Tuesday, November 12, 2013

The combs or the long hair

Still here.  Still pumping.  Still all angsty about my lack of blogging.  I feel stuck in a Gift of the Magi conundrum, where the thing I want (writing, or the beautiful combs) is going to require giving up what I already have (pumping, or the long gorgeous hair).  And then what will I write about?

People often ask how long I am going to pump for.  Now I'm often asking myself.  For a while I was always surprised when it was time to write a new month onto the date line of a freezer bag, but even that has become routine.  I have hit the point that I've heard other EPers (exclusive pumpers) refer to where everything just gels and you kind of feel like you could do this indefinitely.  I'm 8.5 months and it's funny because 8 months feels close to only half a year, yet 9 months feels like almost a year.

I noticed a few months ago that my credit card wasn't being charged for the hospital-grade pump I am renting.  I thought maybe the hospital was being nice, or maybe someone had called in and was covering it for me.  It turned out to be a royal mess with all the new Affordable Care Act stuff.  At first I was annoyed because I was being required to return my pump, then I realized that I'd saved close to $400.  (I do already own other pumps, I just like this one the best.)  I thought maybe this was a sign to stop, but decided I didn't want to do it in a hurry, so went ahead and rented the same pump from a different hospital.  (Where I rented it from their gift shop because that makes a lot more sense than renting it from trained lactation professionals who will support and advise me, like hospitals used to do.)

Today I found out that if I want to continue donating to the milk bank, they will need me to do an updated blood test.  So, sign to stop?  I don't know.  I like the idea of going to a year (9 months is almost a year, after all), but the holidays are always stressful.  Or I should say December is stressful with a kid birthday and Christmas, as I usually don't lift a finger for Thanksgiving.

At my peak, I was able to break 40oz in one day.  I used to average 36oz per day.  After travel times and dropping pumps (only three times per day now), I now average 30oz per day.  This is a little on the high end of normal for an EPer.  I definitely do not think I would have lasted this long if my supply had been low, even though every drop is "extra" and never demanded from me.

Every drop I have pumped (except for a couple spilled ounces) is recorded in an app on my phone.  The time it takes to measure out actually feels like more of a burden then the pumping itself, but I can't let go of the data.  I use the excuse that I need to be careful not to overfill the bags anyway.  But really I just like numbers.

I should have some sort of beautiful conclusion here, right?  But my alarm will be going off in in a just over 5 hours from now, and I don't want to delay yet again in posting, so, goodnight.

Tuesday, August 27, 2013

6 months

I had originally intended to post monthly.  It's funny, during pregnancy, you know that things can change at any moment and not to count on anything going according to plan, but it feels like that should resolve after giving birth.  I should be able to plan out my time and do things in the order I prioritize them, especially without a newborn interrupting me, yet life has continued on just as messy as it was before.  I will have a thought pressing on me to blog about, but I'll do it after the kids eat.  Oh wait, after I pump.  Shoot, I forgot to reply to that e-mail.  Someone's calling me.  All littered with the ping of Facebook and requests for another sippy cup of milk or help on the potty.  The only consistent time I have at home without kids needing me is after they are in bed, by which point I am often not in the right frame of mind for writing.

I got hung up on feeling like I needed to explain why I was pumping before I could discuss many details of it.  This was a mistake because I don't think I can ever really express why, and now I've missed out on sharing much of my journey.  (Although really, part of me is skeptical that many would find it as fascinating as I do.)  I have documented it all with photos and logs, but it's not the same rebuilding it later and I groan at "and a great time was had by all" writing style.  I might try to catch up on at least some of it later, maybe...

In my process of self discovery, I have realized just how private a person I am and that I am actually a bit shy.  Now my mother has always bemoaned my private nature, but it didn't make sense to me because I am naturally an extrovert and rarely is there a topic that I shy away from.  I have no qualms speaking in front of a small or large crowd.  But when it comes to the topics close to my heart, I definitely shield myself.  I deal with it in my own time and space and not outwardly.  Unlike with multitasking or time management, where I'm hopeless navigating on my own unless I have a listening ear available.  On issues where every word and intonation counts, I prefer writing over speaking since I have a backspace.  I can pause and let my mind wander before coming back to where I was, to finish grasping at the thought floating out of my reach.

