NIPT Funding 

24 hours after our application for funding for the NIPT (Harmony, Panorama, Verifi) was faxed to the Ministry of Health, it was approved! 

Our genetic counsellor emailed me the letters of approval, and then I hustled my ass down to the blood lab. The nurses were a bit frazzled about how to process me, as they rarely ever get requisitions like this that get sent to the States for processing (why in the world don’t we have a lab that does this in Canada?!?!!). I was a bit nervous about this (with all of the curve balls that have been thrown at us already), but the head nurse found a step-by-step flowchart that showed them how to process the paperwork and collect and pack up the sample. It took three nurses to do this lol.

So now the sample is off, and hopefully we hear the results sooner than later. They quote a processing time of 10 days, but Sarah at Three Hearts Beating got her results back in 6 business days, which would be approximately on Thursday of next week for us. Fingers and toes crossed that our sweet little baby has normal chromosomes. Please keep thinking and praying for us.

Thank you! I appreciate every single one of your comments and likes. Your support is so special to me.

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Our Appointment with the Genetic Counsellor

Months ago, an artist friend of mine was making pendants out of antique knives and spoons, and I just had to order one for DW’s birthday. It arrived in the mail today, and she loved it and wore it to our appointment downtown.

 
It was a super beautiful day to drive with the sunroof open, and we arrived on time to our appointment with the genetic counsellor at the fetal medicine unit of the hospital. Moments after we arrived, the waiting room went from four people to completely full, and we were seen for our appointment a bit late. Our genetic counsellor was wonderful. Early on, we had established that DW has a masters degree and extensive industry experience working in genetics and DNA analysis, and that with my medical degree education, I was very well read in the basis of all of this work. This pleased her, and we were able to talk about things at the appropriate level with her. We went through my family history, as well as what we knew of our anonymous sperm donor, the only notable detail that my mother has a sister with an unidentified, non-chromosomal mental challenge. 

She then went on to outline the possible reasons for our nuchal translucency of 3.8mm (>3.5mm):

1. Normal variant- Dumplin’ is just fine, and just measures a bit big behind the neck.

2. Trisomies 21, 18, and 13.

3. Heart defect.

4. Noonan Syndrome, which has an associated cardiac issue.

She talked about our Non-Invasive Testing Options:

1. NIPT blood test (aka Panorama, Harmony, Verifi) – covered pending government funding on a case-by-case basis, and can be done anytime after 10 weeks pregnant. This screens for the Trisomies with 99, 97, and 87 percent accuracy.

2. Fetal echocardiogram done at 15-16 weeks to visualize the heart.

3. Detailed fetal anatomy scan done at 15-16 weeks and then again at 19-20 weeks- looking at soft markers and visualizing the heart again.

Then she went through the Invasive, but “Gold Standard” diagnostic tests, the CVS and Amniocentesis. I’ll be too far along to do the CVS, but the Amniocentesis would be to diagnose any conditions related to abnormalities in the chromosomal collection or DNA that can be found in a karyotyping and microarray. They also look for deletions and duplications in the DNA sequence that are known to be pathological. Apparently 1.5-2% of the population possess these deletions/duplications that are associated with known learning disabilities. Since few people have actually had their DNA sequenced and tested, they might not even know this! This was fascinating to me and DW, being teachers who deal with a lot of at-risk students, and those with diagnosed and undiagnosed learning difficulties. 2% is really quite prevalent.

After outlining our options, we explained our choice to go the non-invasive route first- NIPT, fetal echocardiogram, and anatomy ultrasound. I told her that we had already applied for funding for the NIPT but hadn’t heard back yet. Yesterday, I called the Ministry of Health to inquire on the status of my application (faxed in by my family doctor’s assistant on April 22nd), and found out today (April 28th) that they never ever received it!! I was livid, but channeled my energy into our option of re-applying for it through the genetic counsellor. So we refilled in the paperwork and she resent it. Apparently, the Ministry of Health has ONE fax machine for all of the applications for non-provincially paid lab and diagnostic tests! When she tried to send in our application, she kept getting busy signals. So I guess she’ll have to keep trying… What a waste of skilled personnel!

