Christmas gift from Mémère

Choosing a name

We did not know the gender of our first baby before the birth.  (We tried, she was too modest!)  We easily decided on a boy's name and not a girl's name, and eventually settled on just waiting until after baby was here to make anything official (since it really wouldn't be official until then anyway).  With our second, we did know he would be a boy, but still had two names in a toss up until the final weeks.  We did not share it until after he was born.

I knew I wanted to do it differently this time.  With what little time she will be with us, and all the other emotional craziness that will be surrounding her birth, the last thing I wanted was to be stressing out over choosing a name.  Daddy chose big sister's name and I chose big brother's.  While I had some ideas, I decided that like her big sister I wanted this baby's name to truly come from daddy and not have it be him acquiescing to my wishes.

While waiting for him to come up with a name, I did get my heart set on one that he nixed.  Then he suggested a name that I nixed.  He then suggested a name that I thought I liked.  While my mom and stepdad were up here, we were able to go out on a date and I said that I liked the name and thought we should "finalize" it.  That name is Naomi.  It is Hebrew, a biblical character, and means beautiful, gentle.  He did not have a middle name at all and I suggested Grace, which he immediately agreed to.  I like the way the two names go together (along with our last name), and also as a testament of how God's grace has been shown to us throughout this pregnancy.

Another ultrasound (31 weeks)

After the 27 week ultrasound, the tech generously offered us to come back for free, any time we wanted to.  Ultrasounds are always special, but even more poignant when you know it might be the only time you ever get to see your baby alive.

I wasn't sure if we'd go back or not.  My mom and stepdad were coming up for a visit in December, and after a few weeks deliberating, I contacted the tech again to see if she could squeeze us in.  Living 8 hours away, we don't know how quickly they will be able to make it up here when I go into labor and give birth.  She was able to squeeze us in!  Dh could not come this time but I found going back a second time so soon, and knowing exactly what we would see, meant it was overall a more relaxing and enjoyable experience.  And wow, baby gave us lots of great shots!  She's got super chubby cheeks despite measuring small.  She even blew us a kiss. :)

Sweet friends

Today a group of friends from my mom's group presented me with a gift certificate for some professional photography.  The intent is for maternity pictures but if that doesn't work out or if I don't want to, it can always be used later for a family session as well.  Another group of friends wants to throw me a blessingway and some are knitting special hats for the baby.  I'm so lucky to have such supportive friends in my life!

The big ultrasound

There is not much to report about the weeks in between the diagnosis and our next ultrasound.  My pregnancy is being followed the same as any other normal pregnancy, the only difference being that my medical providers are being especially accommodating of any wishes or preferences I might have.

Some people can find out a baby's gender as early as 13 weeks, but we did not think to ask and they didn't offer any info while we saw the MFM specialist.  As the 20 week mark approached, I found myself nervous about scheduling it and having to "take the next step" in this pregnancy.  Also, it was going to be very difficult to schedule an ultrasound when my husband could be there too, due to his traveling work schedule.

I did not want to go to my regular practice for such an important ultrasound, as the office is very busy and hectic.  Instead I chose to go to a private boutique type setting that does 3D/4D imaging.  I told the tech ahead of time about the diagnosis so that she would not be surprised by what we saw.  Not only did she do the extra 3D/4D viewing for free, but she was able to fit us in on a Sunday afternoon so that dh could be there too.  Finally on 11/18/12, when I was 27 weeks along, we found out we are having a girl!  It was not possible to calculate a weight estimate, but her limbs and such measured closer to 25 weeks.  This is on the small side but still within a normal realm.  After having a 10lb and a 9lb4oz baby, small sounds great to me.  All her other body parts like spine, organs, etc looked fine.

A fuller explanation

Following my other Facebook announcements, there was a great outpouring of love and support, but also a good amount of confusion as to whether I was still pregnant or not, what was going to happen, etc.  I then posted this to give a fuller explanation.

"I've realized that many of my FB friends are now confused about what's going on with me and the baby, thinking I've miscarried.  I did not share the official diagnosis at the time I made the announcement because it's honestly not something you want to go about googling.  There are many horrific images out there, many of babies who have been aborted.