Why am I explaining all that?  Because I know there are many in my life still concerned and wondering about me, who are watching me for cues.  They see me introduce myself to someone else and not mention Naomi.  Meeting new people is always a little awkward, because I don't want Naomi's story to be a prerequisite to getting to know me.  I don't want anyone thinking I am in denial or ignoring my thoughts about her if she is not on the tip of my tongue.  It's more like I want to wait a bit, to have sure footing before bringing forth something so special and personal to someone who is a stranger.  (This is where the shyness comes in too, I don't like unloading such a huge emotion on someone moments after meeting them, because it's so much direct attention on me.  And the idea that they might think I am seeking that kind of attention makes me queasy.)  I am 100% fine with people referencing Naomi by name, asking me questions, or checking up on me.  Mentioning Naomi won't be a painful reminder because I never forget her.  Emotional support from friends and family is not something I am lacking by far, which I am grateful for.  I find comfort in the silence, knowing the support is there even though I'm not expressly calling for it.

I still trip over the question of "how many children do you have?"  I feel like I "should" say three, but technically I only have two with me.  I don't HAVE Naomi, that's the whole problem.  So, still trying to work out my pat answers to questions like that.

I remember learning about grief stages and such pre-Naomi.  I knew grief took a lot of time, but for some reason I thought it would be like one more thing on the to do list.  1) Fix breakfast, 2) shower, 3) cry for 20 minutes, 4) get dressed.  It's not like that at all.  It's not one more thing to fit in the list but an undertow pulling in all above it.  It's not a new independent thing to struggle with, it takes all your normal struggles and intensifies them.  So if you're lazy, you will be lazier.  If you overeat, you will eat even more.  And if your executive functioning skills are the equivalent of a monkey on a typewriter, your house will look like mine right now.  At least, this is what I'm telling myself when I think about how I haven't deposited any of the checks people mailed me for The Shepherd's Crook or how I still have last winter's outgrown clothes in the kid dressers.

"They" say that the worst point is six months out.  I feel like around four months was worse, so I don't know if that happened earlier for me or if I'm just in a lull.  Sometimes having a heads up on something isn't helpful.  I do often wish that I could just STOP the clock and freeze my kids and just have TIME to deal with stuff at my own speed.  To saunter through the condolence cards waiting for me, to carefully choose pictures to print and hang, or to catch up on posts in some of my support groups.  But time and I have never gotten along too well and try as I might, it just keeps passing against my will.

Monday, May 27, 2013

3 months

I had originally intended to post on every month-a-versary, but missed that already at the 2 month mark...  I had a conference that day so excused myself.  I am actually a little shocked it's been a whole month since then, as I was very busy leading up to the conference and my downtime since then has gone by with a blink.  Time still passes with an inconsistent beat.  December through February felt like it was about a year long and the time since feels more like one month.  I'm still pumping and that takes up 3-4 hours a day, spent entirely in front of my computer (or the occasional car ride).  This should feel like a lot of time yet I still have almost a dozen unread Facebook messages to look at.

The spring weather has been lovely and made visiting Naomi's grave easier.  When we go there or sometimes when we drive by other cemeteries, my 6yo will call it "heaven."  Sometimes I correct her and tell her it's a cemetery, and other times I don't.

This is from April 16th when I put the grave decorations around it.  I put them in the corners to help me know exactly where she is once the grass came in.
I snapped this picture quickly on May 18th when all the flowers were in bloom.
I hoped to get a better shot of the above when we went back today, but most of the blooms were gone.  However you can see how nicely the grass is growing in now.
Now that the weather is nice, my husband and I can start walking cemeteries to get ideas of what kind of headstone we want to get.  I don't want to put it off long because I could see it becoming something that gets delayed for years otherwise.

Thursday, April 11, 2013

Meet Naomi

This is the video that my husband and I put together for Naomi's funeral service.  It would not have been possible to capture so much of Naomi's life if not for generous photographers and friends.  Thank you all so much.

