Sunday, May 16, 2010

Stories Relayed to me on Lilly's Birthday

I learned yesterday that there were 4 students in the room during my c-section. I am used to the students because my Dr's office usually has them and there actually were a number of them who measured me and Lilly and took her heart rate before my Dr. even came in the room. I don't mind at all. I hope they got a lot out of their experience both from watching the c-section as well as the experience of meeting Lilly, a baby with anencephaly. I was in and out of it due to the nitrus during the c-section so I missed Lilly's first cry. I did get to hear her cry and coo later so I am ok with missing it. I got to carry her for 9 months so its nice that my husband has a memory that I can not share in. I love hearing the story of how she shocked everyone when she came out crying. Michelle, our NILMDTS photographer and Rachel's Gift Companion said she was fiesty when they pulled her out. I said "like put me back in, what are you doing? I was comfortable" and she said "yeah"

Anencephaly babies are expected to be born not gaining consciousness and its so textbook and every one of babies born with anencephaly are unique in what they are able to do. The point is they are able to do a lot more than doctors inform us of. Our doctors fortunately never told us what Lilly would not be able to do, just that she would not live long after birth if she made it full term. We read about their abilities as described on line in medical literature. Through the support groups I am in, I learned that babies born with anen can do so much more than they are given credit for. So I hope that these student doctors will take their experience with them.

The neo-natologist's assistant was pregnant herself and I was excited for her. I even asked her about her baby. I never once thought about how difficult our situation might be for her. I was told she was asked several times if she was ok and if she wanted to leave they would understand. She never left my side. She kept saying she was ok and she went above and beyond for us. I will never forget that. It meant a lot not knowing this, but means even more now that she stuck with us even when given the chance to leave. It would have been completely understandable if she had chosen otherwise, that is why it means so much that she chose to stay. She came the two days after as well to visit with us and the neo-natologist, just to check and see Lilly's progress. They were both amazed by her. My Dr. came the day after Lilly was born and the first thing he told me was that she came out crying. He was amazed too.

We are so grateful to have been blessed with great doctors, nursing staff, and lactation consultant. No one treated Lilly as if they were expecting her to pass away at any moment. And for that I am forever grateful. There are so many happy memories surrounding our time with Lilly, which is what we wanted. Because of this it makes it easy at times to not focus on what we didn't get and what were missing out on everyday. I miss her so much still, but can look back and think about our memories of her or look at her pictures and just smile. I can't help but smile when I look at Lilly's picture. I am so proud to be her mommy!


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