So, MRI.
We have the results. Basically it comes down to the fact that his airway is open, but it is narrow. They aren't going to say for sure if he will be able to breathe or be intubated easily at birth or not. It is childrens hospital anyway, and they make sure to cover their end as well as possible, so if they can make something sound terribly bad they will do it! That is their motto!
"Childrens, because here we give you only the worst news possible!"
My maternal fetal doctor called today to give me his recommendation. They are very worried he wont be able to breathe and he wont be able to be intubated at the Childrens hospital in Neenah, so he thinks what is best is to do an Exit procedure.
Ever heard of it before? Probably not unless you were to have needed it or watched the documentary on Netflix on how they do surgery on babies inside the womb. Well it is just the most delightful way to deliver, every mothers dream labor and delivery possible...
The EXIT is an extension of a standard classical Caesarean section, where an opening is made on the midline of the anesthetized mother's abdomen and uterus. Then comes the EXIT: the baby is partially delivered through the opening but remains attached by its umbilical cord to the placenta, while a pediatric otolaryngologist-head & neck surgeon establishes an airway so the fetus can breathe. Once the EXIT is complete, the umbilical cord is clamped then cut and the infant is fully delivered. Then the remainder of the C-section proceeds.
So this is the recommendation that we have from our specialist that we do. If Madison doesn't want to do it, then the only place we could do it at is Milwaukee.
I am struggling with this because everything is based off of a hunch. The problem is they are relying on the ultrasounds 100% and they believe he has a very strong contracture in his neck and his head wont be able to flex when he is born. I cannot believe he is worse than Lua was, and if they could intubate her, I cannot image they really would struggle at intubating him, but by the sounds of it, he sounds like he is equally bad if not worse. Except we don't know. The term, better safe than sorry, floats around every doctors head I suppose.
I some what wished that we would have done nothing with this pregnancy. Get a midwife, have the baby at home and whatever will be will be. Instead of getting doctor after doctor involved so they could tell us crap after crap after crap. The interesting thing is they didn't even want me to end the pregnancy. The genetic counselor asked if we had considered and when we said no she said, Oh good because it would be really difficult to do that.. What is the deal? I thought everyone was offered to end pregnancies these days. I mean I wouldn't have done it no matter what, but I find it interesting how much crap news they give us all the time and they never pushed for it. I strongly believe that the more medical attention you get, the more likely it is that you will have things done that are not necessary for you, or whoever else may be involved. So do you stand against every doctor and go with your gut, when you have no medical experience or knowledge? Probably not, you trust doctors to be making the decision that best suits you. I trusted the doctors knew what was best for Lua... the 30 calls I made when she got sick and the 30 times they said do nothing, just watch her, just do nothing, dont give her medicine, dont bring her to the hospital, lets just keep an eye on her. I trusted they were right. So therefore I got to watch my baby die because I thought they knew what was best.
So this decision is a difficult one for me. I do trust our maternal fetal doctor, who I don't trust is milwaukee childrens because they have only shown us over and over again how much they get wrong. I suppose I'll just go with the flow on things, I mean how bad could it end up? Worst cases will end up being for me and not the baby anyway. Say something goes wrong and they have to end up doing a hysterectomy on me or something like that and so I no longer have the option to have any more kids. Which would probably be for the best anyway, I don't think any future kids want to be born from us, we can only provide them with weak muscles and lack the ability to breathe. So are the risks that risky? Probably not. But do I question if it is necessary? 100% I do. I really don't feel like it is necessary to do this procedure. Now we just need to think on how badly we want to go against the doctors recommendations.
I am struggling with this because everything is based off of a hunch. The problem is they are relying on the ultrasounds 100% and they believe he has a very strong contracture in his neck and his head wont be able to flex when he is born. I cannot believe he is worse than Lua was, and if they could intubate her, I cannot image they really would struggle at intubating him, but by the sounds of it, he sounds like he is equally bad if not worse. Except we don't know. The term, better safe than sorry, floats around every doctors head I suppose.
I some what wished that we would have done nothing with this pregnancy. Get a midwife, have the baby at home and whatever will be will be. Instead of getting doctor after doctor involved so they could tell us crap after crap after crap. The interesting thing is they didn't even want me to end the pregnancy. The genetic counselor asked if we had considered and when we said no she said, Oh good because it would be really difficult to do that.. What is the deal? I thought everyone was offered to end pregnancies these days. I mean I wouldn't have done it no matter what, but I find it interesting how much crap news they give us all the time and they never pushed for it. I strongly believe that the more medical attention you get, the more likely it is that you will have things done that are not necessary for you, or whoever else may be involved. So do you stand against every doctor and go with your gut, when you have no medical experience or knowledge? Probably not, you trust doctors to be making the decision that best suits you. I trusted the doctors knew what was best for Lua... the 30 calls I made when she got sick and the 30 times they said do nothing, just watch her, just do nothing, dont give her medicine, dont bring her to the hospital, lets just keep an eye on her. I trusted they were right. So therefore I got to watch my baby die because I thought they knew what was best.
So this decision is a difficult one for me. I do trust our maternal fetal doctor, who I don't trust is milwaukee childrens because they have only shown us over and over again how much they get wrong. I suppose I'll just go with the flow on things, I mean how bad could it end up? Worst cases will end up being for me and not the baby anyway. Say something goes wrong and they have to end up doing a hysterectomy on me or something like that and so I no longer have the option to have any more kids. Which would probably be for the best anyway, I don't think any future kids want to be born from us, we can only provide them with weak muscles and lack the ability to breathe. So are the risks that risky? Probably not. But do I question if it is necessary? 100% I do. I really don't feel like it is necessary to do this procedure. Now we just need to think on how badly we want to go against the doctors recommendations.
No comments:
Post a Comment