grass diaries

a little bit of everything...

Saturday, January 30, 2010

Waiting for More News

Didn't mean to leave you all hanging like that. At this point, I don't have much new information. I had my appointment with the midwife, who said the major concern is Down's Syndrome because if it were something like Trisomy 18, we'd likely be seeing major structural abnormalities "incompatible with life." I'm not sure it was the most reassuring meeting, as I would have liked to hear her say unprompted: "Don't worry, we see this ALL the time and it's almost always nothing." But I didn't really get that, although she did say that sometimes they see these things and it turns out okay.

On Monday I will go to see the medical genetics counsellor and hopefully that person can give me a bit more insight into what this all means. I am still awaiting the results of my quad screen, so I'm not sure I'll have them in time for that appointment, which is unfortunate. But I'll be able to talk about possibilities, and depending on how the quad screen comes back and what the counsellor says, I will make a decision about amniocentesis, which is the only way to have a definitive answer about all of this.

I've also been talking to people in real life and on message boards and have gathered lots stories in which ultrasounds were wrong. I spent an evening poring over medical journals. There was a big meta-analysis of studies on "soft" Down's markers done in the Journal of the American Medical Association which states that they're really not a very good indicator in isolation. However, most of the studies make statements about it being a better indicator when there is more than one. On the bright side, it appears that the two markers we have are among the least worrisome, at least in isolation.

Emotionally, this week has been really, really tough. Looking back, it's been a fairly crappy year I've had- my aunt's death from breast cancer, my uncle dying in his apartment, dealing with all the family drama around my aunt's estate, D trying to find a new job in this recessionary economy, me waiting to hear back about being hired on at the firm. Still, this week has by far been the most stressful, tearful, sleepless one I've had. At times, I've convinced myself the child definitely has Down's. I stare at her ultrasound picture and try to see if she does. For several days I winced when she kicked or punched me, because it was a reminder of what was going on; I've been trying to block it out by working and sleeping lots. At times, I've wished this whole pregnancy away.

It's not that I have any doubts about my ability to love a child with Down syndrome. I volunteered with special needs kindergarten for a year, and I absolutely loved every minute of it. I know I would and could. It's the adult I worry about - the one who will be dependent on me for life, financially and emotionally. And the health concerns and costs. And dealing with a female child with an intellectual disability, who will vulnerable to being taken advantage of, terrifies me. It's funny, if something happened to LM and he was dependent on me, I'm prepared to be 100%, 200% there. But I don't even know this baby yet, and rightly or wrongly, I feel like this is not what I signed up for. Of course, neither did she.

But as the week has gone on, I am feeling more positive. I've actually FINALLY hit the part of my pregnancy where I don't feel sick and tired constantly. And I'm trying to put negative thoughts out of my head and send her positive ones when I feel her little punches and rolls. I try to repeat the mantra that my baby is happy and healthy and growing exactly as she should. And if she does have a disability, Down's or other, well I guess we will deal with it. But I'm not embarrassed to admit that I really, really, REALLY hope she doesn't.

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3 Comments:

  • At 5:16 PM , Anonymous Anonymous said...

    Keeping you all in my thoughts. Teresa

     
  • At 6:14 PM , Blogger Good Timing said...

    Thank you for the lovely comment about my latest entry. I do remember you also having one before LM. These things just aren't easy are they? i am thinking of you and hoping and praying everything will be okay for you. Big hugs. xoxo

     
  • At 9:02 PM , Blogger LL said...

    Of course you shouldn't be embarrassed for hoping that nothing is wrong - that would be the ideal thing for everyone in your little family, baby girl included. Which doesn't mean that non-ideal couldn't also be wonderful and more special than you can imagine, but if you can get all of the good in an easier way, why not hope for it? I'd be doing the same.

    I'm sorry this has been such a hard week - your description of your worries went straight to my heart. And I wish you could get through the "what is going on?" phase faster because I know you will be able to deal with whatever it is.

    Thanks for the update, I've been thinking about you.

     

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