Yesterday was the six week mark since Naomi's birth, and while that's not an "anniversary" it is usually a milestone mark in the life of a newborn.  Despite my delay in posting the video, I really do want many people far and wide to see it.  I did not wait because I was embarrassed or hiding her.  I just wanted to be 100% sure about sharing it because it's such a deeply personal thing to share.  I needed to be ready for both the attention and any possible negative reactions.  I'm a little nervous that I've lost the momentum that would have been there if I'd posted it immediately following Naomi's birth, when there was still a large and captive audience.  If you shared my blog during that time, please do it again so the same people who prayed for me then will see this now, and see where their prayers were heading.  And if you comment here on the blog instead of on Facebook, I will be able to look back and reread your messages of love and support anytime I want to in the future (although sometimes I have trouble figuring out who a comment came from if they only sign in with their common first name).

Yes, it's long (17 minutes) and the beginning might feel a little slow with lots of maternity photos, but it gets better after that. :)  For the squeamish among you, there are no graphic birth photos or any of Naomi without a hat on.  Her face is very dark, which is typical of babies with her condition.  Most importantly, she is beautiful.

Here she is...

Wednesday, March 27, 2013

One month

Exactly a month ago at this time, I was cuddling my newborn baby.  It's hard to believe it's been a month.  The days have gone so quickly in between but it still feels like yesterday.  People check in on me to see if I'm doing "okay."  I'm not sure what okay means.  Is it supposed to mean that I spend my days bawling and grieving (and not "healing")?  Or does it mean that I am happy and chipper and going about my business (and bottling up feelings instead of dealing with them)?  Well, I'm somewhere in between those two points.

I'm probably one of the only ones who hasn't minded this extended winter and the fact that we are going into April with huge snow banks still hanging around.  I'm ok with time moving slowly.  I haven't unpacked my hospital bags yet and have a large stack of condolence cards to open.  It's not that I don't want to do these things or that I'm not going to, I just don't feel like rushing.  Because once I do these things, what's next?  It kind of feels like I'll have to "move on" when all my Naomi tasks are finished and I don't want to do that yet.

I'm also moving slowly because of this.

This is what ~600 ounces of breastmilk looks like.  I'm pumping to donate Naomi's milk.  I pump 6-7 times per day and it takes 3-4 hours per day, and I'm actually pumping right now as I type this.  Now granted, spending that much time at my computer in a day is nothing new!  But it means I get sucked into the interwebz every 3 hours, making it a little harder to get involved in much else during my day.  Not to mention planning my day's outings in 3-hour increments.  I can't even imagine being someone who exclusively pumps AND has a baby to take care of.  Seriously, hats off to anyone who ends up on that path.

Besides the cost of time involved, I'm also paying to rent a hospital-grade pump and buying milk storage bags.  Yes, it's ok to call me a little crazy.  I think that fact has already been well established.  I'm doing this for a variety of reasons of which you'll have to read a future blog post for me to fully explain, but what it boils down to is that I want to.  Simple as that.  It's not fully settled how much milk is going where, but the plan is for some to go to the Mothers' Milk Bank of New England in Boston and some will be shared with local moms.

Thankfully I've had a great milk supply, which will never fail to excite me after all the problems I had with nursing my first baby.  This is from my second pump today (after freakishly low results from my first pump of the day).  It's a new record for me!

Another nice surprise today was receiving this beautiful peace plant via FedEx, from my cousin.  She was my maid of honor and despite our lives taking very different directions and rarely seeing each other, she will always be my BFF. <3  It's probably luck that it came on Naomi's one-month birthday, but I'll let myself assume it was intentional. :)

Physically my recovery has been excellent.  Exceedingly easy.  Although I have to go on record and say that the postpartum fuzzy brain is not just due to sleep deprivation from a newborn like everyone says it is.  I get plenty of consecutive sleep hours and still find myself befuddled by simple mental tasks.  I have only recently regained some ability to do basic math in my head, and most of that revolves around increments of 30 and what numbers add up or subtract to 180.  (My exclusively pumping friends will understand this.)

