Thursday, April 23, 2009

stuff to think on

I need to get this out, backdated it far back to make it easy to find.

Things we have to decide on. Things to do or not do.

tissue donations to the Duke university study on Spina Bifida, Anencephaly, and other Neural tube defects. We will likely do this. They will take small tissue samples from Asher, and from the other two they will take either cord blood samples or swabs from their cheeks for DNA. From Me and Mike they will do cheek swabs.

Second, Ashers birth.
Well, the birth of all three.
Asher won't feel pain. He will be blind and deaf, and he won't feel hunger or thirst.
We were told some parents opt to feed their anencephalic baby and others don't. She said some can't handle it.
Bathing and dressing him. We can do this or let the nurses do it.
We can keep him with us, even after death, as long as we need/want to.
When we are ready they will do the tissue samples. They can come to the room or nursery and do it, or we will be allowed to take him to the lab for it. They said if we do this they will make sure there is a private area for is.
We will also be allowed to walk with him to the morgue if we want, or one of the nurses can take him for us, or they can have the coroner come get him. I want to meet the person I'm handing my baby over to.

The nurse gave us a name. A woman that has worked with them on most of their stillbirths for pictures. Heather had a still birth herself several years ago, so she understands. Hopefully we can meet with her soon and talk about what we want, which, I really don't know what I want.

The other babies.
If they do not need to be in the NICU we have the option of having them with us while we have Asher, or leaving them in the nursery. I don't know yet what I want, and may not know till then.

I'm sure there is more that I can't think of right off hand, will add them when I think of them, or when more comes up.


  1. This comment has been removed by the author.

  2. Not much offends me, and I thank you for reading and commenting. I will always hold out hope that he can see, hear, and feel me.
    I have the names of a couple photographers from NILMDTS where we will be moving to, I've talked to one on the phone a couple times and so far am comfortable.

  3. sorry i was really worried i would have said something offencive and that why i deletd by above comment..before i saw your response...I dont think dr know enough about anney to even start telling moms what they should expect and shouldnt expect...every baby if different and special. do y9ou facebook....there is a huge group of wemen who have had babies with anney who are awsome with advice and support they are wonderful wemen.
    my facebook is:!/profile.php?id=1320065972

  4. I do, fairly new to it though. think this is how yo get to it

  5. Doctors do not know a lot about anencephaly, and I think it is in part due to the fact that EVERY baby is different, from what they can and can not do. We did feed Lilly from a syringe at first and then she nursed 2 days after she was born. She did not nurse or eat for 2 days. I am glad to hear that you have found NILMDTS. I hope you find a photographer that you like and are comfortable with. We had a birth plan, but like you a lot we just left up to how we felt in the moment.

    love and prayers