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.