We had the meeting yesterday with the Cardiothoracic Surgeon, Dr. Philip Smith at Akron Childrens Hospital. He was really a nice guy and answered all of the questions I had for him. He went on to explain some things that I did not think about...like how much more advanced the surgeries have become and why there are so many babies alive now due to the surgeries. Not all babies are candidates for the surgeries and they have been able to determine inutero whether or not the baby will be a good candidate. So basically that means that mothers are now informed sooner and have more time to make decisions as to what they want to do.
Based on our echocardiogram...Hope is not a candidate for the surgeries; however, we are planning another one next week to see if that is still the case. There is no intra atrial communication, which means that her atria and aorta are closed, not just small. That was the saddest part of the whole meeting and I think Jerry and I both realized just how bad everything is right now. He indicated that on the spectrum of HLHS, Hope is on the 'bad' end of the spectrum...meaning if we were to have the surgeries performed, she probably would not be able to survive them. The realization and actually typing these words is just about killing me and my heart aches and feels so heavy right now. It is not the news we were hoping to receive.
I think we have also made a decision to carry Hope to term and let God take her on his own time. That way we will be able to donate any organs that are viable and also to have a memorial and funeral for her. I feel comfortable with that decision...although seeing her and knowing she will pass on will probably break my heart...I feel we are letting nature take its course, rather than making the decision to terminate the pregnancy early. I just hope Jerry will be OK with the decision. He is having a really hard time with it and I think he would be more comfortable with terminating the pregnancy now, rather than waiting. I really wish we did not have to make this decision. It has been so painful and I fear that the rest of my pregnancy will continue to be just as painful and I think that is why Jerry feels that if we terminate earlier, I will be able to grieve earlier and possibly move on.
Another poem that I feel is very relevant to how I feel right now:
My grief is like a river,
I have to let it flow,
But I myself determine,
Just where the banks will go.
Some days the current takes me
In waves of guilt and pain
But there are always quiet pools
Where I can rest again.
I crash on rocks of anger
My faith seems faint indeed
But there are other swimmers
Who know just what I need
And loving hands to hold me
When the waters are too swift
And someone kind to listen
When I just seem to drift
Grief's river is a process
Of relinquishing the past
By swimming in Hope's channels
I'll reach the shore at last
~Cynthia G. Kelley~
Based on our echocardiogram...Hope is not a candidate for the surgeries; however, we are planning another one next week to see if that is still the case. There is no intra atrial communication, which means that her atria and aorta are closed, not just small. That was the saddest part of the whole meeting and I think Jerry and I both realized just how bad everything is right now. He indicated that on the spectrum of HLHS, Hope is on the 'bad' end of the spectrum...meaning if we were to have the surgeries performed, she probably would not be able to survive them. The realization and actually typing these words is just about killing me and my heart aches and feels so heavy right now. It is not the news we were hoping to receive.
I think we have also made a decision to carry Hope to term and let God take her on his own time. That way we will be able to donate any organs that are viable and also to have a memorial and funeral for her. I feel comfortable with that decision...although seeing her and knowing she will pass on will probably break my heart...I feel we are letting nature take its course, rather than making the decision to terminate the pregnancy early. I just hope Jerry will be OK with the decision. He is having a really hard time with it and I think he would be more comfortable with terminating the pregnancy now, rather than waiting. I really wish we did not have to make this decision. It has been so painful and I fear that the rest of my pregnancy will continue to be just as painful and I think that is why Jerry feels that if we terminate earlier, I will be able to grieve earlier and possibly move on.
Another poem that I feel is very relevant to how I feel right now:
My grief is like a river,
I have to let it flow,
But I myself determine,
Just where the banks will go.
Some days the current takes me
In waves of guilt and pain
But there are always quiet pools
Where I can rest again.
I crash on rocks of anger
My faith seems faint indeed
But there are other swimmers
Who know just what I need
And loving hands to hold me
When the waters are too swift
And someone kind to listen
When I just seem to drift
Grief's river is a process
Of relinquishing the past
By swimming in Hope's channels
I'll reach the shore at last
~Cynthia G. Kelley~
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