In my last post, I mentioned the picture slide show for the funeral service that my husband and I made.  We do still plan to share it online.  I've been slow partly for the reasons all outlined above, but also because I want to be extra careful that all necessary precautions are taken.  Once something hits the internet, you can't get it back.  Unfortunately there are people out there who will steal ultrasound and baby pictures and claim them as their own.  They do this for money, or attention, or simply because they are mentally ill.  I just need to be thoroughly sure of what I share before we do it.  I am still eager to show how beautiful Naomi was with all of you.

Tuesday, March 5, 2013

Naomi's Song

All of my children have had a special song written for them by their Aunt CJ.  Here is Naomi's.  It was written back in November and Naomi got to hear it performed live in our hospital room.

I know people are dying to know "how I'm doing."  Honestly I've always found that question incredibly hard to answer, even under normal circumstances.  How I'm doing right now might not be how I'm feeling ten minutes ago or ten minutes from now.  It's just hard to gauge yourself too.  This morning we buried our baby girl.  This afternoon we went shopping and bought a Cars headlamp and plastic bowling set for our 2yo, and our 6yo bought herself a $40 LEGO Friends set with money she had extricated from family over the last two weeks.  The tone of our lives is changing moment by moment.  From what I hear, it's going to get worse before it gets better.

This afternoon and evening has been filled with a great sense of relief.  This birth has been hanging over me since August 14th.  I spent five weeks on edge, feeling like I might blink and be in labor seconds later, and everything had to be ready to go.  The last week has been a balancing act of recuperating from birth but also trying to get a lot done before the funeral and burial services.  I have not even written out the birth story yet.

Right now, this moment, I feel like someone who has just finished running a marathon.  Or just finished their last final exam.  The grief is suppressed momentarily while the relief from finishing what is likely the biggest event of my life washes over me.

My daughter's life has already completed, but I'm just beginning to tell you her story.  The slide show we made for the funeral will be put online and I can't wait to introduce her to the world.

Monday, March 4, 2013

Saying Goodbye

Tonight we introduce our Naomi Grace to the world, and tomorrow we say our final goodbye.

Friday, March 1, 2013

Thank you all

Thank you everyone for the huge outpouring of love and support you have shown.  I was keeping up with Facebook early in the induction process then stopped when things really got going.  After the birth, I of course gave Naomi my undivided attention, which means I now have 186 Facebook notifications to catch up on (eventually!  And I think it may be more as I just realized Facebook keeps resetting the count).  So know that while I do appreciate everyone reaching out, it will be some time before I see it all, and there won't be many individual replies from me.

I plan on writing out the full birth story soon, but the brief version is that the induction was very smooth and easy.  I got one dose of misoprostol at around 9:30AM.  That got things going enough that I did not get any other induction interventions.  My water spontaneously broke at 2:23PM which is when I would say real labor began, and Naomi entered this world at 6:46PM.  As far as labor and delivery goes, it was physically easier by far than either of my other births and I feel fortunate in how well that worked out.

As planned, Naomi went immediately to my chest for skin-to-skin contact after she was born.  She did not appear to be breathing and was limp and lethargic.  I asked if she was alive and was told the cord was not pulsing, so she appeared to have been born still.  After laying on me for a bit she surprised us all with a large gasp for air, then was still again.  She then let out a second gasp, after which I asked them to check her heartbeat.  It was beating!  Brian and I both took turns listening to that beautiful sound via stethoscope.  Naomi then started slowly breathing more regularly and pinking up.  She was covered in a thick layer of vernix so stayed against my chest as her skin eventually soaked it in.

The hospital had a private waiting area for our family that was right next door to my room.  After the placenta was delivered and things cleaned up a bit, grandparents and my sister and BIL were able to come in and meet Naomi.  The hospital chaplain also came and Naomi Grace was baptized.  Big sister and big brother came in to meet her and the entire family stayed and celebrated with us until late into the night.

