We finally met with Madison doctors yesterday. It was a long time coming, I think I knew we would always end up meeting with them but I was really hoping we would never get to that point.. but we did. We got a targeted ultrasound done and an echo ultrasound, both of those together took around 2 hours. 2 hours of laying on my back having my stomach poked and prodded so they could gather as much information as possible. According to the MRI his neck is flexed down to his chest, for the ultrasound they said his head is flexed down but to the side now. They believe with this head being constantly flexed that he has a contracture in his neck now and they don't think he will be able to extend his head back when he is born to be able to breathe. They also think from being in this position his airway will automatically collapse when he is born.
So we have a few options, basically the only option that gives us the best chances of survival would be this exit procedure I have previously mentioned. All of our options have ups and downs about them. While the exit procedure gives us the best option that he will get an airway and give us time with him, it could end up in an automatic trach, I will be left open while they try everything to get his air way giving me more risks for infection and more blood loss. The incision doesn't heal as well as a csection incision, and if they arent able to intubate, scope him, or do an emergency trach, then he will pass away and since I am being put under for this procedure, Thiago won't be with me or baby and neither of us will be able to be with our son if he passes away.
If we feel like we want to take the chances or we feel like we don't want him to have a life with a trach, gtube, and no movement, then we could have a normal csection, they can attempt to intubate and if they fail then they will keep him as comfortable as possible and we can spend whatever time he has with him.
Now that he has decided to go head down, at least for now, I also have the option to do a vaginal birth which would be the safest for me, probably most risky for him but then we have the same options, they try to intubate him and if it is unsuccessful then we comfort him for as long as we have with him.
With all of these options, we also have other options as to where we want to do this. Exit procedure has to be done at Madison, but we could also do the csection or vaginal birth at neenah or madison, just depends on what we choose is best for us. So we have the most difficult decision any parent could have to make going on right now. I truly do not know what to do. Each option come with what ifs. Doctors keep telling us that whatever we decide is the right decision... but how can that be when it basically comes down to possible life, or death? I do not want to be responsible to be making these decisions. I don't want to say good bye to another child, I'm not even 30 years old and I have the possibility of losing 2 children already. But I also don't want to give him a terrible quality of life and see him suffer. How in the world will we ever make the right choice?
I'm hoping something comes together for us so we will know what the best option will be, I wish there was something that would just push us one way or another. Until then, I am at the point where I am just going to enjoy carrying him and give him as much love as I possibly can while he is still with me. I've been spending time in the nursery, taking pictures of his ultrasound with his sister, so they can have at least something together, some pictures of my belly in his nursery, the things we have gotten for him... things like that.. I'm tempted to take my belly (just take it right off) and get a picture with Santa, all those fun things that we might miss out on. I just hope that we can be happy with whatever our lives become, with whatever decisions we decide to make, have no regrets and trust that we did the right thing for all of us.
If we feel like we want to take the chances or we feel like we don't want him to have a life with a trach, gtube, and no movement, then we could have a normal csection, they can attempt to intubate and if they fail then they will keep him as comfortable as possible and we can spend whatever time he has with him.
Now that he has decided to go head down, at least for now, I also have the option to do a vaginal birth which would be the safest for me, probably most risky for him but then we have the same options, they try to intubate him and if it is unsuccessful then we comfort him for as long as we have with him.
With all of these options, we also have other options as to where we want to do this. Exit procedure has to be done at Madison, but we could also do the csection or vaginal birth at neenah or madison, just depends on what we choose is best for us. So we have the most difficult decision any parent could have to make going on right now. I truly do not know what to do. Each option come with what ifs. Doctors keep telling us that whatever we decide is the right decision... but how can that be when it basically comes down to possible life, or death? I do not want to be responsible to be making these decisions. I don't want to say good bye to another child, I'm not even 30 years old and I have the possibility of losing 2 children already. But I also don't want to give him a terrible quality of life and see him suffer. How in the world will we ever make the right choice?
I'm hoping something comes together for us so we will know what the best option will be, I wish there was something that would just push us one way or another. Until then, I am at the point where I am just going to enjoy carrying him and give him as much love as I possibly can while he is still with me. I've been spending time in the nursery, taking pictures of his ultrasound with his sister, so they can have at least something together, some pictures of my belly in his nursery, the things we have gotten for him... things like that.. I'm tempted to take my belly (just take it right off) and get a picture with Santa, all those fun things that we might miss out on. I just hope that we can be happy with whatever our lives become, with whatever decisions we decide to make, have no regrets and trust that we did the right thing for all of us.
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