Anyway, hopefully we find out in a day or two about the NIPT funding, get the blood test done, and wait another 10 days for the results. Fingers crossed for a speedy turn around time, as I feel like the waiting has been really hard on both of us. 

13 Weeks

Dumplin’ is the size of a peach or a jalape├▒o now. My belly hasn’t really changed since week 11, which has me convinced that my “bump” was definitely more bloat than bump. Maybe it’s shifting more to being a bump than bloat these days. I noticed a gradual decrease in the bloat after I stopped the progesterone suppositories, which makes sense.

I haven’t been sleeping well ever since last Friday’s abnormal NT scan. It’s weird, but it kind of made me go through some of the stages of grieving, even though nothing definitive has come up yet. I guess considering all of the possible outcomes has brought out a lot of feelings- for both myself and DW. We’ve both been crying pretty much everyday, and then feeling guilty for not celebrating Dumplin’ all moments of the day. It’s kind of like being in limbo- we’re scared to act as if everything is perfect with the pregnancy, in case… Just in case we’re let down again by life. But by preparing ourselves for the worst possible outcome, I have felt bad about how I’m treating Dumplin’. I haven’t allowed myself to be as connected to her, I’ve pretended that she doesn’t exist. It’s terrible, and I feel super bad about it. So as of yesterday, I told DW that I’m going to pretend we never got this stupid NT test done, and continue loving and baby dreaming about Dumplin’. I think she must be able to sense how I feel about her. I love her so much. We both love her so much. She is safe inside me. 

My family doctor has been amazing with trying to get us in to see the genetic counsellor (this Tuesday), and with submitting paperwork for funding the NIPT. We are still waiting to find out if we’ve been approved, and it’s taking longer than I expected. I thought I’d hear back by now. 

I’m still spotting a couple of times a week. I’ve noticed it happens a couple hours after I’ve had an orgasm or have been physically active. I’m not sure about the status of the SCH, but I’m assuming it’s still around. 

As the weather gets warmer, I find my dreadlocks to be a bigger and bigger pain. I love them, and feel most like myself when my hair is in natural dreads. It’s such an easy hairstyle too- I pretty much don’t do anything to them. Because I’ve had them so long now, they are self-maintaining. My longest dreads reach halfway down my back, and they are gorgeously mature. The problem is that they’re getting really heavy, and when I wash them, I’m nearly putting my neck out because they’re waterlogged. They are also super insulating around my neck and shoulders, which makes it hard to sleep sometimes. The weight of them is also starting to pull too much on my hair follicles, and I’m getting scalp irritation in some areas of my head. For all of these reasons, I have decided to part with my dreads. Now I bet a lot of you are wondering if I have to shave my head, and the answer is no. I’ve been patiently combing out each dreadlock. Since they are natural dreads (knots form on their own, and with my own hair) the mats are easier to comb out. I’ve already taken out 10 dreads in two days. I’m shocked by how little hair I have left, but I think it’s just that my hair is naturally very fine. It’s gonna be a thin straggly mess when I’m done, but I am going to Pinterest some hair styles that I might have my hair cut to. Combing out my dreads has always been a very emotional experience for me. I’ve done it three times, and each time it’s coincided with a major life transition. Maybe this time it is my soul welcoming motherhood?

Manhattan Clam Chowder Recipe

Last night I posted a picture of the delicious clam chowder I made. I’ve had a couple of requests for the recipe, which is from a magazine that I bought two years ago:

 
I love this magazine and have enjoyed a couple of recipes from it.

Here’s the recipe for the clam chowder. It can be modified to suit different diets as well. I omitted the flour and clam juice this time, and it turned out awesome. I served ours with a side of hers & hers cheese bread (glutened and gluten-free). The clams give it a lot of protein, and the potatoes add some carbs so you feel a bit more full. 

