Every little bit of info can help someone

Last week I was contacted by another mom whose baby also passed away from anencephaly. Her name is Monika and she is the woman who created http://www.anencephalie-info.org/. A website that helped me through so many hard, sleepless nights while I was pregnant. I found most of the blogs that I follow now on the website also.

So, to say the least, I am beyond grateful to Monika for creating such a helpful site for moms who are given this diagnosis for their baby. I was more then happy to hear that she found my blog and that she thought some of my words on my blog may be very helpful to another twin mom in this situation. She has now posted one of my posts in the family section of the website. That really makes my heart happy.

I went on the website tonight after not being on it since I was pregnant and I read the newest stories and looked up new blogs. I came across one moms story that really made me think and wish....if I only knew then what I know now. If only Drs and hospitals staff were more knowledgeable about anencephaly.

Ryan and I met with a neonatologist at the children's hospital towards the end of my pregnancy. He informed us that he honestly knew as much as us when it came to the diagnosis and that he had read up on it before he met with us. He said that these babies just don't normally live through birth and if they do, we should not feed him or do anything whatsoever to prolong his life. We asked so many questions that he just didn't have the answers to. We asked if there was anything to do to the exposed part of his head and he said there was nothing we could do.

Well, come to find out..... if you give a baby with anencephaly oxygen, their color stays much better and they don't lose their breath so much. Babies with anencephaly sometimes have muscle spasms or seizures and the oxygen helps that. It keeps their muscles calm and not as tense. Well, some of you may remember me writing in an older post about how Cayden had those seizures a few times a day in the hospital and a lot in the last few hours of his life and to know that there was something I could have done to help him really upsets me. It was a very hard for me to watch him have them. I also found out that the spot on their head that's exposed, needs to stay moist. A sterile gauze with warm water is an easy way to do just that. You do not want to let it get dry or scab. I wish someone had told me this while I was pregnant. I had asked the Drs these questions and none of them had answers for me. They actually thought it was ridiculous when I said that I wanted to put something on his head to protect it from the air. I was scared of infection.
It really makes me sad as to how uneducated Drs and nurses are to anencephaly. This little information could be such a huge difference in a baby with anencephaly and may help relieve some stress that the family may have due to these things.

Monika Jaquier(founder of anencephaly-info.org) has published a report about babies with anencephaly who have been carried to term in a journal for ob/gyns. It is based on the experience and data of affected families. You can go on the website and email her your information: www.anencephalie-info.org/e/facts.php. I think it is so great that she has done this! I feel that we need to get the information out there more.

I thank you so much Monika for creating such a wonderful and informative website and for taking the time to gather information from other moms to further educate our medical field. You and your precious girl are in my thoughts and prayers.
I hope that someday Cayden's story can help another mom.....

I love and miss you Cayden.