Naomi was a fighter as despite her dropping oxygen saturation levels and struggling to maintain her breathing, her heart continued beating.  We stayed up until probably around 5AM, thinking she was going to leave us soon, until we finally laid down for some sleep.  Naomi slept in my arms and the nurse agreed to check on her frequently for us so that we could relax more.  We still woke several times before getting up around 8AM.  Right before 10AM the nurse checked on us again, including checking Naomi's heart rate.  Naomi was in my arms and suddenly something seemed different about her.  I could not feel a heartbeat so asked Brian to check.  The nurse popped back in for something she had forgotten, so was right there to listen again with her stethoscope and confirmed that her heartbeat had stopped.  It was a very peaceful passing, and Brian and I are both relieved and grateful that she did not appear to be in any pain during her final moments.  We had another 8 hours with her before saying goodbye at 6PM.

We are planning a funeral service for 5-7PM EST on Monday, March 4th.  All friends and family are invited to join us if they wish to, and there will be pictures and video shared of her lifetime.  The burial service will be held the next day, on Tuesday the 5th, and will be private for family only.  In lieu of flowers, please consider donating to The Shepherd's Crook Ministries, designated in memory of Naomi Grace.  http://theshepherdscrook.org/donate/now/  We cannot do anything to bring our baby girl back, but funds donated will help another baby get home to his or her family.

Tuesday, February 26, 2013


I'm 41 weeks, 2 days today and had an appointment this morning with one of my favorite midwives.  I am still not dilated at all and have a low Bishop's score, but we are in agreement that it's time to move forward with an induction.  Due to aspects of the acrania/anencephaly, Naomi's body is not signaling to my body that it is time for her to come out like it otherwise would.  Despite the low Bishop's score, my previous strong birth history will hopefully mean that my body will respond quickly to the interventions and start doing what it's supposed to with just a little prodding.

We were looking at going in tonight but they are fairly busy right now so it's going to be tomorrow morning.  Unfortunately our area is getting yet another blizzard of 8-12 inches of snow expected on Wednesday/Thursday.  I already can't see the road when parked at my house due to the insanely high snow banks, so I don't know where this snow is going to go, but at least it's one thing I don't have to be the one to deal with.  Hopefully the roads will still be relatively clear when we head in to the hospital.

I won't say that I *want* to be induced as of course I would prefer for it to just happen naturally, but obviously there are many things about this pregnancy that I would change if I had the power to do so.  I can't go back in time and prevent us being exposed to norovirus.  I can't snap my fingers and make a blizzard not come.  I can't wish for my body to go into labor and expect it to do so at my command.  I can't just decide for my baby to be healthy and have it be so.  All I can do is keep going forward, trying to make the least worse choices.

Monday, February 25, 2013

Oops, it was a blizzard.

We got well over a foot of snow, but I stayed inside oblivious to it as the men did all the shoveling and also helped the kids build a snowman.  Roads are clear again now and we didn't lose power. 

Logic would say that birth would feel more imminent after passing 41 weeks, since there is less potential waiting time left than there is at 37-39 weeks. But instead it reminds me of the story of the boy who cried wolf. After every day you expect it and it doesn't happen, eventually it honestly feels like it's just not going to.

My next appointment is tomorrow morning, however dh and BIL got hit with the virus overnight.  They are the last two, making 8 out of 8.  Hopefully they heal quickly as obviously we want and need daddy to be healthy and present for the birth.  That factor will probably delay any potential induction plans to be discussed at the appointment.  I am feeling totally back to normal and sipping on red raspberry leaf tea now.


Saturday, February 23, 2013

40 weeks + 6 days + norovirus - blizzard

At this point in my previous pregnancies, my oldest was an hour old and my second baby was a week old.  So I'm officially pregnant longer than I've ever been pregnant before.  Because my second came so quickly (1.5 hour precipitous labor), my stepdad, mom, sister, and BIL all arrived a week ago from out of state.  While everyone knows it's easy to go past an estimated due date, acknowledging it and experiencing it are always two different things.  With my husband being home, five people have missed a week's worth of work waiting on Naomi.  Luckily all of the various employers are being accommodating of our situation.  My mom and stepdad are staying at a nearby hotel and my sister and BIL are staying with us.

