We had another ultrasound at the hospital today and got to speak with the perinatologist again. I am really glad we went. It was very informative and while not everything is looking up, I found it quite comforting. I definitely think that was a blessing from the Lord. The perinatologist was great and I'm so grateful we got to meet with her again.
We learned a lot. Some stuff we already knew and some stuff we didn't already know. I'm hoping to record the majority of what we saw on here, but because there's so much it may not make complete sense and I may miss some of it.
Emma is definitely restricted in her growth, but not as bad as we thought. The measurement of her femur puts her around 28 weeks (making her only 3 weeks behind). The measurement of her abdomen puts her around 27 1/2 weeks. There is no way to get an accurate measurement of her head, so those were the only two measurements. The perinatologist thinks that Emma has a chromosomal abnormality (likely either Trisomy 13 or Trisomy 18) and so the placenta is probably being affected by that abnormality and that's why it's not providing the full amount of nourishment to Emma. My amniotic fluid levels are right where they are supposed to be (I guess normal is anywhere from 5 to 25 and mine measured at 16). We asked her why I would only be measuring 26 cm (meaning 26 weeks) when Emma is bigger than that and there's not a lack of fluid. The perinatologist said that the uterus measurements are accurate within two weeks either way. So my uterus measurement of 26 cm is right on with Emma measuring 27 1/2 to 28 weeks.
Emma is approximately 2 lbs. and 9 ounces right now. We asked the doctor what that might make her at birth (in about a month) and she said that with Emma's growth restriction she will probably be right around 3 lbs. (which is what I had guessed soon after the diagnosis). The perinatologist agrees completely with my OB (although she didn't say she agreed, she would just tell us her professional opinion and it happened to be the same as my OB's). Emma is at a much greater risk of a stillbirth, so she really does not recommend going all the way to 40 weeks or past. However, she said that we do want to give Emma more time to grow if she'll allow it. She thought that around January 15th was a perfect time. She did say, however, that if there start to be any variations in Emma's heartbeat, we should induce immediately.
As to the other problems Emma has, they all are about the same. There is still water in her kidneys, but it hasn't caused any other problems or damage. There is still a hole in her heart, but her heart's still beating strong (they measured it at 140). And obviously there's still only the two parts in the umbilical cord instead of the three (although it would have been cool if the missing one would have grown back - although I think that's unheard of). The perinatologist did find one more thing that's been overlook in our other ultrasounds (although almost everything but the anencephaly was overlooked in our first ultrasound). Emma also has encephalocele. It's another neural tube defect, but not a fatal one. Wikipedia says encephalocele is "characterized by sac-like protrusions of the brain and the membranes that cover it through openings in the skull." It's on the back of her neck and it basically means that she has a lump there. I haven't looked at any pictures of it yet, so I don't know how else to describe it. Also, they noticed that Emma's hands were in awkward positions. So there could be a malformation there, but they weren't in a good enough position to really look at them.
Back to the Trisomy 13 or 18. We can do the testing for it if we want, but it doesn't make a difference whether or not this is the case. Also, I think that they do the testing through the Duke University study anyways and they said that they would let us know the results if anything came up. So that works for us. The perinatologist said that if this is the case, it's almost better for us because it means it wasn't a folic acid deficiency. It really was just a random and fluke thing (although I almost hate to label it that way because I think this was Heavenly Father's plan for us). It makes the recurrence a little less than if it was a genetic thing or a folic acid deficiency.
The news in prepping for Emma's birth is not that good. Right now, Emma is in the worst position possible for a vaginal delivery (which you might find surprising that she's not breached). Emma is feet first. This is not encouraging because there's several possibilities of things that could go wrong with her being feet first. It's very likely that her feet would come out, but then her butt (a much wider part) would get stuck. While her butt is stuck, it's possible that her umbilical cord could slip out and then get kind of smashed in the cervix area with her butt. This would cut off Emma's lifeline and probably result in death. Also, there's the possibility of Emma getting all the way up to her shoulders through, and then the cervix closing in around her neck before it gets her head out. I think that's pretty obvious how it could cause some problems. The perinatologist said that most babies turn head down because of the weight of their heads being so great. Because Emma does not have that, she very well might not turn head-down. If she were to become breached, it wouldn't be bad at all. It would get the biggest part through first (the butt) and then with how small her head is, the combination of her head and feet together would be a perfect size to slide right out. The perinatologist also made us aware that because of all of Emma's problems combined, she would put the chances of stillbirth at 50 to 60%. Not comforting at all, but I'm so grateful she was honest with us.
A lot of people have asked us about c-sections. Tim and I are leaning towards a vaginal delivery through the whole thing (meaning if it becomes an emergency, still sticking with the vaginal delivery). I can give you a few not very meaningful reasons why if you want. First of all, that's what our doctor suggests and that's what the perinatologists suggests. Both of them have said that they will do what we want, but that's their recommendations. Also, Tim and I still would love to have lots more children after Emma. C-sections have the potential to limit the amount of children that I could bear. Additionally, I want to be as physically and mentally aware and able as I can be after Emma is born, in case she is only with us for a few short moments. So while none of those are deal breakers, they are a few of the reasons we are leaning towards a vaginal delivery. Also, at this point, we just feel right about it. We very well could change our minds as things get closer, but for now that is the plan.
So after this very long post, did I leave anything out? I'm sure I did and I'm sure not all of it makes sense. I'll come back and correct things later if I notice something.
We continue to be amazed at the outpouring of love for us and Emma. Thanks to all of you for praying alongside us in this journey.