What's in a name?

Eleanor and I have been co-sleeping again. We gave it up when she was four months old and I couldn't take the all-night nurse-a-thon. Four months meant she was a big girl, and big girls can sleep in their own bed. Now she is almost 11 months old, and we have come full circle. I can't take the all-night stand-over-the-crib-arm-hug-a-thon, so she is back in my bed. This has worked well for the past week (look at how cute we are!), but it means that typing blog posts in bed is impossible. I pass the time by reading blogs instead.

I follow a couple of blogs and all of them have a similar theme: babies. Some of them are sick, some of them are healthy, some of them are runners but they are all mothers of babies. This one particular post about naming babies had me reeling. This woman has chosen names for babies that I think are horrendous. She epitomizes everything that is wrong with L.A hipsters having babies young "while it's still cool" and living a lifestyle that makes me green with envy. That is, until I read this post about WHY she named her babies what she did.

Her twin girls are called Boheme and Reverie. Ugh. Bo and Rev. How awful, right? But she has them both backed by songs and poignant moments with her husband and beautiful quotes from Longfellow and I was sold. Those kids are going to love their names when they can explain how they came to be called them. What gets me the most is what her and her husband came to realize after they were born. Bo Rev is Beaux Reves in French, which means sweet dreams. How lovely is that? You can read the full post (along with beautiful pics of the girls) here. 

So it got me thinking, how did we get to the name Eleanor? When people ask, we usually shrug and say, "We just liked it", which is the truth, but not the full truth. It is true we liked old-fashioned names, and Eleanor was short-listed with Vivienne (deemed to butch. "Hey Viv! Get the softball gear outta the truck!") and Evelyn (pronounced eve-lyn. Too complicated when everyone would pronounce her name eh-VAH-lyn GOO-dee and she would forever be correcting them: "No, it's EVE-lyn GOW-dee". Nightmarish stuff).

But Eleanor was a front runner from the get go because of a song from a certain British invasion group - and not the one you are thinking of. We used to tell this story and everyone would go, "Yeah. The Beatles. Eleanor Rigby" and that is definitely an answer that fits, but it is not correct. It is a song by the band that didn't have "Mania" following their name, and didn't have hoards of people burning their records and then later buying them on iTunes. The Turtles wrote a song simply called "Eleanor" and the lyrics read like this: 

You've got a thing about you/ That I just can't live without you

There's no one like you, Eleanor, really

Eleanor, gee I think you're swell

And you'd really do me well

You're my pride and joy et cetera

I thought it would be pretty cool for her to have her own song, and I loved that "et cetera". It's a conjunction for all the wonderful things I feel about her, but am too lazy to write down! Perfect! People always comment on how old-fashioned it sounds, and I always reply, "If she hates it, she'll make a wonderful great-aunt one day!" I like to believe that this foresight means she will lead a long and healthy life.

And like my blogger friend, I had a post-birth naming revelation myself not too long ago. Eleanor's birth date was a very special thing for me for a number of reasons. First, she was born on her due date and second that due date happened to be my birthday. It also happens to be World Human Rights Day, which was the day chosen by the UN to observe the Universal Declarations of Human Rights. And who chaired the committee to pass such a declaration? Eleanor Roosevelt. Amazing.

Katharine: Well have you heard, but something hard of hearing:

They call me Katherine that do talk of me.

Petruchio: You lie, in faith, for you are call'd plain Kate,

And bonny Kate, and sometimes Kate the curst...

As for me, I like to think that I was named for Catherine the Great or at least Katharine from Taming of the Shrew/my favourite Cole Porter musical Kiss Me Kate... A girl can dream, no?

So, kiss me, Kate, thou lovely loon,
'Ere we start on our honeymoon.
So kiss me, Kate, darling devil devine,
For now thou shall ever be mine.

ME WANT FOOD!

