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Wednesday, November 6, 2019

Some updates

This pregnancy has had its fair share of complications, and I wanted to update readers quickly. August and September were a little stressful!
I had my routine anatomy scan ultrasound in August, and while we didn't get ANY cute pictures, because this kid NEVER stops moving, we did find out that he or she has pyelectasis, a kidney problem fairly common in fetuses. This is a "watch-out", and may require surgery after birth if it doesn't resolve on its own. However, it's also a Down Syndrome marker. I pulled my other anatomy measurements and, plugging my age and all the date into a reliable risk calculator, realized this baby had a 1 in 64 chance of having the condition. I decided it would be prudent to have a non-invasive blood test to screen.
Now, let me be very clear: I do not consider news that a baby has Down Syndrome to be bad news. It's just news. I absolutely value the lives of those living with Down Syndrome, and we would be happy to welcome a baby with this disease. But it is smart to be prepared for the upcoming challenges, were this the case, so we decided to get the test anyway. It came back negative, which was a relief - despite my willingness to parent a child with Down Syndrome, I feel wholly inadequate to do so! But we still had to schedule follow up for the kidneys, and to try to get a better anatomy scan - baby was moving so much that we missed about half the measurements.

We had the next scan a month later, and now that baby is more crowded and can't really swim away, getting images was easier, so we were able to complete all the important measurements. Unfortunately, the kidneys did not improve, so we're still keeping an eye on that.

More concerning is that the uterine mass that started this whole thing, that has been causing me so much pain and grief for over a year now, grew significantly since my last ultrasound. It's not a good situation: it now takes up the entire uterine wall and bulges into the amniotic space, so there is a concern for fetal growth restriction (right now baby's size is fine). The other concern is that its growth rate, appearance, and perfusion are not typical for a fibroid, and are what you would see in a malignancy. This was the original concern that sent me to the OR back in May, where I found out I was pregnant!
Maternal Fetal Medicine is on board - I still have my regular OB, but they are following me for the mass, the other fibroids, and baby's kidneys - and they recommended an MRI for better imaging due to the concern for cancer. I had the MRI, but it was inconclusive. It ruled out a few (benign) diagnoses, but left us with two potential diagnoses: a degenerating (and atypical) fibroid, versus a leiomyosarcoma. The appearance could be either; my symptoms actually match neither. The first is benign and can certainly be addressed post-partum; the second is a very rare but very aggressive cancer with a poor prognosis. Finally, I was referred to another specialist and got him to read my MRI and his report is positive - he doesn't think the appearance is malignant. We're still watching it - I'll have frequent ultrasounds and additional MRIs if the appearance changes or it continues to grow - but for now there are no plans to deliver early for treatment.

I'm glad to finally have a little peace. At every single doctor's appointment or ultrasound I've had, I've gotten potential bad news, so to finally only have a few minor concerns on the radar is a relief. I am pretty confident baby's kidneys will be normal at birth, as they are only very slightly out of normal range, and as long as baby can continue to grow, I think all will be well. Sure, we still have to take this mass out at some point, but that was already the plan originally! We will cross that bridge when we come to it, and just try to ride out these last two months with minimal drama!


  1. Ugh, you have been through so much. It's hard to have this mass to worry about. I hope it ends up being benign. It's good that all signs point to it not being cancerous, though.

    Paul also had/has pyelectasis. We knew that was a DS marker but since I had genetic testing early in the pregnancy that came back negative, they ruled that out without further testing which was a relief. He had to have an ultrasound shortly after he was born - we ended up staying an extra day in the hospital as they preferred to wait until day 4 to look at his kidney. It was still measuring large and it continues to measure large, although not as large as it was initially so it's normalizing. He had to go through a lot of testing last December to make sure urine wasn't backing up into his kidneys. We see a urologist at our Children's hospital and he's amazing, as is the team there. They specialize in kids so they make it as less invasive as possible. For instance, when they did his IV, it was so smooth - way smoother than my IV. They use some sort of special light to help find the veins to make it easier. Anyways, all that is to say that it has really not been a big deal but has required extra monitoring (Phil jokes that the doctor sees Paul whenever he has a boat payment coming due - ha). At this last ultrasound in Sept his kidney looked so good that he said we just need to see him annually until he is potty trained. So hopefully you guys have a similar experience. We had a pre-delivery consultation with the urologist and he said the pyelectasis is usually only concerning in boys and requires less following for girls. So maybe you'll have a girl and skip all the extra appts!

    I'll be thinking of you. Pregnancy is hard enough without all the extra complications. And the unknown is always the worst! I hope things continue to go well so you can deliver as close to full term as possible! As we've discuss through IG comments, you may need a C-section and if that is this case, don't let that scare you because my recovery was really not that bad. It's definitely painful to recovery since it's abdominal surgery, but vaginal deliveries are tough, too. I had a really really positive c-section experience. My OB was able to do the c-section and we go to do skin to skin time in the OR. I know every situation is different but I had a lot of fear about needing a C-section and those fears turned out to be unfounded. Granted, your c-section would be different since they'll also be removing the mass. But all in all, it can still be a really wonderful experience. And one bonus for me is that I got a ton of pictures of the delivery thanks to the nurse anesthetist. I am not at all squeamish so I really treasure having those photos (which are live photos - so a couple second video). I love looking at the delivery photos. :)

  2. Wow, that's a lot of things to hold in your mind and heart all at once. I hope your visits continue to bring better news. Hard to believe it's not all that much longer til you'll be meeting your little one! (I mean, I'm sure the process has felt much longer for you, but for me it seems like it's flown by.)

  3. Wow. As the others said, so much to deal with. I truly hope it's a fibroid.

    And I also completely agree with and understand your feelings on the DS screening. It's completely appropriate, IMHO, to want knowledge of potential future complexities, and also to be relieved when one aspect of life turns out to be a bit less complex than it could have been.

  4. That's a lot to handle, especially on top of the issues you are having with your foot. You are being really strong throughout all of this and it sounds like things should be okay, but I will pray for the baby's kidneys as well as the mass. You are in the home stretch now, and I am looking forward to seeing the baby!