Tuesday, April 30, 2013

Baby Drake Update


Kiel and I are so overwhelming grateful to live where we do. Not only do we have one incredible facility that offers treatment for our little man's condition, but we have two... One of which is the Children's Hospital of Philadelphia. 

A close friend encouraged me to check out CHOP's website, and to also consider touring the facility. Being the computer junkie that I am, I immediately hopped online and gave the website a look. It offered SO much information, and I figured it couldn't hurt to shoot them an e-mail. To my surprise, one of their nursing coordinators called me back within 24 hours. She offered me an immense amount of information and guidance, and within one phone conversation I felt solid in my decision to meet with the CHOP team. 

We headed north today with high hopes. We had a repeat fetal echocardiogram, and then met with a cardiologist, nursing coordinator, and social worker all at once. The diagnosis remains the same, baby boy has tricuspid valve atresia. The cardiologist went over the course of fetal monitoring, delivery, and surgical procedures. I don't know if it was the physician, or the fact that we already had some knowledge under our belts, but things all made a little more sense this second time around. Next, the social worker offered us emotional support, and explained the transition process to us in detail. Finally, the nursing coordinator took us on a tour of the special delivery unit (where I can actually deliver my son and stay just 20 ft away from him after his birth... a miracle, honestly), the CICU, and the cardiac step-down unit. Let me tell you, this facility is no joke. 

So how is baby boy? Despite his little heart, he is doing pretty darn great in there. He is about one pound already, and all his other organs seem to be growing well. His latest echocardiogram shows that he may not need the first surgery after all... he actually may not even need to be on prostaglandins. Kiel and I were both so relieved to hear this news. It was so wonderful to finally be given some positive information. With that being said, things are still apt to change, and we are taking everything one day at a time. 

If I've learned anything, it is that worrying will not change the outcome. We will not let this one thing take away from the joyous experience of parenthood. I realize how important it is to remain positive, trust in our medical team, and to focus on my health so that I can carry my little guy to term. 

We will continue to reach out to all of our wonderful support system. And of course, we will continue to pray. Our little man could use all the prayers he can get... so if you don't mind, send some prayers our way!