I have had so many inspired ideas for posts this week and so many unreturned phone calls, and for this I am truly sorry. We are suffering from a severe case of 'roid rage. I have finally got the baby to sleep after a full day with a whopping 20 minute nap. She is sleeping in the crook of my arm, snuggled up to my chest. This would be cute if I wasn't so terrified of waking her! Kris and I are communicating by text, even though he is two feet in front of me. She is due for a set of vitals, a blood-thinner injection and a diaper change there is NO WAY she is going to sleep through all that. Steroids are making me cranky too.

Wish me luck!

Cancer Baby Playdate

Baby E and Baby L had a playdate

Monkies!

Baby L is very advanced...

She tried to teach Baby E about sharing!

Round 4 or 6 (but who's counting?)

We are back in hospital after an amazing week at home. Some very much needed R&R occurred and I feel like I can take on anything. Apparently, Eleanor does as well. She was quite feisty in the day clinic today, and balked at all the nurses attempts to get her blood pressure or temperature. She used to be really agreeable for that kind of stuff, but after a week off, she is very direct and quick to express her annoyance! She handled her doxorubicin and etoposide like a baby (meaning she handled it like a fucking superstar - there is no such thing as "just a baby" in our world) and is sleeping peacefully. Our transition back to institutionalized life has been nothing short of amazing. Everything went smoothly and stress free.

 On the ferry

Baby girl looked pretty cool in her Chuck Taylor's today. It was also the first day she was willing to bear weight on her legs. I don't know if the two are related, but it was shocking nonetheless!

Jen came by for dinner, which was lovely. We see each other virtually everyday, but because she was away for a week, and then I was away for a week, it feels like we haven't seen each other in ages. She brought me back my notebook that I bought just before the baby was born so I could record any poignant moments in it. I wrote Eleanor's birth story, and then didn't write again for six weeks, and then one more time to record all her symptoms the day we went into hospital. I gave it to Jen to keep track of all our meetings during those first chaotic weeks, and then promptly forgot about it. She returned it to me tonight, and it is so weird to see everything in writing. It has become a living, breathing document of her life and her condition, but not intentionally. I suppose this blog is as well, but there is something about the written word; it shows so much emotion and tension. Just the way the words are scrawled across the page gives you a glimpse into how Jen or I was feeling in that moment. There are words capitalized and emphatically surrounded by asterisks, like  the phrase, "IT IS SURMOUNTABLE", and you can feel the joy when small victories are achieved: "Bone scan negative!" It's such a cool thing to have all of it in one book that also shares her birth story. I can't bring myself to read that just yet. It took me months to get over it, and to stop marvelling, "That happened. That really happened!" and I don't want to start that all over again.

I think my favourite part of it (and the reason I bought it) is the quote on the front cover:

She's turning her life into something sacred: Each breath is a new birth. Each moment, a new chance. She bows her head, gathers her dreams from a pure, deep stream and stretches her arms towards the sky.

Pretty, no? Or maybe it's just a literary interpretation of me doodling hearts and unicorns jumping over the moon in my proverbial notebook of life. Yup. I'm feeling that good.

Home

Home is sweet.

We came home on Tuesday evening, and it has been pretty awesome. Kris had the house all set up and ready for us which relieved so much stress. It makes such a difference to come home to a lived house rather than an empty one. Eleanor is visibly happy with the situation. She's so great.

But what would a trip home be without a few unscheduled visits to the hospital?!?

Last trip home was fraught with hiccups (broken feeding pumps, broken feeding pump bags) and so far we have been lucky. Four full days without an incident! Woo hoo! Until today, when she sneezed (I kid you not) out her NG tube. Oh, Eleanor. You silly little bear. We phoned the pediatrician-on-call before heading into emerg, and thank God we did. She arranged for us to go up to the pediatric ward and have the nurses there help us, rather than sit in the emergency waiting room all evening. The nurses were sweet, but were not very familiar with the procedure on an infant, and it was all a bit tense. We didn't bring any of the band aids we normally use to stick the tube to her cheek, and the ones the nurses provided didn't work very well, so they put layer after layer of tegaderm (clear tape) in an effort to get this stupid thing to stay put. She looks pretty silly, but it's in the right place and staying put and that is all that matters.

