Rachel's Race

Next Saturday, my friend Stacy's non-profit Baby Rachel's Legacy will be putting on Rachel's Race.  It is both a fundraiser and a way to spread awareness of anencephaly.  (Which is technically a slightly different diagnosis than acrania, mostly related to suspected causes, but same end result.)  There will be four different anencephaly/acrania families represented at the race, including Team Naomi.

I have been very negligent in preparing for this event!  There are 16 members right now, with 12 adults and 4 kids.  I've had one donation come in from a family member.  But I didn't get t-shirts designed, haven't gotten any donations from local businesses, haven't done fundraising, etc.  So now?  Now of course I am going to see how many of those things I can get done in six days.

If you are a local friend who wants to join in the race and haven't registered, you can do so here.  You can join Team Naomi as either a runner or walker.  The paths for each are different and the walkers will actually come right by Naomi's grave.  Naomi's grave is a few rows away from Rachel's grave and I will be manning a table in that area with pictures of our babies and other info and mementos.  If you aren't local, there is also the option of joining as a "virtual walker."  It's basically a way to donate and intended for those unable to join due to geographical distance.

Right now Naomi's grave is decorated with a ladybug theme and some yellow accent garden stakes.  Instead of doing official team t-shirts, I am asking everyone on Team Naomi to wear a red shirt.  I have also made a Facebook group for Team Naomi members to connect with each other for planning logistics.  If you aren't in there already, it's because I don't see you on the event list for the team.

Now for the fundraising...  Baby Rachel's Legacy has officially gotten their 501(c)3 approval!  So all donations are tax deductible.  If you are able and willing to donate, you can either do it through the paypal tab here or you can give it to me directly.  Giving it to me directly means nothing will be lost in paypal fees, but do whatever works better for you.  I just ask that if you pay online, let me know so that I can track it as part of total funds raised for the team.  We will not be able to access online donations the morning of the race to account for it.

I think that covers it, but let me know if you have any questions.  See you Saturday!

This was taken in the middle of May, which is the beginning of spring here.  The grass has grown in nicely since then.  I have a new kissing ball made by Stacy that will be hanging on the shepherd's hook the day of the race.

15 hours, 15 months, 100 gallons

On my birthday post, I said I "might go for just a bit longer."  Well I guess I've done that.  Dropping to only two pumps per day made it incredibly easy to just keep going.  About a month ago it occurred to me that weaning at 15 months would be cool since Naomi lived for 15 hours.  Then a little over a week ago I was waffling, so I thought I would sit down and calculate my ounces again, since I had not done that since the birthday post.  I was blown away to see that I was at 99 gallons!  I had really thought I was too far off and output was too low to reach it.  Not only that, but crunching numbers showed me that if everything was maintained I would hit 100 gallons at exactly 15 months.  The beauty of these numbers all aligning makes all the measuring worth it. ;)  (Although seriously, if I am ever exclusively pumping again for any reason, I won't let myself even start tracking it this closely!  Measuring to the milliliter is nuts.)

Because I didn't wind down over this last week, I'm not actually done today.  I am only getting 12oz a day (less than a third of what I was getting a year ago), but I don't think it's healthy to go cold turkey, so there will definitely be some more gentle weaning time.  It is really hard to mentally accept the idea of not pumping anymore though.  All that stuff they say about creating habits is true.  The groove of sitting down to pump, pouring and freezing milk, washing parts is entrenched into my day.  It still takes great mental effort to even grasp breaking this routine.  It's my autopilot that my day is built around.

I hit the 100 gallons with my morning pump, but forgot to take a picture.  Between that and knowing I won't be home tomorrow morning, I decided to do "one more" full hour-long pump tonight, shown below.  So I'm not done like I thought I would be, but I'm closer, right?  That's what I keep telling myself. ;)

(Six ounces.  In my pre-EPing days, this would have looked like a lot to me!)

Emmanuel John

Last week, Emmanuel John was born with the same condition (fetal acrania) that my daughter Naomi Grace was born with.  I was privileged to meet and hold him when he was one day old.  He lived for FIVE days, wow!  This slideshow was from his memorial service yesterday.  A beautiful baby who will never be forgotten.

Happy 1st Birthday, Naomi Grace

One year.  It's hard to believe.  For the last year, anytime someone has used the phrase "that feels like a lifetime ago," I think to myself, that WAS a lifetime ago.  A whole life has come and gone in that short frame of time.  Fresh cut flowers live a longer life than Naomi did.

Everyone wants to know how I'm doing, and I still haven't come up with a satisfactory answer for them.  Or rather, for myself, since they would be fine with me saying just about anything.  I'm the one who cares about speaking with precision and the words often fail me.  As of today I do have a way to word my answer to the "how many children do you have" question.  I read it in one of my support groups.  I can say that I "have had three children."  As I've written before, I don't like to use have by itself as that is not accurate.  I usually don't want to throw out the full answer right off the bat, when it's still uncertain whether this is polite small talk or a real conversation.  This phrasing is accurate yet not a complete unloading, which is my personal preference.