   
  

 

Having a Hard Time

I just got off the phone with our midwife, and am waiting at my family doctor’s office for my appointment. The midwife says that I should be referred to a genetics specialist right away (and not wait until the rest of my blood results come in) because the Nuchal translucency value was so high. 

I’ve printed off requisitions for the NIPT blood test that can screen with quite a high level of accuracy for the trisomies. Since Dumplin’s NT value is greater than 3.5mm, we might qualify for this test to be covered by our provincial health care program.

*Update*

We applied for funding for the NIPT test. We should hear back in a couple of days. I have to thank Sarah of Hearts and Spiritbaby for their invaluable guidance and advice through this part of the process. I also want to thank all of you who commented on my last post because at the time that I hit “publish”, I was feeling so hopeless and helpless. But your helpful and thoughtful comments helped me out of that hole. Right now I feel like there is a plan. Applications are waiting to be approved. Appointments waiting to be made. There is nothing else that I can do. It’s out of my hands. 

I met with an old friend of mine from teachers college for lunch today. I caught her up on our year while we inhaled gluten-free pizzas from Magic Oven. She is an awesome lady, and such a good listener. She has Celiac Disease as well, and just recently had her entire thyroid removed due to fast-growing nodules. She spent last year teaching up in a northern community, and I loved hearing and seeing pictures of her experiences there. She is also a physics geek like me, but can’t seem to get a teaching job because frankly, there really are none available. It sucks because she is so good with at-risk kids.

Lots has been going on over here. I have just been so consumed by this abnormal NT scan that I haven’t had the balls to catch y’all up. I’m also sorry if I’m not as good at commenting lately for the same reason.

Here’s a quick list to catch you up:

– We might be going on strike due to the outrageous conditions being imposed on our teaching contracts (it’s not about money, the government wants to do stupid things to pay down their self-made debt. Things like removing the cap on class sizes and other ridiculous things that they are not publicizing). This means that as a two-teacher household, we will not be getting a paycheck from our employer if we go on strike. Money is gonna be tight.

– I am finally done with those nasty Endometrin suppositories! 

– I was offered (and accepted) the job that I applied for at a different school. It doesn’t start until September, but it’s 7 minutes from my house (compared to 45), and I’ll be teaching with a lot of my friends. I’m so relieved and happy about this.

– I started knitting Dumplin’ a baby blanket. It’s similar to the Chevron pattern that Molly from Hound Mamas made for her little girl. I’ve got a lot of random yarn, and so far I’ve just been working on the cream colour section. I thinking of making it cream- grey- cream- pale green- cream- grey- cream

I also made a delicious Manhattan clam chowder:

 
I made a huge batch yesterday, which became dinner for today because I spent the entire afternoon crying. Thank you to the good friend that texted with me (you know who you are). Please keep our Dumplin’ in your thoughts and prayers. Fingers still crossed for a healthy normal blood screen. We love you Dumplin’.

12 Weeks: Worried and Lost in the Woods

Today was supposed to be a wonderfully happy day. I’m 12 weeks pregnant, and DW took the day off for Dumplin’s Nuchal Translucency ultrasound. We’ve been anxiously awaiting this day all week. I wasn’t originally going to do the NT scan, figuring my odds of having a baby with a trisomy were low, being 32 years old at the time of egg retrieval. However, since DW hasn’t had a chance to see Dumplin’, I figured it would be a good opportunity for her to connect with Dumplin’, for it to be as real for her as it is for me.

We started off the day really nicely  with a hike at the conservation area with the dogs. Juno found a deflated soccer ball and we played fetch in the water for a long time. Clem ran around, with a stick in her mouth, chasing after her big sister. The sun was shining, and there wasn’t a cloud in the sky! It was also unseasonably warm at 22 degrees Celsius. I felt like I had found a little piece of heaven.

A bit after noon, we arrived at the fertility clinic, which is where we chose to have the NT ultrasound done. We could’ve gone to any ultrasound lab, but chose the fertility clinic because I’m comfortable and familiar with the place and the staff. 

Big mistake.

