Thursday, September 17, 2015

Two Months!

The longest shortest time, indeed.  Sometimes it feels like I see them grow day to day, it happens so fast.  The amount they've changed in two months is insane.  Yet, when I think about being pregnant and them being brand new tiny newborns, it seems like a lifetime ago.  Maybe the longest two months of my life!


Happy birthday, Lillian!

Happy birthday, Matilda!

We had a day today.
Some good:

Some not-so-good:

(Imagine this for almost an hour.  The only thing that settled them was being held by me a certain way that is absolutely physically impossible to do with both at once.  If I set one down, screams.  We finally all settled when I laid down on a blanket with both of them and hushed them for a long time.)

It isn't always easy, but I wouldn't trade it for anything.

Tuesday, September 15, 2015

Cystic Fibrosis

Those of you who are friends with me in real life and/or on Facebook will not find this surprising, but it feels wrong to move on with this blog without mentioning it.  This is mostly copied from an email sent out to people close to us, which was modified into a shorter Facebook post.

We found out on Tuesday, August 11th, when she was 3.5 weeks old, that Matilda has Cystic Fibrosis. We had our first appointment at the clinic at Children's Hospital in Oakland two days later where we spent many hours finding out details and what this will mean for Matilda and for us. The team there is amazing and we feel like she will be well-taken care of. The tl;dr is that with the medication and treatments today, it's a chronic not fatal disease and there are new treatments being developed all the time. Basically it's likely to be a pain for us and probably for her but shouldn't prevent her from doing most things. It also means we will be extra crazy uptight parents about hand-washing, taking them places with a lot of people, and people not being around her when even a tiny bit sick, as a small cold can be disastrous in a child with CF.  

There is tons of information that we'll spare you in this email.  :) 
If you are wanting to read more, we've been told again and again that the only valid source of info is the Cystic Fibrosis Foundation, as the changes are rapid and they keep very up-to-date. 

Anyhow, this was a surprise because as part of the whole fertility extravaganza we were both genetically tested for CF mutations, and because our nephew Lex has CF, we were especially aware of the risk and were quite careful about this. I am a carrier, and Ian was told he was not. It turns out that they only test potential parents for about 20 mutations out of the 1800 that exist, and Ian carries an extremely rare mutation they don't check for routinely. It's most common among French Canadians and in the South of France.  Luckily this mutation seems to be pretty mild, as far as mutations go.

Anyway, it was a huge shock, and we are still sort of processing it, but because of our nephew, we know more and are more prepared than most might be for such news. It's a lot less scary having seen someone close to us go through it - and to see that it sucks, but that he's growing up to be a great kid - causing as much trouble as he would have without CF.

So, that was the email we sent awhile ago.  In the meantime, we've had some more appointments and started nightly treatments for Matilda.  We've learned a lot and have a lot of hope.  There are medicines in trial right now that would treat each of her mutations and we have no reason to believe that this won't be virtually cured during her childhood.  Gene therapies are being worked on.  Etc.  It is, though, also scary and heartbreaking and it makes me cry when I think about it too much.  We have our first full official clinic appointment tomorrow, after which they will be once a month for her first year, tapering down after that to once quarterly for the rest of her life (or until things change).  

In the meantime, we are just doing AOK around here.  Both girls are thriving.  They are now about 8 and a half pounds, and we've graduated from weekly to monthly appts with the pediatrician.  I love looking at their weight growth curve next to the 5th percentile growth curve.  They started so far below it, and they are going to pass it any minute now (see below)!  So, keeping them both happy and healthy is the goal, and we seem to be meeting it so far!
July 28th

 September 10th

Next post will be more fun.  I promise!


Saturday, September 5, 2015

What's in a Name?

Soon after they were born, we sent an email off to our immediate families to tell them more about the names we've given our daughters.  If you care for such details, here they are:

Lillian Ada - 
Lillian was my paternal grandmother's name, so our Lillian is named in memory of her.  She and I were extremely close until her death when I was in my early 20s.

Ada, other than just being a name we like, is a great song by The National. 
It is also a reference to Ada Lovelace, the first computer programmer.

Matilda Eliot - 
Matilda is named in memory of Ian's cousin Mathieu who was killed in a car accident in Peru in 2008. He was a passionate teacher and activist who found his calling in the indigenous community of Inza, Colombia. 

Eliot, like Ada, is also really just a name we like. With Eliot, we think of Elliott Smith.

This is the way the world ends
George Eliot, who wrote under the name George at a time when women were not very publishable.
My Great Uncle Ellie (his name wasn't short for Eliot, but the names are similar).

We also decided to give the girls Hebrew names, as is traditional in my family. They don't have any religious connotation, but I just felt like if someday they felt like doing something Jewish-y (a bat mitzvah, a ketubah at their wedding) they would have names to use given to them by us that had meaning for us as a family.  I also wanted to make sure they weren't super religious names or names that meant, like, "my brother is awesome" or "my dad is rad" or anything else so patriarchal.  So.....

Matilda's Hebrew name is Margalit Bracha (מרגלית ברכה). Margalit is in honor of Ian's paternal Grannie, Marjorie, who is still kickin' it at age 99!  . 

Bracha was the Hebrew name of my maternal Nannie, who died of breast cancer in 1980.

Lillian's Hebrew name is Nachal Rani (נחל רני). Nachal is a word for river in Hebrew, and it's a boy's name, but we don't care. River is in honor of Ian's Grand-maman, whose maiden name was Rivierre. (Ian's Mum's last name is River, as well). In addition, my parents met on a Kibbutz in Israel named Nachal Oz - which translates to strong or mighty river. 

Rani is in memory of Roger, Ian's late stepfather who had been a lifelong family friend.