A Mixed Bag

This weekend has been absolutely beautiful! This is what living in California must be like…
*sigh*
Anyway, Friday I took a half day from work so Barry and I could go to all our doctor’s visits in Houston.
It made for a long afternoon/evening, but it was worth it.

First we met with a genetic counselor who was incredibly helpful. She had already taken the time to speak with my OB and MFM, gather our file together and create a packet of resources for us. She was very professional, honest, politically correct and frank with us. I appreciated her honesty but it was a bit difficult to swallow. At least she didn’t list all the medical conditions attributed to Ds.

The first thing she wanted to cover was our risk factor for having another child with Ds. To do this, she quickly squashed all hope of our amnio being inaccurate. Delicately, of course…and I appreciated it. I need to stop thinking that just because Eli looks fine on the ultrasounds that he won’t have Ds. He looks fine because he is fine.
She then informed me that I would obviously have an increased risk for having another child with Ds but that it was very small (less that 1%). This risk increases with age…it’s basically 4.7 multiplied by my age).
Ok, I can handle that risk.
Next she went over our family history, which she said looked great.
Even commented that it looked typical for a family tree- including our son with his seemingly random diagnosis (compared to the rest of the family history).
She then showed us Eli’s actual karyotype and confirmed that he has Nondisjunction T21 (not mosaic or translocation). That was the first time anyone had shown us the results.

Pretty neat! Those are my son’s chromosomes!

Finally, she gave us some resources, books and websites to get into contact with. Of course she suggested the Down Syndrome Association of Houston, and even felt that going to a Ds clinic would be a wise choice. Apparently it’s one stop shopping for doctors and they have the latest and greatest resources/information. The counselor was very supportive and encouraging. She made me blush when she bragged on how awesome she thought we were- getting prepared and educated. She basically said that based on what she was seeing, our son is going to have high expectations, all the resources that are possible and a great upbringing. 🙂 We were beaming with pride, of course!!

While at her office, we ran by my MFM doctor’s office. At my 20 week ultrasound, my doctor had a hard time seeing Eli’s heart. He set up an appointment for 5 weeks later to get a better look. In between that time, we had the amnio, diagnosis and fetal echo. I wanted to make sure we were supposed to keep the appointment, since his heart has already been the focus of many ultrasounds.
The lady at the appointment desk was very rude and pointedly asked me if we intended to keep our pregnancy in front of other people. Seriously? I am asking about an appointment that is in 2 weeks from now…and I am clearly pretty darn pregnant! Oh, you better believe I got a little angry. -_-

So after talking (more like yelling) to her supervisor and confirming that I did need to keep the appointment, we drove off to see Dr. H. He was in a good mood. 🙂 Very excited and very supportive. We went over all our options for Baby Newman #2 and I felt overwhelmed.

IVF cycle #1 due to severe male factor sperm morphology issues- 3 day transfer of 2 embryos. Remaining 5 embryos didn’t make it to day 5.

Options:
~~Try naturally on our own (10-15% chance of success normally…not including our morphology issues…could be frustrating and pointless)
~~IUI with sperm donor (10-15% chance of success after several cycles, significantly less money but still pricey)
~~IVF #2 with more aggressive stimulation to produce more eggs and *try* to use PGD for testing (with our own embryos, we could risk damaging a perfectly healthy embryo OR wind up with nothing since our embryos did not make it to day 5 last time. This is a huge financial investment and carries a potential risk of loss…that or we do IVF just as before with no testing and hope everything turns out fine the second time around).
~~Embryo adoption/donation (may not have the ability to use PGD if the embryos were frozen after day 3, also requires lawyers and homestudy).

Dr. H agreed that we could start right away, with obvious time for healing after birth.
Barry and I both agree that genetic material does not make you a parent, but that going through the process of carrying a pregnancy is important to us. So that being said, part of me does want to see what if the two of us can make another baby that is our own. This is risky because of the financial burden and possibility to wind up with nothing. We could opt out of PGD testing and hope that if the cycle is successful that there are no abnormalities…or test using MaterniT21 again at 10 weeks just to be sure.
ugh…I don’t know. Dr. H felt that another IVF cycle was definitely risky but that he would take all our history into account.
Dr. C thinks that IVF with our genetic material is definitely a viable option.
I still don’t know. Barry hasn’t given it much thought.
I guess it’s a good thing we have lots of time to decide! lol I just wanted to begin preparing financially…whether that means adoption, or another full IVF cycle.

It felt good to write all that down!!

After ALL that, we went to dinner with my family. While at dinner, Barry spotted a young man with Ds. I walked right over to the table and started chatting with his mom! That was so hard because I was nervous- what if I assumed wrongly that he had Ds? What if she didn’t like strangers talking to her about her son? Was it rude to talk about Ds in front of him?
None of it mattered as soon as I told her our son was coming to us with Ds. She lit up, immediately exchanged information with me and shared a bit about her son! It was nice to meet another family in the area face-to-face, but it was daunting at the same time.
Suddenly all my fears came back and I left there with a heavy heart.

What a day Friday was!

Ok, so then Saturday came and I forgot all about those silly worries! The day was so beautiful!

We ran errands and did stuff around the house. I walked around the stores without a care in the world and then suddenly walked by a full-length mirror. I saw my bump and it just made me pause. I am now that woman I envied. Blissfully carrying around my bump unaware of how it makes my fellow IF warriors feel. Wow…when on earth did that happen? I just starred at myself in the mirror appreciating the gift that we have been given.

