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?

My Little Light Bringer

Today the is the Texan’s first game in the playoffs, so you know my husband already has his jersery on. 😉

I spent all of yesterday trying to call people back. Since finding out our son’s diagnosis, my phone and my facebook have been blowing up! Which is understandable! I mainly called family back so I could start to answer questions or at least reassure them that I was ok.
Many didn’t even know what our decision would be- if we would chose to terminate or not. Which was surprising, but everyone was supportive no matter what we decided.
Then is was- “we want more information”. Again, I am just blown away by the support my family is offering.
So I began researching.

Did you know that our precious boy will start therapy only a week after he is born? Or that he gets free health insurance and SS Benefits? I didn’t! Texas has some awesome programs that will help our little one and for that I am so greatful.

I am feeling better, mainly because I have information. I have contacts and I know what to do when he gets here. I also got in touch with a support group and another person who has a child with DS. And of course I have already added some of my favorite designer gene blogs to my site. So right now….I think that is all I can do.

I haven’t come up with more questions yet, so I think I will work on that today.
And a name!! This sweet boy needs a name!!

I was feeling to productive yesterday that I also began looking at embryo adoption and sperm donors. Barry and I always felt that 2 children would be what we wanted. 1 boy and 1 girl. But we both approached each other last night about changing that number. Our son will need a companion. Another buddy to rough-and-tumble with and protect him.
If we did embryo adoption, we could do PGD and know the gender and chromosomal make-up of that child before even getting him/her.
If we did IUI we would look for good sperm donors and try like that for a few cycles (although that adds up quickly).
Either way, we have some questions about that too.
I told you I was crazy, but both of these processes take time to arrange so I figured we would start early. When I am cleared for another pregnancy, we would already have everything in order. And who knows how many cycles it will take?
Gosh, building this special family is going to be fun!

Embryo Adoption Questions:
-How soon can we begin?
-Cost?
-Screening offered? PGD? Gender Selection?
-Medications/Protocol?

IUI/Sperm Donor Questions:
-How soon can we begin?
-Cost?
-Medications/Protocol?
-Screening/Choosing Donor?
-Quality of my eggs based on last cycle? Viable option?

DS Questions for DR. C:
-What kind of monitoring will we be doing throughout the remainder of this pregnancy?
-Do I still need to see the MFM doctor for another heart checkup?
-Do I need to register at the hospital?
-What services does the hospital offer for my child?
-Will I be able to hold him after delivery?
-Based on what you are seeing, what can you tell me?

2ww begins!

does he look so handsome? Hehe fun moment for both of us that really made it feel real.
So officially:Embryo transfer done! It went very well. Dr. H showed us the 7 embryos all graded. I don’t know what their grading system is or how it works (varies from office to office) but the majority of the embryos were grade 2. I think we had one grade 4. Anyway, 3 of the 7 were labeled “slow” so they will keep an eye on them until Wednesday. Had one highly fragmented one but the 2 we transferred were 5 and 6 cells grade 2 so that is really good.
We will know the fate of our other embies Wednesday.

Which is exactly why I wanted more than 10 but we will be happy with the embies we got. 🙂
I know Barry was super disappointed but frankly there are so many factors, including environmental, that effect the embyros. Regardless, all the grades and watching don’t mean anything. A highly fragmented embyro can still end in successful pregnancy. So I’m not going to worry about it.

Experience: up at 5am and in the office by 6:30. Prepped and wearing a loose butt-showing gown with my jellyfish hat. Barry also donned his little outfit as well and we waited. They walked me back to the room and had my legs up in high stirrups, with a huge light shining right at my lady parts. Awesome. Also, 3 stranger nurses standing around lookinng at my lit-up va-ja-ja. Barry got to come in and hold my hand. Then they injected our 2 precious embies and showed them to us on the ultrasound.
Dr. H said I had a very easy transfer and that’s a good sign. It wasn’t unlike an IUI but he is much more skilled and I had very little pain. Just some uncomfortaleness and cramps (but I had such a full little bladder, once I used the restroom I was fine). The ultrasound tech complemented my uterus. I told her it better be a good looking one! Lol after everythigng we have been through to get it that way! Haha
Anyyway, now I’m headed home to eat pineapple and lay flat.
Praying for super sticky embies! Our beta will be September 9th. 🙂 Feeling good and cautiously positive!