Unfortunately, along with our guests came a nasty case of norovirus.  It hit my stepdad on Monday after which he stayed quarantined at the hotel.  Then my mom on Wednesday.  On Thursday at 3:30am, I abruptly woke up to my 2yo standing in my face with what I thought was snot all over his hands.  It wasn't snot.  On Friday, my 6yo's teacher said she thought dd wasn't feeling well as she had fallen asleep at a school assembly at the end of the day.  Later that evening, I walk by her in the living room and she tells me, "Mommy, go look in the bathroom but TAKE YOUR SOCKS OFF, ok?  Take your socks off.  I said take your socks off!"  (I guess I have a bit of a rep for being disgruntled when my socks get wet from water on the bathroom floor.)  The bug had hit her too and she hadn't made it to the toilet.  Later on while moaning and waiting for it to strike again, she turned to daddy and said, "I miss being myself."  My sister and I succumbed overnight, so dh and BIL are the last two standing.  Luckily the grandparents are all well enough now to take over caring for the kids.  The 2yo hit 24-hours without vomiting early this morning (and also slept 12 hours straight, unusual for him), and while the 6yo had much more frequent and intense episodes last night, has also been fine since then.  My sister and I have each spent most of the day in bed, but seem to be recovering well.  Other than the few times I have been in the bathroom, I haven't had other pain or nausea.  Just feeling very drained of energy.  My poor sister has been having "sympathy contractions" though, as she called it.  Her and BIL have retreated to the hotel room.

We are in NH and the weather reports had been calling for a blizzard this weekend.  Luckily the storm has declined and now we're just looking at some crummy roads and a few inches of snow.  Not great but nothing like the Nemo storm from two weekends ago.

I know lots of people are praying for us, and at least some would like to know specifically what to pray for.  So here you go.
  • that my husband does not catch this virus, and if he does that it pass quickly before Naomi comes (this goes for BIL too of course)
  • that I'm able to continue healing quickly, as this virus seems to like recurring for several days
  • that Naomi waits just a bit longer to make her appearance, due to the above
  • safe travel for everyone if we end up going in during this weekend's storm
My next appointment is on Tuesday.

Tuesday, February 19, 2013

40 weeks + 2 days...

Nothing to report yet, but figured I'd check in for those only following me by this blog.  Bags are ready to go, family is here and waiting, just need Naomi to decide it's time!

Friday, February 8, 2013

He's home!!!

While local friends knew about this, anyone I communicate with primarily online probably does not as I tried not to be public about it.  My husband has been living and working in another state 3 hours away since August.  It was something he signed up for before Naomi's diagnosis and we decided to proceed with it anyway.  We actually drove an hour in order to squeeze in the appointment with the MFM specialist to get the official diagnosis a few days before he left, as a local appointment wasn't available until the day after he left.  Through the end of 2012, the kids and I would make the drive and spend the weekend with him about twice a month, and he would come home once a month, and we'd have to skip a weekend, on average.  He was home (and working, but locally) for the week in between Christmas and New Year's, then we went to see him for the long weekend over MLK Jr. Day, but that's all we've seen him since December.  I've pretty much been single-parenting for the last six months.

He has been very careful to not use any time-off, as his employer, the federal government, does not offer any paternity leave.  (Which I think is crazy, as Wal-mart of all places gave him a fully paid two weeks!)  And he only gets something like 2-3 bereavement days.  We had planned for his last day to be Friday, 2/8 and he would drive back either that night or the next morning.  On Wednesday the 6th I heard the weather reports and texted him to say that I thought he should leave a day early.  It's one thing to be 3 hours away with a due date one week away, it's another to be this close and have blizzard predictions of crazy amounts like 20"-40" standing between you.  He made it home early this morning, in time to make pancakes for breakfast for everyone.  He said the roads were fine until the very end, when it was getting thick enough that everyone was choosing to drive in the same lane on the highway that was clearest.  He is home for good now, unless or until we decide he should volunteer to go back.  He will go back to work locally on Monday.

