Our appt with the new cardiologist today was excellent. He is an incredibly smart, attentive, thorough, and optimistic doctor and we couldnt have been more pleased with him. He explained everything very carefully to us so we would fully understand Noahs heart. His heart is in no way, shape, or form normal. When his heart was forming it did not develop like a normal fetal heart --- the right side of his heart is essentially over developed and the left is under developed... the middle of his heart where there are typically 2 valves separating the atria from the ventricles is also abnormal - Noah only has one common valve (this is a VERY simplistic way to put it). While in the womb he is safe and protected because I am oxygenating for him but when he becomes his own little being his heart will not be able to adequately deliver oxygenated blood to his body and his lungs will receive too much blood. This will require multiple open heart surgeries at different stages of his very young life to reroute his blood flow so that his vasculature functions normally without actually having normal cardiac anatomy. This is still big, scary news BUT it is not exactly the diagnosis we were originally given and because he has excellent great vessels (aorta and pulmonary artery) his 1st surgery (the riskiest) will be less complicated than originally anticipated. The other WONDERFUL news is that there is a chance that I will not have to deliver him outside of the state. Initially we were told Noah would have to be delivered at a speciality hospital and he would require his 1st surgery within days of birth. This may not be the case. I may be able to deliver him in BR and it may be 1-2 months after birth (with medical management) before he requires the 1st surgery (if he requires it at all.) This is a huge change but is completely dependent on how his heart continues to develop throughout the remainder of my pregnancy and of course how well he does once he is born. We have chosen Boston Childrens as the hospital where he will have his surgeries performed and there is still a chance that I may have to move up to Boston 3 weeks before my anticipated delivery to ensure his safety upon arrival. We also should not have to be in Boston for longer than 4-6 weeks post surgery which is far different from our previous understanding (us living out of state for many months). There are still many unknowns and this will not be an easy road for any of us but GOD IS LISTENING and HE IS MOVING on our behalf. Please continue to pray that as Noah grows his heart continues to change for the better! God can make miracles happen!!! Our doctor looked me in the eyes and said This kid is going to be just fine... its going to take some work but he is going to be fine. I can rest my head on that tonight. Thank you all for caring and for your prayers. They mean so much to us. #prayersforNoah
Posted on: Wed, 30 Jul 2014 01:00:13 +0000
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