We went to the Specialist today and thought I was going for an actual appointment that might shed some more light on what we are dealing with. But discovered that he really just wanted to talk with us to see if we had reconsidered having the Amnio and to discuss future decisions that were to come up by having this baby.
So, I was frustrated to begin with because I wanted to see my baby and see it’s growth and to hear that precious heartbeat again. **I love that sound!!
Then to hear him stating the bleak facts again, adding in the heart defect, (which we kept having to say “possible heart defect”) And painting once more a grim diagnosis for us. I was not a very happy mommy.
He told us that although our desires were understandable they may not be doable, for example, if the baby does have trisomy 18 and needs surgery to fix the omphalocele, some surgeons might not feel like it would be worth it or feel comfortable doing that surgery on the baby no matter our desires. Same with me and the C-Section. So, there really wasn’t any confirmation for us that they were understanding what we were saying.
And it was pretty obvious that the Dr. and us did not share the same ethical approach to life. Not saying he’s wrong in his diagnosis or that what he’s saying isn’t the normal medical way of going about it. But what I’m saying is that we want a different approach and if he’s not willing to really listen and care for us according to our desires then we don’t want this Dr. even if his specialty is in these types of situations.
So Dan and I left unsettled and both of us got online and started looking and searching for different Dr.’s and Surgeons that would be more inclined to give us the treatment we are asking for or at least respect where we are coming from. I am so thankful for all the nurses God has put into our lives and they have been huge resources for finding places to call. At first I was hesitant to look at hospitals other than Duke, but what good is all the finest technology if they aren’t going to use it on our baby?
We meet with our normal OB today (pray that he is understanding of our concerns and that he doesn’t feel like we aren’t trusting who he sent us to but just want options). Then hopefully we’ll have more appointments today and tomorrow with other hospitals and staff. We do feel blessed to live in such an area where medical technology is at it’s finest all around us. And as we told the specialist, “we aren’t people who are blindly ignoring the actual facts of what’s wrong with our baby, we believe him. Yet, we are not going to sit back and do nothing to help this baby no matter the diagnosis.”
Keep Praying. I feel very close to the Lord but I’m really having a hard time vocalizing my thoughts to Him. I”m finding myself praying that the Spirit utter groans on my behalf that I don’t seem to have the words to pray. And singing songs that I know in my heart is what I believe or want to believe.