Some have wondered why I didn't just move down there and stay with him as the assignment could have lasted until June.  We considered it, but we did not know until he arrived that his accommodations would be so large (a 2-bedroom furnished apartment that we called "the hotel" instead of daddy's apartment).  We also were nervous about the assignment being cut short for some reason, and disrupting our daughter's school year.  Or how to handle taking care of our home while we were gone.  But perhaps the #1 reason was that I didn't want to uproot us from our social support network here.  The idea of an extrovert like me being stuck in a new area with no friends, home all day with kids while he was at work, did not sound like a good idea.  As nice as it is to see him every day, I thought me being that secluded would actually be more stressful for us all than maintaining a long-distance relationship would be.

On that note, now I will share with you some of the beautiful gifts I have received in the last week, all from local friends.  The first pic is from a blessingway that friends threw for me last Sunday.

And here is a close-up of the hats they have made for Naomi.
The top row is actually handkerchiefs that have been converted into bonnets, and can be turned back into handkerchiefs.  The basket in the first pic is full of these.  It is good to have a large variety of hats so that we have better chances of having one on hand that will fit her perfectly.  I will be giving any extras to the hospital, as they keep a stash of hats on hand for other special babies.

I was presented with another special craft too, but will wait until I receive the finished masterpiece before revealing it.

I have not taken a picture of my deep freezer, but I've also gotten meals from several friends.  It will be so nice to have some ready-made delicious meals on hand, that we can just make when the time is right without worrying about a drop-off schedule, returning dishes, etc.

I still have an incredibly long to-do list to tackle before giving birth.  I would have thought there would be less to do, as we're not preparing the house for another baby, but it feels like more.  I have four sets of paperwork to complete and several people to e-mail.  Lots to keep me busy during this impending blizzard.

Friday, February 1, 2013

A bit of overspending, and some gifts

Last week, I did something shocking.  Something I have never done before in my life.

I paid full price for new baby clothes from Gymboree.  While those who don't know me might not find this statement shocking, those who do will probably be picking their jaws up off the floor right now.

Here's what $104.70 got me:

Now in my defense, I do plan to return whichever outfit and jacket is not used, but I wanted to have both on hand just in case.  The left outfit is for under 5 pounds and the right one is for 5-9 pounds.  I'm guessing she will fit into the one on the right.  Her siblings were 10 pounds and 9lb4oz.  She definitely won't weigh as much as they did as so much weight is in the skull, but even if her body is similar in size, I think she will fit into a 5-9lb outfit.  Even with my big babies, newborns come out so scrunched up that they fit well in smaller clothes at first.  In general, anencephaly babies run small and I'm measuring a little small too (I usually measure large).  The strawberry cap is for up to 5 pounds, and then the other thing is just a little plush strawberry rattle (photo prop).

This week I decided that I should get a few more outfits too, and I went to Kohl's for Carter's outfits.  This time I spent a little more at $148.11, but got a lot more:

The top left outfit is a size 6mo.  I grabbed it anyway so I can remember it to look for a NB size, but looking at the Carter's website, it looks like they only manufactured it as small as 0-3mo.  Everything else is newborn size.  Also grabbed some cute socks and booties.  I'm not sure how well they match up to the non-footed outfits as my 2yo was running up and down aisles by that point and I had to go.  I still need to spend some time deciding which outfits are my favorites and which ones I would use first.  Again, I plan to return the ones that we don't use.  I can't decide about washing them first or not.  Usually I would wash baby clothes first, but I don't really know which ones we will use.  I obviously won't want to wash them after.  I know Kohl's will accept the items for return even if washed (so I could theoretically just wash it all and return what's unused), but I don't feel right doing that either.

I have also received some beautiful gifts in the last week or two.

The gown, hat, and booties on top are from a family friend, my Auntie Helen.  The blanket, hats, and CD on the left are from my mom's coworker Dorothy and her mom.  The white blanket on the right is a prayer shawl from women at my mother-in-law Sue's church.  And the u/s frame and pink heart are from my Aunt Debbie and Gram.  Thank you all so much for your thoughtful and beautiful gifts.

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 http://blog.doublejones.com/category/baby-amelia/

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.