were there trying to figure each other out, and now we are there pondering our daughter's future.
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