So, in an effort to feel more control, or something, I have been mentally going through a flowchart of events for the next few weeks of this pregnancy.
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Heartbeat - Is there still a heartbeat? - I say 'still' because there was one at the last ultrasound at Week 7, but we know from last time, where we saw the heartbeat twice before the eventual fetal demise, and that while seeing it early lowers the chance of miscarriage, it doesn't eliminate it. After days (weeks?) of worry, we will get this answer tomorrow (Thursday) at an early early hospital ultrasound arranged by my doctor.
-- Heartbeat - No - I should know right away during the ultrasound if there has been another 'silent miscarriage' the behaviour of the technician is quite different when things are fine vs. not. Though they sometimes stick really hard to the "technician can't say anything" and I will need to wait for the doctor at the hospital or my own doctor later in the day to give me the sad news. If this is the case then all further steps stop and I will get a reference to the Early Pregnancy Loss clinic to deal with another miscarriage that will be devastatingly similar to the last one. The following weeks going through that process will be awful and annoying and I am trying not to build out that branch of the flowchart except to know that this time I would like to go through the processes at the hospital so that I can be put under general anesthetic and that the tissue can be tested afterwards.
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-- Heartbeat - Yes - As mentioned above, I should (hopefully) find this out during the actual ultrasound. If everything is still developing properly, not only with a heartbeat but proper size for 12 weeks then I move onto the next step.
Prenatal Testing - When will I get my Enhanced First Trimester Screen (eFTS) done? - My original hope was to not have to do the eFTS because the results are much later than the NIPT (Non-invasive Prenatal Testing, or the blood only paid-for DNA test that I needed to get a redraw for that started this whole emotionally challenging spiral.) The eFTS is also not as accurate so having to rely on those results instead of the NIPT means that we aren't out of the dark tunnel of worrying that we are sitting at the end of this pregnancy. More on this below.
-- Prenatal Testing - Tomorrow - Because my doctor's office was sending out urgent ultrasound requests to multiple clinics and hospitals, they were unsure if the one I have tomorrow will be just a 'viability scan' to basically check for the heartbeat and that is it, or if they will have time at the hospital to do the full eFTS. If there is time, than the ultrasound will just continue on for 45 minutes or so with a ton of measurements being made and I will be sent for blood-work tomorrow as well. This is preferred because we will get the results sooner and everything will be done at the same time.
-- Prenatal Testing - Next week - If they only have time for the quick scan tomorrow then I will be keeping the clinic appointment I have for the eFTS on Wednesday June 29. This will delay results by a week, and as my own doctor is away next week, possibly delay us learning the results even longer. (Obviously if there is no heartbeat, or if there is and the hospital ends up doing the eFTS, I will cancel this clinic appointment.)
NIPT - Did it work from the blood redraw? - I gave blood again this past Friday to try to get results through the DNA system, after my first blood draw the week before came back without results. Based on my weight and the low FF (Fetal Fraction is a measurement of the amount of the DNA found in the blood that isn't mine) from the last blood draw the chance that I can get results from the second blood draw is only 41%. This is why we are moving forward with the eFTS in the likely case that the NIPT comes back inconclusive again. I should know by early next week what happened with the blood redraw.
-- NIPT - Yes and Low Risk - This would be the best outcome of this flowchart, if I was drawing it out the box it sits in would be a starburst or something. The NIPT low risk result is very very accurate, it would mean that we could move into the second trimester of this pregnancy with a huge feeling of relief that the baby is currently healthy and doesn't have the three most common chromosome differences. (We would ignore the chromosome speculation in the eFTS in this case.)
-- NIPT - Yes and High Risk - This would be a very very worrisome outcome. Since NIPT is more accurate than eFTS, heading into the Diagnostic Testing it would be highly (greater than 90%) likely that there are chromosomal abnormalities which would mean a termination of the pregnancy. The next step would be Diagnostic Testing, see below.
-- NIPT - No - This is fairly likely and would mean we have to wait for the eFTS results. The 'no result' as a result in itself actually signifies a slightly higher chance of chromosomal abnormalities which isn't good. The next step would be to wait for the eFTS results which depending on when I got the testing done (see above) will be ready between Aug 3 - 12.
eFTS Results - What is my risk factor? - It will be a long wait for these, but if the NIPT is inconclusive for a second time it is our only option for screening on chromosomal abnormalities.
-- eFTS Results - Low Risk - Definitely a good outcome, this would give us about the same level of relief that a NIPT Low Risk result would, that the baby is currently healthy and doesn't have the three most common chromosome differences. It would just come almost three weeks later.
-- eFTS Results - High Risk - Strangely not as bad as you would think. Because eFTS uses fetal anatomy measurements along with my hormone and protein levels to determine the risk factor it has a really high rate of false positives. It would still be cause for worry but a lot of room for hope when moving onto the Diagnostic Testing, see below. In fact there would be only around a 10% chance that there are chromosomal abnormalities which would mean a termination of the pregnancy.
Diagnostic Testing - Another whole flowchart - If we ended up in this box, either from a High Risk result coming from the NIPT or eFTS then there are a bunch of considerations that I am not dwelling on at the moment. Firstly there are two types of testing depending on how far into pregnancy you are. Depending when I get a High Risk result I made not be afforded a choice between them but if I get it early enough then I can choose between the two, one of which would involve waiting a few weeks. In both cases this type of testing is considered invasive and carries a risk of miscarriage from just undergoing the procedures. There are other health risks for both me, the baby and the pregnancy depending on which test taken. The results take between two and three weeks, so again more waiting and the potential of terminating well into the second trimester, a horrible outcome. The results from either test are considered diagnostic (stronger than screening). But let's cross that path, make that flowchart when we get there.
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Hard to make a flowchart vertically using only blog-word-processing. I can definitely see this making better sense in the more traditional visual form with boxes and arrows. However, this let me get the thoughts and timelines and steps/stages floating around in my head down onto 'paper' to some extent and hopefully help me sleep better tonight ahead of the first step coming my way really early tomorrow morning.