There were many fuck-ups today:

1. Rampant homophobia- The sonographer wouldn’t let DW in the room for the ultrasound, even though partners are allowed. She said that she’d call her in later. She started the transabdominal ultrasound, and had a lot of trouble trying to measure the NT because of Dumplin’s position. She tried and tried, digging into my belly, and I eventually fell asleep on the table. She huffed and puffed about how hard it was to get a good picture, then sent me to the washroom to empty my bladder so we could try again with the dildowand. On the way to the washroom, I saw DW in the waiting room, looking super concerned. I guess an HOUR had passed, while this tech tried to get an appropriate picture. I went back and we did the transvaginal ultrasound, visualizing Dumplin’ a bit better, took some measurements, and then we were done. I was confused. Done? But my wife hasn’t gotten to see the baby yet. She huffed and puffed again, and then called DW in. She gave a mediocre visual of Dumplin’, pointed out her arms, legs, stomach, and then called it a wrap after what felt like 1 single minute. She didn’t even show her Dumplin’ long enough to watch her move (she was moving a lot when the dildocam was in). She was rude and totally discriminated against us because we were gay. Prior to this visit, this same tech has always been super nice to me, chatty even, but I always came alone, and I guess she assumed that I was straight. Despite promising to let DW be involved in the ultrasound, she totally intended not to honour her word, or DW’s right to be involved as a parent. She restricted DW to standing in the far corner of the room, opposite from me, and had her back to her the whole time. I don’t think she said a single word to her.

– I had to do my IPS blood work at a different lab, but the fertility clinic wouldn’t give me back my original requisition for the ultrasound (or even a photocopy), saying that I wouldn’t need it. I argued with them three times, as my midwife explicitly said that I would need to bring both to the blood lab. The receptionist at the fertility clinic became annoyed with me, went on a rant about how much she hates midwives, and then sent me away without the requisition and measurements from today’s NT scan. When we got to the blood lab, the nurse wouldn’t accept my blood requisition without the ultrasound requisition and measurements. Faaaaaaack. I was right. I frantically called the fertility clinic, which stopped answering their phone and closed up for the weekend. I ended up calling their head office and bitching to them, and eventually the rude midwife-hating receptionist faxed the requisition. 

– Abnormal NT on ultrasound- the cut off is 2.5, but the show concern for anything above 2mm. Dumplin’s NT was 3.8mm. I could see the bulge on her ultrasound and was nearly in tears while I watched the sonographer measure it over and over again, 3.6, 3.5, 3.8…. They are supposed to report the largest value. This means that there is a chance that Dumplin’ has trisomy 21, 18, or 13, or a heart defect. I have spent the day crying and obsessively googling related terms. DW and I went out for dinner and did some shopping, but we’ve both been trying to process what this means. 

Dr. Google has been less than hopeful in terms of what I should expect. DW and I have talked about doing further testing like an amniocentesis to get a definitive answer. The way this IPS/NT testing works is that I have to do IPS part two at 16 weeks, then we get results when I’m 18 weeks. That is a long time to wait for answers. We are both trying to be optimistic about this, as obviously we want Dumplin’ to be healthy, and realize there is a high rate of false positives for the NT test. However, it seems that in our 3+ years of TTC, we’ve fallen on the rare and shitty end of the statistics more than once: infertility, RPL, miscarrying a chromosomally normal embryo…

My midwife appointment isn’t until 15 weeks, but I don’t think I can go that long without some answers. I plan to see my family doctor next and ask if she can requisition a repeat scan. I also want to do the amniocentesis if it remains high, so we have something definitive.

I woke up this morning like it was Christmas Day, excited to see our little Dumplin’ and share that moment with my wife. Instead, we were treated with discrimination, and were given news that there might be something terribly wrong with our Dumplin’. 

Here is our beautiful Dumplin’:

 

Crown Rump Length measuring four days ahead at 12w4d, with a heart rate of 170bpm.

Please please send us your hopeful thoughts and prayers for our little one to be healthy. 

