Monday, February 6, 2012

Specialist Appointment

33 Weeks
I am happy to announce that unless something changes between now and when she comes, we do not have any more yacht payments (what I like to call the specialist appointments). I do however need to go in to the regular OB twice per week now for non-stress tests. How do people without such generous sick leave do this?

On Thursday at 6pm I got a recorded message saying my appointment was an hour later than I had written down, but since it was after hours I couldn't call to see why we had different times. On Friday, I completely forgot to call, so Ryan and I headed over for our 8:10 appointment. It turns out that their reminder system does not factor in the ultrasound, so we were there at the correct time. Shockingly, we only waited for a few minutes to be called back to ultrasound (it is usually at least 20 that we wait).
We had the exact same ultrasound tech today as we did last week for the heart ultrasound. I don't understand why they couldn't have done both scans then..... However, this is my favorite ultrasound tech, so it worked out. She knows when to keep her mouth shut and not say things that get our hopes up (unlike the rest of the techs), but she is super friendly and nice.
After the ultrasound the doctor usually comes in and talks to us, but this time the appointment was scheduled with (or maybe changed to) with their midwife (I am curious why I (our insurance) am paying $1,500 per appt to meet with a midwife about something other than natural birth).  They moved us to an exam room where we waited 20 min before she poked her head in and said she wanted to talk with the doctor before talking to us (why doesn't the dr just talk directly to us?)...... so 20 minutes later she came in and said that everything is what they expected it to be. I asked if it was where they expected it to be for a child with DS, or any child, and she said she was small. I asked what her ventricles were measuring and she said she didn't know but she thought she saw on the chart that she had a mild case of "big medical word meaning larger ventricles", but she didn't have a measurement. Per my googleing, large ventricles mean a higher risk for reduced mental abilities (even in children without DS), so I asked her if our daughter will be less capable than other children with DS and she said that since it is mild, it should not play a role in her mental capacity (no matter what her DS diagnosis is).

After all this, I saw a copy of the ultrasound report on my file and asked her for a copy. The report itself said that her ventricles and bowels were in the "normal" category. The only thing listed under abnormal was her heart. The growth chart showed her hugging the bottom line in the normal category for growth. They estimate she is about 3lb 8oz right now.
The highlight of our 3 hour visit however was meeting the NICU doctor. I love this lady. I believe that no matter what problems our little girl has, she is going to be in the best hands with this lady around. You sometimes hear stories of doctors not trying as hard to save babies with down syndrome if something goes wrong, but this lady seems like she will value my daughters life just as much as any other life! It sounds like they will try to keep the baby and I together as much as safely possible. It is possible that the baby may not need to be admitted into the NICU at all and she will go home with us and it is possible that she will need to be air lifted to Ann Arbor for heart surgery (but the heart doctor does not think this will be the case). I asked the doctor if the DS diagnosis will make her less likely to survive her first year that most children and she said that she did not think so. The rest of our conversation was about my frustration with the termination suggestions and how the hardest part of the diagnosis is other peoples reaction and her efforts to change that. She is very active in working with outside organizations and is also working to help doctors better deliver the news (and options). She also works with an organization that helps moms who made the choice to terminate work with the emotions that come with that decision.

IF YOU KNOW ANYONE WHO HAS BEEN ENCOURAGED TO TERMINATE IN THIS AREA OR HAS TERMINATED AND NEEDS SUPPORT, PLEASE LET ME KNOW SO I CAN GET THEM IN TOUCH WITH HER.

In closing, I have some fun non-medical news. Our little girl is already competing with her big brother in one department: Hair. The ultrasound tech said "look at all that hair" (which is the comment many people made about Jamin after he was born). I asked the u/s tech to take a picture and because she is awesome she did:

3 comments:

  1. I find myself eagerly awaiting your next posts! 33 weeks already! I'm still keeping you and your little peanut in my prayers!
    Christina

    ReplyDelete
  2. Since I don't get to see you on Den runs, I love getting updated this way. Keeping you, your little one and family in thoughts and prayers!!! You are an incredible Mom!!!

    ReplyDelete