Friday, August 26, 2011

Amniocentesis - What is it *really* like? - Part III

In case you missed the first 2 parts in this series or arrived at this page first, here are links to find:
Amniocentesis - What is it *really* like? - Part I
Amniocentesis - What is it *really* like? - Part II

After finding out the sex of our baby, I felt energized (other than being tired from the procedure)! I felt like I was finally allowed to be excited about my pregnancy again! I knew we still had a wait, but this was something! I started looking at names again, now that we knew we were looking for a boy name. It was so wonderful to be happy about being pregnant again!



The aftercare instruction sheet said something about test results arriving "after 4pm." So as 4 o'clock approached on Sunday, I started getting antsy. Then 5 o'clock came and went.... 6 o'clock... 7 o'clock... Elmo gave up. He figured it was too late to hear anything. Despite having emailed another question to our Genetic Counselor, I hadn't received ANY email from her on Sunday. Eventually, I gave up as well. And I bawled. The stress of the wait finally caught up with me and I cried. A lot. The tears came and went and came again, but I was just so upset.

Then, at 10 minutes til 10 o'clock, I got a response from the Genetic Counselor! No news. She said she'd call the lab as soon as they opened in the morning and at least find out when they'd have the results. She would call us immediately afterward. She noted that they are an hour behind us. I actually felt better having just heard from her. Now I knew that she wasn't sitting on the results.

She called within 10 minutes of open time for the lab the next day. She had the results. She offered me the option of getting the news by phone or coming in to go over the results. We had already been advised that good news is delivered by phone and bad news (they might not have worded it that way) is delivered in person.

So what were we to make of this? I couldn't believe I was saying it, but I said we'd wait. We had an appointment already set for that afternoon anyway. I hoped this way we could first enjoy our planned anniversary lunch. I do not know where my head was, of course we wanted to know! ASAP! I made several attempts to call her back, but she was with another patient. Once we finally got in touch, she said we could come down right then. They'd even get me in to see the doc at the same time. We threw clothes on and flew out the door!

We still had to wait about half an hour when we got there. When they finally called us back, it was to prep to see the doctor (urine, weight, etc). We were going nuts! When the doctor finally came into the examination room, he brought the genetic counselor with him. He immediately showed me / read to us the results. Amniocentesis confirmed that our unborn child is male. It also showed that our son has 3 (rather than 2) trisomy 21 genes. I may not be wording that properly, but the short version is this: Our son has Down Syndrome.

Sparkle and her dad at the 2010 Step Up for Down Syndrome walk in Orlando, FloridaSparkle and her dad at the 2010 Step Up
for Down Syndrome walk in Orlando, Florida
Photo credit.

We still then had to go through the exam. Our doctor palpated my uterus, measured it, and listened to the fetal heart rate. Everything looked good. The Genetic Counselor had some information for us (and a box of tissues in hand), but we asked to go to her office where there were chairs for each of us as well as a basket of toys for Sasha.

She was very helpful. She had photocopied a huge stack of resources for us, linking to websites. (The stack included a page about adoption and a page about support should we choose to terminate.) She answered our questions and made sure we knew that she would continue to be available to us, should we think of more questions later. She gave us the name of her favorite book about children with Down Syndrome: Babies with Down Syndrome: A New Parents' Guide. (I'm likely to reference and possibly even review it later.)
(Affiliate Link)

We made arrangements to have an echo-cardiogram in a few weeks. This wait was over, though. The wait was, without a doubt, the hardest part. We both felt like we could handle this. We love our son. We were, amazingly, okay with the results. It could have been worse. We went from there to our anniversary luncheon where we did discuss some of this, but also enjoyed a good meal together.

I'd like to add what I feel helped me the most with accepting this news. I saw a couple of mentions about people being on a waiting list to adopt children with Down Syndrome. I Googled "Why would someone want to adopt a child with Down Syndrome?" or something like that and found an interview with the answers. Some of the things people say about these children is so amazing and it is all so sweet. I feel as though I've been given (however forcibly) a new hobby. I'm passionate about whatever topic I approach and this will be no different.

And we can handle it!

