Monday, January 28, 2013

Another unique aspect

There are so many things about this pregnancy that are totally normal, including Naomi's frequent movement and kicking.  ("They" say that anencephaly/acrania babies don't move as much, but I have yet to hear even one mom say that's been true for her.)  She gets the hiccups a lot, and due to that I have been able to tell that she still spins and flips directions frequently, based on where I can feel the hiccups coming from.  I am 37 weeks now, and she's still often breech.  This would cause a lot of panic in a normal pregnancy, yet my OB's think this is great and they hope she stays that way.  Breech being good??  So weird for me to think about, even though it completely makes sense at the same time.

Wednesday, January 23, 2013


For a while now, I've been planning on getting a piece of jewelry to remember Naomi by.  I don't even remember when I started thinking about it, as it's a somewhat common thing to do.  I figured after she was born, I would pick something out that included her birth stone.  Again, that's a typical way of doing things.

Over a week ago, the thought suddenly crossed my mind that anything I choose after she's been here and gone might not end up feeling so special in the long-run.  Why not buy something now that I can wear while pregnant with her, use in special photos with her, and then continue wearing with those memories attached?  I told my husband that I wanted to pick something out soon.  His response was, "Uh, can you wait a few days?"

Sorry if you feel like your surprise was ruined, my love.  Try to take it as further confirmation that you had a great idea. :)

*I've now shown the necklace to some people, and they all said they expected it to be gold based on this picture.  It's actually silver!

Sunday, January 20, 2013

36 weeks today, busy busy

I was tempted to dive into planning everything right after we received Naomi's diagnosis, but then decided to hold off until further along in the pregnancy.  And oh look, that second I blinked right there?  Suddenly I'm 36 weeks.  I've spent the last week trying to at least get all the balls to start rolling that need to be.  My first baby came 6 days late and my second came a day early, so while I don't expect to go soon, you just never know how it will work out.  I have a special Naomi to-do list on my Cozi iPhone app and there are 17 things listed, and that is just a list by topic and not by specific tasks.

I realized a few days ago that while my midwife/OB practice have been supportive, they are only part of the care we both will be receiving in the hospital, and as far as I knew the hospital had no idea what was coming.  I used a general contact form off their website and received an immediate reply, and by the next morning we had a meeting scheduled for Wednesday of next week.  I have a list of things to cover in that meeting too, but that's only 10 long.  (Stuff like the Duke study, pediatrician care, etc.)  My goal is to plan as much as possible, and make someone else responsible for as much as possible.  That way when the time comes and I'm in labor, all I have to worry about is giving birth and not stress about forgetting something important.

Tuesday, January 15, 2013

Hat guidelines

Some of my friends are in the process of knitting hats for Naomi.  I saw this graphic in a private group I'm in and got permission to share it here.  It's not already saved anywhere public on the web, but the credit goes to Alie Jones who blogs at

Click on the picture to see it full size.  The text says "5 inches from base of neck to top of forehead" and "7 inches from ear to ear (over top of the head), 7 inches around the back of the head at base of neck."

A small string is definitely helpful to keep it tied on.  Also some varying sizes are good, as we won't really know what will work best until we try them on her.

Monday, January 7, 2013

The Duke NTD study

A while after we received Naomi's diagnosis, I joined an online support group for mothers of anencephaly babies who have chosen to carry to term.  (While technically Naomi's diagnosis is acrania and not anencephaly, the two tend to be clumped together.)  From this group I learned of a research study being done by Duke University, and I contacted them about participating.

Heidi at Duke was very gentle and compassionate when I spoke to her by phone.  She explained the basics and made it very clear that there would be no direct benefit in participating for me or my baby as far as treatment, etc.  She asked me (a few times) whether I wanted to participate.  Of course!  Granted I have a bit of science nerd in me combined with an appreciation for research studies, but I can't imagine why anyone would think this was a bad idea or be unwilling.  Participation involves one blood sample from me, one from the father, and a blood cord sample from the baby.  They also want a few pictures of the baby's head without a hat covering it, and dh and I will have to fill out some detailed medical questionnaires.

Heidi also asked if I had any other questions.  I told her how the MFM specialist had said that acrania was NOT a neural tube defect, yet this study included acrania babies.  I'd done some googling and not gotten a clear answer on whether it is or not.  She said that there is disagreement among the experts as to whether it is or not, so basically, we don't know!  So, another good motive for participating in this study.  (She didn't say that, I am.)  If they don't get more info, they can't figure stuff like this out.  The vast majority of anencephaly and acrania babies are aborted, which means the opportunity is no longer there to learn more about how to prevent this from happening in the first place.

Duke mailed me the kit and a packet of info.  I will need to make sure the kit goes to the hospital with me to collect the cord blood (and get the blood draws from me and dh, which can be done at a different time if need be, but is easier to just do all at once to mail together).  The package came in during the Christmas rush so I'm just opening it now.  One of the midwives asked me to bring it in during an appointment so that they'd have time to look at it and make sure they don't have any questions about what they will need to do.  They do not want possession of it until I'm in labor as it will surely get lost in the office or hospital if I leave it there beforehand.

Saturday, January 5, 2013


Naomi gets hiccups as frequently as her big sister did in the womb.  Fourth time today, I think.  Big brother rarely got them in the womb.

Most of the risks of carrying to term with acrania or anencephaly are the same as the risks of any other pregnancy, except there is a higher chance of polyhydramnios.  Luckily for me, Naomi swallows great (as seen via u/s) and I am still measuring a little small for my dates.  In severe cases of polyhydramnios, mothers can end up measuring 8+ weeks ahead due to the enlargement from the extra fluid, and/or have to get the excessive amniotic fluid drained off (which is not comfortable or an easy procedure to have).

Wednesday, January 2, 2013

All caught up now

Since my first post has scrolled off the home page now (click "older posts" at the bottom to see it all), I'll explain that everything posted so far was just done so in the last few days.  I changed the dates/times to match when those events were occurring, I wasn't keeping the blog a secret. :)  I'm all caught up now though so future posts should happen closer to real time... and should feel more like a blog and less like a book report.