11 Weeks

  

This past week has been very similar to last week in symptoms. Still nauseous, still (but less) tired, the occasional headache, and spotting here and there. I’ve been experiencing some insomnia again though. I’m falling asleep fine, but waking up many times in the night to pee, and sometimes unable to fall back asleep. I’m also a bit anxious again, but there’s some work stuff going on, and I’m stressed by the uncertainty of it all. I don’t want to post about it yet, but will probably have some news for you in two weeks. An opportunity has come up for me to potentially be a lot happier, and I’m in the midst of jumping through some hoops. Hence my lack of posts and comments on here. I’ve been busy!

The weather has been weird lately. We had a snowy Easter, then tons of rain the past few days, and today it’s 15 degrees Celsius! I took the dogs out today, and many sections of the conservation area are flooded. For example, this picnic table is not normally under water.

  

My dogs are a bit safety dumb, and decided to go swimming in the very fast flowing creek. Juno, the big dog, is a very strong swimmer, and got swept downstream despite her efforts. The little dog, whose body type is best described as a lead bowling ball, decided to try to rescue her big sister, and almost got pulled right under the water’s surface. I ran along the water’s edge, hoping they’d find some shallower area to climb back out, and was so scared that the little dog would drown, that I almost jumped in myself. Thank goodness, the both got close enough to an edge to climb out. No more heroic acts for a while okay, Clementine?

Yesterday, I had a midwife appointment. She explained the 12 week fetal ultrasound and bloodwork testing, and did a physical examination. She did a breast exam (boy was that sore), an abdominal exam, and listened to my heart and lungs with a stethoscope. Everything was fine, except, I have a heart murmur.

 

I’m pretty sure I didn’t have one before, so this is likely due to the pregnancy. Apparently 6% of women develop what are called “flow murmurs”  during pregnancy due to the 40% increase in blood volume. The heart valves can’t handle the extra blood, so it regurgitates a bit. It’s supposed to cause a bit of shortness of breath, but isn’t a big deal, and goes away after birth. I have noticed that I’m sort of breath, but I’m still planning on an active pregnancy once the second trimester rolls around. 

Oh, and I’ve gained 8lbs so far. Damn. I knew it was inevitable, with the prednisone, going from high intensity physical activity 5 days a week to leisurely walks 4 days a week, and my nausea-fighting strategy of never letting my stomach be empty. Also, this baby likes carbs, and a whole whack of nasty bad-for-your-health food. For example, today, I had a strong craving for corned beef hash. I almost puked opening the can and frying it up, but it was delicious. Yesterday, I inhaled nearly half a loaf of the most delicious GF rye from Nate’s Bagels. I’m also drinking decaf diet pop a few times a week, which I maybe would’ve had once or twice a year! Since I’m giving into my cravings, I’m getting sufficient calories. The +8lbs confirms this. I’m not beating myself up over this. Once this nausea is over, I will return to a more nutrient dense diet. Until then, I’ve still got 3/4 of a can of corned beef waiting for me in the fridge. Yes, I’m a bit ashamed that I didn’t throw the rest of the can out.

  

My body is changing.

Last week, DW marvelled at my changing pregnant body, and admitted (lovingly, and matter-of-fact) that “Baby, I have a feeling you’re gonna get huge”. I do too, hunny. I do too.

The midwife also found Dumplin’ with the Doppler, and I was able to record her heartbeat for DW, who hasn’t had a chance to see or hear her thus far. Little Dumplin’ heart was thumping away at 160-170bpm. It was such a reassurance to hear it. Funny thing though, is that Dumplin’ doesn’t seem to like the Doppler. She hid shortly after we recorded the clip, and we couldn’t find her again. The midwife said that some babies are drawn to the Doppler, and you can hear the heartbeat louder because they’re coming closer to it, but some babies don’t like it and hide. I guess I won’t be buying a Sonoline B. 

Next week, we’ll be going for our 12 week Nuchal Translucency scan. I’m super excited about this because it will be the first time that DW will see our little growing baby. I’m sure there will be tears!