It has been 14 very long weeks since our original diagnosis of Ebsteins Anomaly at our 20 week ultrasound. We had our 5th echo at Cincinnati Children's on Tuesday & our diagnosis is now severe pulmonary valve stenosis with an ebstnoid like tricuspid valve. We will not have a definite diagnosis until he is born and we can have an echo done directly on him. The plan is to continue with twice weekly non stress test and a weekly ultra sounds to measure heart to chest circumference and check to check for extra fluid. We are still failing more NST then we are passing but he is moving & doing everything he should be doing at this stage in the game. There is no reason why we will not go full term at this point.
We also had an fetal MRI to evaluate lung structure and lung volume. I have been waiting to write an update until we got the results of that. It showed that lung volumes are in the mid range (87 mL) for our gestational range which is great news. The OB was very excited about this number. I don't really know what it means except that is the total amount of volume his lungs can currently hold. I would have been happier with a higher number but I will settle for average. Noah is all about average. He has been in the average range for everything but is heart :) Which has remained stable!!!!
I have had a bad last week. I am completely overwhelmed by everything that is going on. From the older kids getting ready to go back to school in a month. The thought of having a baby in intensive care & trying to balance everything. I know that God is not going to give me more then I can handle but..... I also know that life is not fair but..... When I see all of these people out there who don't want their kids or cry because they don't want to be pregnant anymore it makes me sick. I will do anything in the world to keep this sweet little boy inside of me for at least another 2 weeks. The bigger he is the better Noah will do. I just wish the we had a plan. That I would know what to expect not that I am going to give birth and I wont be able to see my baby for 24 hours. I am his momma and he needs me. I need him I need to keep him safe & protect him. Not that I don't trust my amazing husband but..... I am his momma. If it wasn't for Gary I don't know how I would have every made it through the last 14 weeks. He is the most supportive caring loving man in the entire world. He is my rock.
I want step 1,2,3,4 and so on and I don't have this. It is very hard to accept that but I know that it is in God's plans to work out that way. Maybe it is his way of telling me I need to let go and let him have control of the situation. I am trying very hard....very very hard. It is easier said then done most days though.
We follow up with both my OB and the Cardiologist on 8/2 :) We will have made it to 37 weeks then!!!!
We also had an fetal MRI to evaluate lung structure and lung volume. I have been waiting to write an update until we got the results of that. It showed that lung volumes are in the mid range (87 mL) for our gestational range which is great news. The OB was very excited about this number. I don't really know what it means except that is the total amount of volume his lungs can currently hold. I would have been happier with a higher number but I will settle for average. Noah is all about average. He has been in the average range for everything but is heart :) Which has remained stable!!!!
I have had a bad last week. I am completely overwhelmed by everything that is going on. From the older kids getting ready to go back to school in a month. The thought of having a baby in intensive care & trying to balance everything. I know that God is not going to give me more then I can handle but..... I also know that life is not fair but..... When I see all of these people out there who don't want their kids or cry because they don't want to be pregnant anymore it makes me sick. I will do anything in the world to keep this sweet little boy inside of me for at least another 2 weeks. The bigger he is the better Noah will do. I just wish the we had a plan. That I would know what to expect not that I am going to give birth and I wont be able to see my baby for 24 hours. I am his momma and he needs me. I need him I need to keep him safe & protect him. Not that I don't trust my amazing husband but..... I am his momma. If it wasn't for Gary I don't know how I would have every made it through the last 14 weeks. He is the most supportive caring loving man in the entire world. He is my rock.
I want step 1,2,3,4 and so on and I don't have this. It is very hard to accept that but I know that it is in God's plans to work out that way. Maybe it is his way of telling me I need to let go and let him have control of the situation. I am trying very hard....very very hard. It is easier said then done most days though.
We follow up with both my OB and the Cardiologist on 8/2 :) We will have made it to 37 weeks then!!!!
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