Friday, October 17, 2008

Using my knowledge and nursing....

For those of you that do not know me personally, the career that I have chosen for myself is a registered nurse. I work in the Neonatal Intensive Care Unit at a nearby hospital. Let me just tell you that it is the absolute most rewarding job that, in my opinion, one could have. To grow these preemies into big strong newborns is such a wonderful feeling.

When I had the ladies, I had worked in the unit for a little over a year. As I previously posted, at their birth, the NNP (Neonatal Nurse Practitioner) discussed her suspicions of DS. The pediatrician came in to tell me he agreed with the findings and he would order a chromosome study and ECHO in the am. Well, that was honestly the last time ANYONE in that hospital mentioned the words "down syndrome" to me and my family. We were left to research DS online. (you know how much I LOVE it when I hear, "well, the Internet said...."--UGh!) No handouts, no acknowledgement of Molly, nothing, nothing, nothing. I was under the impression that they were not discussing it with me and Mike because I worked there and they were "assuming" I was OK with things and understood everything there was to know about DS. In a way, that is correct but still. "Mum" is NOT the word here people!

When I returned from maternity leave, I found out that the hospital was suppose to give me a folder from the MN DS association and a social worker was suppose to come talk to me about my needs. That did not happen.

Over the past two years, we have had several babies with DS come through the doors. I, of course, took that opportunity to talk to these families as I am "one of them". I also took the time to interview the families about how well we have done as a hospital getting them the needed information (especially the Early Childhood Intervention program) and we did not do as well as I had hoped. Some got the info, some didn't. Then I started interviewing staff as to how they handle the situation and they said, "I don't know what to say".

Anyway, my point to this entry is this: After reading all of these blogs and reading about how sad and angry and disconnected and guilty my fellow moms and dads felt about DS, and how I was (NOT) treated while I was a mom with a brand new baby with DS, I feel VERY strongly that I, me, need to do something.

So, I got the hospitals axillary to order 20 copies of the book, "Gifts: Mothers Reflect on how Down Syndrome Enrich Their Lives" (http://giftsds.segullah.org) Can I just say that this is a wonderful book and brings so much hope to so many new families dealing with the new diagnosis. Anyway, I now have to go the OB clinics MD's, along with the genetics counselor, and let them know to hand out one to each of their patients getting the prenatal diagnosis and then off to the hospital and talk about it with my co-nurses and staff and have them do the same. Also, I am putting myself out there to talk to any family, day or night, about what it is like to have a child with DS.

Oh, I cannot wait to help and give my knowledge....

1 comment:

merwulf said...

You are amazing tracy... our hospital is so lucky to have you and your passion, and Molly is so lucky to have such amazing parents!