Saturday, October 1, 2011

Update on Emma

This week was a bit of a roller coaster. I'm currently seeing the doctors twice a week for NST's. I was going to Maternal Fetal Medicine one day (I would get an ultrasound too) and the other day to my OB dr. Well this Monday's appointment at MFM they found so fluid around Emma's one lung. They called it a Pleural Effusion. The dr. goes on to say if it doesn't get better they may have to deliver Emma early. I didn't get a lot of information once he said that. I just kept saying uh huh and ok. He said lets look at it again on Wednesday. Well of course I have to google things when I get home... DO NOT DO THIS! Definitely mislead me. I of course couldn't sleep well that night so I called MFM the next day to see if I could come in then. They said sure, but the dr. really wanted to see if the fluid changed and I would probably still have to come in on Wednesday. I was fine with that. So Tuesday I went in... they said the fluid looked better. I was surprised because I didn't know if could do that... but they wanted me back the next day to see it again and to also look at her heart again. So Wednesday I'm feeling better... I go to the appointment and the fluid is even less! YES! I was so happy!! I finally got some answers about all the reading I did and felt in a much better place. The fluid could build back up or go away completely. If it gets worse we will most likely be talking an early induction. But for now they have me going to MFM twice weekly now w/ and ultrasound at both appointments. The NICU team at York have already been told about me and Emma, so they are ready if we have to go early. I will try to keep everyone updated as we continue this journey.

On a side note. I would like to pass some information that I read on the message board that I go to frequently. It's a post on how parents prefer to refer to their children w/ Down Syndrome:

We've got a number of new moms and moms who are waiting for their babies. It is so good to have you on the board and we hope we can support you along your journey with your new little ones during this uncertain time.

I thought it might be helpful to give you some information about what language most of us who are parents of children with Down syndrome prefer to hear when referring to our kids. This is something most of you can carry with you if your child has Down syndrome or not. And if you didn't know the way we prefer it until now, please don't feel bad if you wrote something that wasn't the way it is written below - many of us did the same thing until someone told us!

Below are tips for the proper use of language for "Down syndrome". The National Down Syndrome Society and the National Down Syndrome Congress encourages the language below:

Down vs. Down's. NDSS and NDSC use the preferred spelling, Down syndrome, rather than Down's syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s" connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it.

People with Down syndrome should always be referred to as people first. Instead of "a Down syndrome child", it should be "a child with Down syndrome." Also avoid "Down's child" and describing the condition as "Down's, as in, "He has Down's." This seems like a minor distinction, but to me it is like the difference between someone telling you 'you look pretty in that dress' vs. 'that dress looks pretty on you.' One compliments the dress, the other is a compliment to you.

Down syndrome is a condition or a syndrome, not a disease. People with Down syndrome can be perfectly healthy.

People "have" Down syndrome, they do not "suffer from" it and are not "afflicted" by it.

It is clinically acceptable to say "mental retardation," but you may want to use the more socially acceptable"cognitive disability," "cognitive impairment," "intellectual disability", "developmental delay" or "intellectual impairment."

Feel free to ask questions if you'd like additional explanation/reasoning on these points!