Where We Are Now

Sorry for the long gap between posts, but really, there hasn’t been much to report until recently. We were just kind of waiting for the next steps, but now we’ve gotten some test results back so I’ll get caught up.

A few weeks ago we went in and talked to the genetics counselor again. She covered the basics with us again of what kinds of genetic issues testing could show, and what testing they recommended we have done. There were two main types. One was having karyotyping done. This would allow them to look in detail at both Christopher’s and my chromosomes to see if anything was out of place, specifically looking for a balanced translocation. That test was one that we both needed, because a problem with either of us could be responsible for our history. However, she didn’t think it was likely that test would turn anything up. This was because typically the problems caused in the case of a balanced translocation don’t normally present with just hydrocephalus. The baby should have had more issues if this was the cause. And it seems the counselor was right, because our tests both came back 100% normal.

The second test was less relevant to our history and was more just to clear us on everything we could to give us peace of mind going forward with future pregnancies. It was a screening to see if we were carriers for anything (like sickle cell anemia, etc). For this one they only needed to test one of us to start, because we both have to be carriers for the same thing for it to be possible for it to be present in child (so if one of us carried nothing, there would be no chance of our kids having anything, regardless of what the other might be a carrier for). Remember the whole dominant/recessive gene thing from high school? Basically everything they’re testing for is recessive, so a kid would have to get two copies to have any issues, like the white coloring in the image below.


If the one tested (me) turned out to be a carrier of anything, we would have the other (Christopher) tested. And as it turns out, I am a carrier for something, a rare kidney disease of some sort. Unfortunately I’ve forgotten exactly what and I don’t have a written record right now, but I’ll update this when I do. (UPDATE- It’s Nephrotic Syndrome Type 2. Steroid-resistant nephrotic syndrome is a disease that causes significant abnormalities in kidney function, often resulting in kidney failure. Symptoms can begin before age 2 years or later in childhood and the prognosis varies. However, with transplantation and careful medical management, affected children can live into adulthood.) That being said, it has nothing to do with River’s issues, and the counselor said that even without testing Christopher she can say the odds of us having a baby with it are very, very low (she actually said that this is why she asked if we were related, because the only reason he’d likely carry it too is if we were). Still, we will be having him do the screening as well just in case.

In the interim we’re proceeding on the assumption that we’ll be trying again in the relatively near future, probably in December. The doctor said to wait at least three cycles after things got back to normal. And more importantly, we have a cruise booked for next May, and I can’t be more than 23 weeks along or I can’t go, so it definitely won’t be any sooner. My cycles are still a bit wonky (last one was three weeks, not cool), so I’m going to start using OPK‘s and temping again so that I can sort of relearn my cycle and so I’ll be prepared when the time comes.

I’m also taking this time to make a genuine effort to get in better health. I’ve made drastic changes to my diet, which is going surprisingly well. As an example, a month ago on game night (we play Pathfinder on Tuesdays) I was getting Subway (white bread, american cheese, no veggies!) with a coke and doritos for dinner. For yesterday’s game night I brought leftover spaghetti squash with pasta sauce, kombucha, raw cashews, and some paleo pumpkin muffins, all organic. I’m also on liquid prenatals (they’re kinda gross, but it’s all organic, derived from plant sources, and much easier for my body to absorb) and some form of folic acid that’s easier for the body to process (L-5-methyltetrahydrofolate). I plan to add fermented cod liver oil in at least a month before we start trying again, but for now I figure I’m pushing Christopher enough on the increased cost for healthier food and better vitamins.

I’ve been to one meditation class and plan to go to another next week. I’m also planning to start yoga classes next week. Christopher has joined a gym, and hopefully he can take me with him this weekend (he’s working a lot, and neither of us are feeling too good today, so we’ll see) so I can see if I like it and join as well. I might even go see a reflexologist. (Honestly, I’m not sure I buy into that at all, but it might help, it won’t hurt, and worst case it’s still a nice foot massage.)

Basically, I’m at the kitchen sink stage of trying to do everything I can to have a healthy baby. Not, to be honest, because I think all these things will make a huge difference, though they certainly can’t hurt, but because at least I feel like I’m doing something. Having the tests come back clear (assuming Christopher’s screening is fine, which I am) is mostly a really good thing. If they hadn’t, all of our options would have been expensive (I was leaning towards embryo adoption, for those who are interested. I had never heard of it until recently, but it’s pretty amazing, and would have been the perfect solution for us if we’d found we couldn’t have our own children), and far more difficult than just trying again. But they would have given us much more confidence that we would have a happy outcome this time. As it is, we’re back in that limbo of not knowing and just hoping for the best, and we’ll be here for at least another year, until we’re holding a healthy, living baby. Still, I really do feel optimistic. I think I may seek counseling to deal with the anxiety when we do get pregnant again, but for now I’m just doing what I can and taking it one day at a time. And hopefully I’ll be making another happy pregnancy announcement in a few months, and this one will end well.



One thought on “Where We Are Now

  1. It’s good to hear from you! I’m glad that you’re on a good path. I hope things continue to look up for you guys. Best wishes.

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