The short of it: Evan had a seizure early this morning and several more throughout the day.  They are the result of a stroke he had some time ago but not sure when.  He is comfortable, sleeping, and stable.  His brain activity is being monitored continuously for 24-48 hours.  He is NPO again (removed from […]

This morning Evan had a chest x-ray and everything looks great.  He still has a wet-sounding cough occasionally but it must be residual congestion and is not indicative of any illness.  Good news. Evan also had another EKG and visit from his electrophysiologist.  They had originally turned his pacemaker down to 80, but Evan was […]

The past few days have been a little rougher for us. Both Bill and I are beginning to feel the strain of doing this routine over and over.  It’s not like we haven’t been enormously blessed and have had such a smooth experience thus far, but we are entering a lull and need to get […]

Short and sweet – We just got briefed on Evan’s progress and so far everything is looking great!  Big boy is doing awesome and continues to kick ass in the OR! Dr. Hirsch is now working on installing the BT shunt that will connect the subclavian artery to his pulmonary atery.  She is also going […]

  We had our second appointment at the University of Michigan on June 10th. This appointment put little Evan at 34 weeks and 5 days. We started the day off with a fetal echocardiogram with Jane. Evan was awake and ready to play. He was rolling over and just moving a lot in general making […]

Last Thursday we had our all-day appointment at U of M.  We weren’t sure what to expect but hoped to come away with a better understanding of the process we are going through and the facility that will become our second home.  It didn’t take too long to get there – about 1.5 hours – […]

I created a new page to describe the differences between a normal heart and one like Evan’s… you can see it under the menu item Evan’s Condition or by clicking here.  

We went to the cardiologist today and were officially diagnosed (previous was best guess by radiologist, OB, etc) Evan does indeed have a congenital heart defect but it’s not hypoplastic left heart syndrome. He has a much more rare (1 in 25,000) defect called Tricuspid Atresia with Left Transposition. It’s two parts, 1) There is […]