By the end of the day, we were both on the couch and I had time to sit and think again. That’s dangerous!
So to stop all that silly worrying and thinking, I finally popped in a DVD that we are borrowing from our Ds support group. Truth be told, I had been avoiding it because I didn’t want to watch an “inspirational Ds video” that would make me feel weird, sad or worried. But I did it anyhow and I am so glad I did! The movie, Dakota’s Pride, explores the truth about Down syndrome and was truly inspirational! So so so many children out there who are showing us every day that there are no limits to what they are capable of!
Not only did it present the successes of children with Ds, it also highlighted key information from educational/research foundations and a religious standpoint. I was moved to tears a few times (I know, not hard to do these days), and just felt so blessed to have seen it and I hope that I can show my family the video at some point.
It gave me more hope for the future of my son than anything else. I truly felt encouraged about the possibilities he has!


Want some more positive stuff? You got it! I painted my toes (getting harder to do), enjoyed some beautiful weather and got a care-package for Eli that had the cutest owl hat in it.
Bring it on, Sunday, what else do you have for me?

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8 Replies to “A Mixed Bag”

  1. What a very mixed bag of adventures & feelings and a courageous few days!!  You are not afraid to stand up for yourself and Eli (the receptionist) and to gather info directly through doctors and families and lots of media options (social & DVDs).  It is all daunting but good and scary too.

    The good thing is that you dared to try. You don’t always have to but it is empowering when you do. Receptionists that need sensitivity training care so important to your journey, I also am passionate about changing their ‘bedside manner’  but sometimes need to think it through and wait (which means it may still be on a to do list!!). Regardless, our feelings and understanding of the discussion is critical to the health and happiness of other parents less strong in their decision to continue their journey after diagnosis.

    I am a math person and I do not understand the 4.7 times your age statistic. It would be over 100% by age 25. 4.7 times your age DIVIDED BY 100 seems to be a decent rule of thumb that is fairly close to the NDSS (National Down Syndrome Society) incidence of DS by Maternal age chart for everyone — plus the extra 1%.  

    http://www.ndss.org/index.php?option=com_content&view=article&id=61&Itemid=78

    The risk for a baby with DS for anyone at 34 years old is 1 in 450 or 0.22%  (1/450 = 0.0022 times 100 to show it as a percentage not a decimal makes it 0.22%).  If having a baby with DS, adds 1% then the risk is 1.22%.  The 4.7 approximation / 100 approach would be  4.7 x 34 / 100 = 1.598%.

    At 40 years old the risk on the chart is 1 in 100 or 1% plus 1% is 2%. The 4.7 approximation is 4.7 x 40 / 100 or 1.88% which is close to 2%.

    What I also think is tough is the 10 to 15% success rate after several IVF rounds. What a trying scenario to face and I’m very sorry it is such a tricky path! But it only takes success to make it all worth the long second journey. I guess with IVF you have exact control & medical assistance to perhaps guide and increase the number (or success, if the estimates are biased on the low end maybe??) perhaps of attempts but with the same odds as nature in the long run it would be a very tough decision.

    Having tight financial control in general is being fiscally responsible to save and do whatever you choose for any endeavors so it is not a bad choice around enjoying some of the fruits of your successes in life!

    Take time to research and meet people as you can and are motivated to do that connecting but don’t be upset with yourself or your husband and extended family if the passion isn’t always there. Find connections you feel comfortable with and who also don’t mind your questions and energy (or ebb and flow of energy like mine!!). It’s all part of processing and the highs and lows are to be expected as you think and plan and re-plan.

    Hang in there and be a resource as you are already to help those people on the path to exploring fertility issues. You are blessed but you can still help others sort through their options and where they find themselves on the spectrum of options and paths in life. And thats okay too. You are empathetic and a solid reference of help to others, your ability to express and share your emotional journey alone is enlightening. Be proud and strong but don’t be afraid to float and be supported by your helpers sometimes too!

    And remember your words about the mom, she LIT UP and so will you– Excited about sharing a little extra.

    1. Thank you my friend- yes you are right, it is 4.7 multiplied by your age and divided by 100. I was just writing it the way she had written it on my paper. Sorry!

      As for our options. I think we are coming closer to what will be best for us every day. 🙂 Just have to pray and wait to see what happens.

  2. Hi Ashley,
    This is Cheryl, I commented to you on FB, the DS page. I live in North Houston (Humble). I wanted to give you my email, it is cherylkinne@yahoo.com
    Our little Luke is almost 20 months old now, he is our third boy! It took me a while after having Luke to meet some other moms that had children with DS. I could relate to your story about going up to a complete stranger and being so nervous. But, it’s always been a GREAT experience, and they want to share. And it always seem that everyone has their share of fears, but things end up good 🙂 Hope to hear from you.

    1. Hey Cheryl! You are very close to us!! 🙂 I just added you on FB 🙂
      Your boys are precious!
      I would so love the opportunity to meet you and Luke. Maybe we can set something up over spring break?

      1. I’d love to meet you too! Honestly, meeting a sweet little guy like our Luke will help you see the things that you get to look forward too 🙂
        Are you teacher (spring break clue)? I teach part-time preschool now (used to teach elementary). I have the same spring break as the schools around us. If you are reading the Babies With DS book from DSAH, don’t finish it. I sometimes use it for looking up a question/medical info., that’s it. Buy the “Gifts” DS books, or you can borrow mine.

      2. I already read Gifts and I really enjoyed it! But yes, that is the other book I am reading: Babies With Down Syndrome: A New Parent’s Guide by Karen Stray-Gundersen. YIKES!! IT’s so bad!
        Private message me on FB and we can work something out. Spring break is the week of March 12 for us 🙂

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