Monday, March 17, 2014

Inova or Children's?

The trouble with Congenital Heart Defects (CHD) and genetic anomalies is that you're fearful about whether or not you're choosing the right medical care. I have nothing but love for the doctors, surgeons and nurses at Fairfax Inova. I had a wonderful birthing experience there when I had Dylan. But every time we visit, I just zero in on the frequent phrase, "one of the more severe forms of CHD" and I start to worry. So, after much thought, Ray I scheduled an appointment with the cardiologists at Children's National Medical Center in Washington, DC.

After reviewing the echocardiogram pictures, Dr. Donofrio said she sees what looks like a very VERY small pulmonary artery (PA) that didn't develop properly. And she also sees what appears to be an equally small patent ductus arteriosus (PDA). She also gave us some more insight on what to expect after he is born.

Best case scenario: After Micah is born, if his collateral arteries (the ones that formed in the absence of his main PA) are providing enough blood to his lungs and circulation looks good, then we can go home after a few days to fatten him up and prepare him for surgery 4-6 weeks later.

Not necessarily "worst" case scenario, but least favored scenario: If his circulation is poor then he can expect to have surgery within the first week of his life.

We also met with the nurse coordinator, Kami, and social worker, Heather, who told us about Washington Hospital Center's OB, Dr. Maungman. They both recommended we deliver there so Micah can be transported quickly to Children's - they're right across the street from each other in the same medical complex. They even have a connector bridge so that right after I give birth, Ray can run over to Children's to be with Micah while they examine his heart.

Heather took us on a tour of the Cardiac Intensive Care Unit. Each room is private with two "beds" so the parents can be with their heart baby 24/7. Inova puts their heart babies in the NICU with preemies and other sick babies - it's not specialized or private, and the parents can only coming during visiting hours. After the meeting, Ray and I decided Micah would receive the best post operative care at Children's. The only disadvantage about Children's is that its about an hour from our home whereas Inova is about 12 minutes away. I think we can deal with that :)

Having made our decision I feel so much better about the looming surgeries Micah will need.

Another update is that at the last ultrasound Micah's kidneys were measuring smaller than the previous visit! Finally a bit of good news. And I haven't gone into preterm labor and I'm almost 27 weeks! There are things to be thankful for!

I'm still waiting for that miracle though.