I am still pregnant and the baby is still alive and growing.  While I am definitely at a higher risk of miscarrying than average (all women are at some risk of miscarrying at any point in their pregnancy), it is quite probable that the pregnancy will go full term.  It is only after the birth, after leaving the womb, that the baby has a terminal diagnosis.

The official diagnosis is fetal acrania, which is very similar to the more common anencephaly.  (Anencephaly is a neural tube defect like spina bifida is, acrania is not.)  Basically, there is no skull to protect the brain.  For a more detailed explanation, please see this website: http://karinneclaire.blogspot.com/p/what-is-acrania.html

  This family's story has many similarities to what we are facing.  Local friends might be familiar with Baby Rachel's Legacy: https://www.facebook.com/BabyRachelsLegacy
"Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need."  Hebrews 4:16

Also, I currently have many friends who are pregnant or have newborns.  Please don't feel like you need to shield me from talking about these things.  While I can't predict how I will feel closer to my due date of February 17th, right now it truly does not bother me or bring me greater pain to enjoy your experiences and babies with you.  I still enjoy talking about pregnancy, birth, and breastfeeding, and have two wonderful past experiences that I still like to talk about.  As an extrovert, it's extra important to my mental health (and to K & T's!) that we still be able to get out and socialize and feel welcome with our friends."

After the specialist

From Facebook: "Sad to report that the specialist did not have good news for us today. The baby's condition is 100% lethal with no chance of survival. Very rare, not folic acid preventable, and not genetic, so I am not at any higher risk of recurrence than anyone else is. Very sad for my baby tonight."

Facebook announcement

I had an early ultrasound at 9 weeks to double check my due date as I was not confident of my calculations.  Baby had a great strong heartbeat.  I left that appointment sensing some uneasiness on part of the tech, and intended to call and ask the OB if everything was ok, but did not follw up.  At 11 weeks, the midwife called to say that I needed to come back for an ultrasound at 12 weeks "to check some measurements they were missing."  I went for the ultrasound at 12 weeks and was told that yes, there were definitely some things wrong, but that we would need to go see a specialist for a definitive diagnosis.

At this point, pretty much only family knew I was even pregnant.  On Facebook I wrote, "It's terrible to announce this via Facebook, but better than any alternatives I can think of. I'm ~12 weeks pregnant and due February 17th. But, early ultrasound shows severe issues with the baby's brain development. We are being referred to specialists at Dartmouth and have an appointment on Monday afternoon. Please pray for us."

The pregnancy announcement

With my first two pregnancies, we waited until the end of the first trimester to announce it.  With this one, I decided to tell early when I was just a few weeks along.  Partly because I had some trepidations about it and figured we should celebrate it while we could, and also because my entire extended maternal family was going to be together for our annual family reunion.

With the first baby, we announced it by giving my FIL a "grandfather" mug for his birthday.  It took a minute or two for it to sink in for everyone and figure out what we meant by it.  With the second baby, I had my due date printed into personalized photo calendars.  On Christmas day, after all the presents were opened, I passed out the calendars to everyone present (which included my mother and stepdad, MIL & FIL, and all of our siblings).  Everyone figured it out on their own as they read through the calendar, with my mother being the last one to get to it and then screaming in delight which my brother captured on camera.

I did not think I could live up to the calendar announcement again, and went with something a little simpler.  I did a last minute dash to the store to try to find a "big brother" shirt for my tiny almost-2yo son.  It's hard to find big brother shirts in 12-18mo size!  I did find one at Crazy 8's and tried to sneak it on him while we were doing pictures with my siblings.  I did not even have it over his head before my mom saw me doing something and questioned why I was changing his clothes.  It was not long before she was again shrieking with joy, and we then went up to tell the rest of the extended family as well.

A blog?

After I announced Naomi's diagnosis, several people asked me if I would be starting a blog.  I wasn't sure at the time, as I've never been drawn to blogging before, and this wouldn't be like other special needs pregnancies with constant specialist appointments, changes in prognosis or survival rate, etc.  But now I'm at a point where I know there are people wanting more information but don't want to ask, and I think a non-Facebook-based source to check has some value.  I am going to spend the next few days pulling together old notes to recap what has happened so far, and catch up to where we are now at 32 weeks pregnant (12/27/12).