I thought the holidays would be tough but they were fine.  Christmas 2012 was a nice lull time in my pregnancy with lots of positive memories, so I think that lent itself to Christmas 2013 being easier.  For my Christmas present, my mother-in-law printed out the majority of my blog on nice heavy cardstock and had it bound.  It is nice to have something tangible since we all know how website services like this wane over time.  (Anyone remember geocities?)  I still have a list of gifts that I'd hoped to acknowledge and share with you all here...  As of today there is another lengthy list of thoughts and gifts for me to respond to.  A delivery of fresh flowers, a stack of cards, and numerous Facebook messages that I haven't even started to read through yet.  At this point I feel guilty for so many balls I've dropped rather than return, that it's hard to even start with one of them.  But at least for today, I wanted to just experience the day rather than have the computer sneakily suck it away from me.

I'm actually writing this from a hotel lobby in SoCal.  (I know, I know, I shouldn't admit to not being home online, but there's no way around it and I do have that ferocious guard dog protecting the house.)  I'm in the lobby with the occasional chatter of employees behind me because this is the closest I have come to getting even one minute of quiet since arriving here.  (Definitely didn't think it through with having 4 people in one hotel room and expecting an ounce of alone time.)

So why am I in CA?  My husband was asked to come out here for work for two months.  Our daughter's school break fell right in the middle of it, so we decided to come visit.  One of my biggest hesitations in coming was thinking people might think I was "running away" from Naomi's first birthday.  But that wasn't it at all.  It was just important to me to be with my husband today, which I think most people would understand.  A couple friends even stopped by Naomi's grave on my behalf for me.  I picked up a nice cake last night that we enjoyed before heading to a friend's house for dinner.  It was a last minute plan that included getting to meet a long-time internet friend who lives in Alberta.

I am still pumping.  I can't believe I made it a whole year!  As of this week, I'm down to just 2 pumps per day.  I don't know how long I will maintain that before dropping again.  I have an app on my phone that has allowed me to keep a detailed log of my pumping.  Here are my total numbers.

Total number of pumps: 1,516
Total hours: 1,164.38 (which equals 48.5 days)
Total milk: 340,167ml (which equals 11,338.9oz or 88.59 gallons)

Of those ounces, 7,192 went to the milk bank, 840 went to a local baby, and the balance has gone and is going to a very dear little boy who is a family friend.  He is an older baby but has several serious medical conditions, and his mother reports that him continuing to receive breastmilk is likely the key to him managing to stay out of the hospital for the last few months.While they would never pressure me to continue donating, it is hard to even talk myself into quitting with this, so I might go for just a bit longer.  (Which is exactly what I've been saying for almost a year now...)

It's sometimes awkward for me to talk about the pumping, not out of physical modesty, but because of the intensely positive and overwhelming reactions it elicits.  I think I can manage to be arrogant enough on my own, I don't need assistance!  But I figured today would be a good day to share, and if I'm celebrating it with everyone else, then maybe it won't feel like such a spotlight I'm standing in.

One more thing.  There is a woman local to me who I share some random coincidences with.  Ten years ago, we met at our small private liberal arts college that is 12 hours away from here.  (She is from this area, I am not.)  We did not know each other well but had some upper level classes together.  She spotted me at a church a few years back then we ran into each other at my old job, and we have randomly seen each other at local mom events over the last few years.  We now have something new in common - her fourth baby due in April has an acrania diagnosis.  If I had thought about it ahead of time, I would have realized that eventually I would meet other future loss moms, seeing as I've known a few who have gone before.  But this soon, and for it to be someone I already knew, and for the exact same diagnosis (even rarer than anencephaly) was shocking.  We have gotten together a few times and I offer whatever I can, but it doesn't feel like much.  This is not the kind of club where you are happy to see new members joining.

If anyone is wanting to do something in honor of Naomi's birthday, making a meal for this family would be one thing you could do.  There is a sign-up link I can share with you.  Another suggestion would be to donate to The Shepherd's Crook, especially if you specify it for the adoption of Lilyan Rosenow.  She has severe medical problems and needs to be adopted quickly so that she can begin treatment and get her urgent surgeries.

Well, I had hoped to post on Naomi's birthday and it looks like I will meet that goal with 8 minutes to spare, since I'm on west coast time.

Happy birthday Naomi.  Not an hour goes by that you are not in our thoughts.  It hurts to be moving "further away" from you, yet easier to see the blessings you have brought to our family and to so many others.  Thank you for being you.

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.

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.

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.
 

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...

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.

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.