I went to see Dr. Silber yesterday. I had an ultrasound and cried throughout the whole thing. I used to love having ultrasounds, but now I just equate them with pain and just plain unhappiness. I saw Hope's heart beating and knew that the only reason it is still beating is because she is inside of me. It really hit home yesterday that I am her lifeline and when she is born, she will not live. I really started thinking about medical termination while I was watching her on the ultrasound screen. I think I just cancelled out that idea because I never thought I would be able to do it...now I am really not so sure. I am beginning to think it will be harder on everyone if I carry her to term and then have to watch her die. I have 4 more months and it seems like an eternity. I will have to see her at every appointment and wonder why I am prolonging the inevitable. Right now it just doesn't seem fair to have to make this decision and it becomes harder and harder every day.
At the end of the ultrasound, the coordinator (Kristin) asked if I wanted to have the repeat amnio and include a micro-array...which basically looks at all genes from the amniotic fluid to see if there are any other issues. I decided to go ahead and have it done because I am really not sure whether or not I will continue with the pregnancy and want as much information as possible about what may have happened. The amnio didn't hurt at all and I was happy that I may be able to find out about her genetic makeup.
After the ultrasound I had a transfer of care appointment with Dr. Silber where she basically went over the records she received from Dr. Funk. While I was waiting for Dr. Silber, Kristin and I had a long time to talk about the different options. She knows how I feel about making sure I receive the ashes for Hope if I terminate and she is trying to find someone that will do that for me. I really want to make sure I have a memorial service or at least some form of rememberance in her honor.
After all the appointments, I had to drive home. It was a LONG drive home with a lot of thinking and a lot more crying. I just can't seem to stop crying and wondering if any decision I make will be the right decision. I know that if we decide to terminate, we will tell everyone that we lost Hope. I don't want or need the judgement from other people and it will actually be the truth. Once she is no longer inside of me, she will not live. It is really sad to write this and even more sad to think about.
I spent some time with Marilyn...she was nice enough to get up really early in the morning and come all the way out to Medina to pick up Paul and Jerry so I could go to my appointment. She has gone through terminations and I figured she would be the perfect person to talk to about everything that is going on. I know she really doesn't believe in terminating a pregnancy anymore, but I wanted to hear what she had to say. It was actually a bit disappointing because she made me feel guilty about possibly terminating the pregnancy. I really thought she would be the person to talk to about how I felt, but she really doesn't understand either. I know everyone is thinking a miracle can happen, but they are not there through the ultrasounds and the echocardiograms to see that her little heart is just not all there. If I thought there was even a possibility that it would miraculously grow all of its chambers, I wouldn't even consider terminating...but I know the truth and she will not miraculously grow her left ventricle.
When Jerry came home from work last night I talked with him about possibly terminating the pregnancy early. He again stressed that it is my decision and he will support me in whatever decision I make. He also said that he would fully understand me not being able to carry her to term and how heartbreaking it will be to let her go after spending 9 months with her inside of me. Even though he will not tell me exactly how he feels, I think it would be easier on all of us if we terminated early...rather than waiting for her to be born and then have to watch her die.
I spent the night reading "Our Heartbreaking Choices" (http://www.ourheartbreakingchoices.com/) and really felt a connection with many of the women in that book. Terminating for medical reasons is one of the hardest decisions anyone can make and it is not fair that anyone should have to make this decision. But, the book also gave me hope and it made me realize I am not alone. There are MANY women out there that have had to make this very personal decision.
A Mother's Love
A mother's love is something that starts right from conception
You form a bond with your baby full of love and deep affection
Before you even know it you've planned their entire future
It may be a little optimistic but it's only mother nature
But then one day you're told the news you never want to hear
'Your baby's not forming right', it's every mothers fear
So now your future life has to be tragically torn apart
To be replaced by grief and a pain that fills your heart
You'll often sit and wonder what is was that you did wrong
To be denied the life of the child you'd carried for so long
All those medical workds race around your head again
But the outcome of it was if she lived she'd suffer pain
And so you decided that you had to let her go
You did what was best for her because you really love her so
Even though she's gone and you're no longer a mother to be
Just remember it was your love that helped to set her free
This poem has really helped me understand how painful this decision is and how much I would like anything other than having to make this decision. I know any decision I make will be made out of love for Hope, but it is still hard to contemplate this decision and come to peace with it in my heart.