** Warning: the following post is about the Sugar Beats and the progression of this pregnancy. If in anyway this post will be a trigger or a source of pain, skip it. I'm quite serious. There will be other posts about other topics, so don't brave your way through.
Today I am 13 weeks pregnant. A milestone I truly believed I would never see. Physically I don't look much different from how I normally look, but both Grey and I have noticed that there's a firmness around my middle that previously didn't exist. Slowly but surely, this pregnancy is becoming more real to both of us, even though the reality is something I still fail to fully grasp.
On Monday, Grey and I took the afternoon off work to go in for our intregrated screen, which consisted of an NT scan followed by an appointment with the genetic counselor to talk about genetic testing. I been very nervous for this screen as my OB/GYN has really not helped with assuring me everything was okay.
Litte bit of background on the clinic my HMO would prefer me to go to: my insurance provider is more than optimal for people who have zero medical issues and are generally a bit clueless about their health. For someone who's been through IVF, though, they are far from optimal. Case in point: every visit I've had so far, the standard practice is to make the husband/partner/baby-daddy/overly-protective family member waiting in the waiting room while the nurse takes the expectant mother in the back to get vitals. The reason this is done is so that the expectant mother can have a few minutes alone with the nurse to bring up any issues she feels uncomfortable discussing when the other party is present. This is fine for a 16-yr-old with an absent baby-daddy or overly-protective family member. For a couple who has been through the wringer to finally become pregnant, not so good. Needless to say, the nurses have been very cold with me when it became evident that I wasn't saying a word without Grey in the room. Despite that, they've treated him no better than a sperm donor. One of many things we've been very unhappy with them about.
Anyway, because my HMO is so low-scale, they lack the facilities that are necessary in order to provide genetic counseling and to perform a NT scan. So off to the university we went, with strict orders that all of this was a one-time deal and that we were not to get too comfortable.
Thing is, we did anyway. The technician that performed the ultrasound had an amazing bedside manner, walking us through what images she was taking and taking a moment to point out the different things we were seeing. Both Beats were wide-awake, bouncing around, stretching and even waving at us. One particular moment where Beat B was kicking their sibling had all of us sighing and shaking our heads. But overall, the experience was a very surreal one.
The ultrasound tech sent us down to the cafeteria for 30 mins to allow the radiologist to go over the results and get them upstairs to the genetic counselor. Over a hospital cafeteria meal, Grey and I talked about how much we both missed being part of the university medical care system. Granted, there were some disastrous moments with the ER, but otherwise our care as students had always been exceptional.
Our meeting with the genetic counselor went incredibly well. We learned that both Beats had very thin NTs, indicating that their risk for various trisomies, chromosomal abnormalities and heart defects was greatly reduced. Still, after some discussion, they offered to do cell free fetal DNA testing if we wanted it. In addition, do to my family history of developmental delay (two cousins, one of which we suspect to actually be FAS), it was decided that I should also be tested for Fragile X.
Sidenote: for anyone who is considering genetic testing, I HIGHLY recommend you read up on cell free DNA testing.
A good place to start is with the following articles (http://www.wired.com/wiredscience/2012/12/ff-prenatal-testing/all/) and (http://www.ivillage.com/new-cell-free-dna-prenatal-test-carries-fewer-risks-pregnancy/6-a-512772)
The company that introduced the first of these tests (called MaterniT21 Plus) is Sequenom: (http://www.sequenomcmm.com/Home/Health-Care-Professionals/Trisomy-21/About-the-Test)
Since this introduction last spring, there are new versions that have gone on the market, such as the following:
Talk with your OB/GYN about these options (I don't know if midwives have access to this information) and make sure you talk with a genetic counselor before pursuing these tests.
Our appointment at the university drove home the reality that I could no longer wait on finding a new doctor. Luckily, I had already put in for a referral to see a MFM at the university, but immediately after the appointment I started contacting the resources Grey had found through his connections (one of the benefits of working in the biological sciences) to get their input and advice. What came back time and again was the validation that we were not getting the care we needed for this pregnancy from our current OB/GYN and that it was time to jump ship.
So on Thursday morning, when we sat down with the MFM and the care team at the university, we made the decision to be brutally honest with this team and to treat the appointment as an audition.
It took less than 10 minutes for them to win both Grey and me over.
When my name was called, they immediately grabbed Grey and made him comfortable in the exam room while they recorded my weight. All vitals were completed in front of him and any questions either of us had were answered. Then we were introduced to Nurse Jennifer, who has 30 yrs of experience delivering twins. She greeted us both warmly and immediately put us both at ease with her authority of the situation as well as openness to answer questions. Following this introduction, we had a 40 minute discussion with the MFM where we talked about all the different aspects of this pregnancy that needed to be considered, from preventing preterm delivery, monitoring and managing hypertension and diabetes and even about getting me in to see a nutritionist. Following this, we had a long discussion about APA syndrome and Lovenox (I need to be reassessed following the birth of the Beats) and things to consider with managing that. Most importantly, though, everyone we talked to wasn't overwhelmed with the situation. They treated us with respect but offered direction for care options and managing this pregnancy. I swear I almost hugged all of them.
So, after 4 weeks of feeling completely unheard and minimized, I finally feel like we've found a care team. Grey and I need to verify that this group can be our primary OB/GYN, but once that's done we are officially giving the finger to my HMO and telling them to pay out (which I know they will be far from happy about). This decision has calmed me and given me some confidence that I may actually be able to carry the Beats to as close to term as possible.
In short: this is our good news for the week. Another item to cross off the shitty-situation list. Now if I could find a resolution for a couple more issues, I'd be over the moon.
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