8 comments:

  1. This is Sparkle's daddy, and I really enjoyed your post. We didn't find out until the delivery. The manner in which the Dr.s and hospital handled their care and infir,information sharing with us less than proessional let alone caring in any way.

    That all seems years ago now even though it is a mere 16 months later. Sparkle is an amazing girl who continually amazes her therapists and parents alike!

    The photo you used is one of my favorites and we hope to get many more on this years walk in October. If you want to follow along on our journey follow us on twitter @TeamSparkle. As usual @delwinfinch will be taking an amazing amount of photos! We welcome one and all to support and walk with us!

    Blessings on your journey - Randy/Sparkle's Daddy

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  2. when I got the results of our amnnio I asked what gender was the baby...when they told me it was female...I was so relieved to know...I always wanted a little girl...and I then grieved for the girl I thought I would have...but in the end we knew everything about Maddie before she was born...I saw her on 4-d ultra sounds...I knew of her TEF/EA...and we could prepare for everything...and I knew I loved her...but I did not know if I could be a good mother to her...I to googled EVERYTHING ds...the more I knew the more control I thought I had...and the day she was born was the hardest day of my life...it became real and Maddie was here and mine...our lives have only gotten better with her...if I could I would NOT take away her 3rd chromosome...I would take away her health issues...I am glad to hear you are having a bouncing baby boy VERY Exciting!! I am thinking of you... smiles

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  3. @Chromosomally Enhanced

    Since I don't feel like I grieved at all *after* the news, I find myself wondering if it will really hit me after Spencer is born. I'm hoping I'm as okay with it then as I am now.

    What is TEF/EA? I've read a couple of books already and am putting together a notebook to track and remember all the different health subjects. I plan to have another for therapy. I'm hoping my OCD tendencies will help with all this, but yeah... I can only hope I'm a consistent enough mother for Spencer.

    And thank you! We're excited. :)

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  4. Oh my goodness, what news! I love reading about your love for your baby boy. You will be an amazing mama to him Jorje!

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  5. You probably already know about Kelle Hampton's blog " enjoying the small things" (sorry, I'd link, but I'm on my phone) her daughter Nella was born Jan 2010 with Down Syndrome. Beautiful blog, sweet family, gorgeous babies!! Best of everything with your pregnancy and sweet boy. :)

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  6. I am not sure all people grieve...I think we all handle our experience different that is what makes it ours...TEF/EA -- TEF is Trachea Esophageal Fistula this is where there is a blockage between the esophagus and trachea...Maddie had this and was repaired at birth...EA is is Esophageal Atresia this is when the Esophagus is not attached to the stomach...Maddie also had this and was repaired at birth...this made it so she could not drink/swallow my amniotic fluid...and I had to be drained of fluid every month after 5 months pregnant...and for Maddie this has made her esophagus an hour glass shaped tube...she chokes often and has had 2 dialations on her esophagus since birth to make her esophagus the size of a cheerio...she just got teeth and just learned to chew...so we are introducing "real" food to her diet...she will have an issue with her esophagus for her life...and we are learning to deal with it...she has severe acid reflux because of the TEF/EA...and will be on meds for a long time...but it is controllable...this is common with kiddos born with Ds...1 n 4000 live births...hope this explains TEF/EA...smiles

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  7. Whao, that is some big news! Spencer is so lucky to have such a passionate and well-informed momma. You will do great!

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  8. Just wanted to say thanks for sharing this. It got me remembering...

    I had an amniocentesis at age 38 (like you I knew I'd choose to keep the baby but wanted to be prepared for all eventualities). I ended up losing that baby at 17 weeks gestation. I was told that the amnio' could have been a factor. The second time around I had no amnio' (though at 40 years old some thought I should) and I lost that baby at 17 weeks too.

    By my third pregnancy all I cared about was having a live baby! At 41I declined the amniocentesis.

    At nearly 42 I had my daughter. Despite lots of early indicators that she was going to be disabled in some way (and a year spent undergoing tests etc.) she is now a healthy, typical 6 year old.

    If I had my time over I wouldn't have an amnio that first time. I would just love each baby in the moment and let the future take care of itself.

    After all, it has a way of doing that anyway!

    I hope all goes well with the rest of your pregnancy! How lucky you are to be having another child!

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