One thing that is a little unsettling about our pretty awesome home visit is Eleanor's inability to go to sleep in the evenings. The first couple of nights were okay; she took a little while to settle and needed lots of time to hug my arm, but would eventually go to sleep. The last two nights, however, have been maddening. She shows all the sleepy signs (yawning, eye-rubbing, general fussiness) but the second she gets placed in her crib, she is wide awake. I bent over her and allowed her to hold my arm for 45 minutes and I don't even think she blinked once. It makes me incredibly frustrated, so I passed over bed duty to Kris. He's very patient and sits in her room and stares at her til she sleeps. It takes awhile, but at least he doesn't get as mad as I do. Patience is a virtue I do not have. She just fell asleep, and he came in here to express his concern with her. We both agreed that it is probably the high dose of steroid that is causing her to fight sleep. The doctors keep her on the stress dose as it would be harder on her system to wean her down and up again for each round of chemo. Kris looked so small and frail in the doorway. My heart broke (and is breaking again as I type this) when he said, with sloping shoulders and heavy heart, "I feel so bad for her". Even when she isn't getting chemo she still has side-effects from other meds to contend with, and still has to get tubes shoved down her nose and it can't feel very good. She is super-human in so many ways, but she is still only 10 months old. I feel bad for her, too.

But that said, our visit has been great. She is active and happy and never cries during the day and naps well and is in loooooooooove with her dog. They have become fast friends when Atia realized that Eleanor was like a human lollipop with changing flavours. Mmmm coconut yogurt in the morning and sweet potato and chicken in the evening! Who could ask for anything more?

Early mornings with my girls

I Want Security

Eleanor has a new security blanket. It's my forearm. No other part of my arm will do. No one else's arm will do. She will not sleep without it.

I'm fortunate in the fact that her hospital crib puts her at waist level, so I am not forced to fold my body in half whilst allowing her to snuggle with said arm. It's still not that comfortable. I usually end up leaning over her for a good 15 minutes while she slowly nods off. She likes to absentmindedly stroke my arm with her right hand while pulling it closer with her left. She smacks her lips and rubs her tongue over her gums (and lone tooth*) the whole time. I know she is asleep when the smacking stops. It is only then that I can begin my escape, and I ultimately go too quickly and she wakes up. We usually end up repeating the whole process two or three times.

I suspect it is a behaviour that has developed from the fact her nursing came to an abrupt stop. She probably still craves some skin-to-skin contact and has come up with this as an acceptable substitute. I have to say that I am also finding weird ways to be close (see previous post re: lying in her crib). I miss having that cuddle time too, but this arm-fetish is bizarre. I know when she is tired because she will contort herself in my arms to find my skin, and then her little hands just stroke away. It's almost like she is trying to put me to sleep - There, there, Mummy. Shhhh...

I sometimes feel like my heart is going to burst I love her so much.

*Great shot of her lone tooth

My little jack o' lantern

Mantra

I don't know how to pray. I've been trying for months and I am not very good at it. I try and think my prayers through in my head, but ultimately become distracted. I have tried mumbling them to chest to no avail. I have tried going through them while walking, but I end up coming up with blog posts or Facebook statuses instead. You know it's bad when you start praying in Facebook statuses...

I have this belief that prayer shouldn't come from just spoken words, that it should be an all-encompassing cataclysmic event. Your whole body should vibrate with your requests and hopes and dreams and shoot them out into the universe. Yoga and running long distances can often drum up that sort of response with me, but it doesn't happen very often.

On my run yesterday I tried to think my way through my prayers. As usual, I was falling short and getting distracted. I wasn't going very far or very fast so my body wasn't helping the situation. I decided the best way to get my point across was by simplifying the whole process. Rather than thinking out long, drawn out thoughts, I boiled it down to one word: remission. I chugged my way up Queen Elizabeth Park, each syllable punctuated with every step: ree-mish-shun. All the way over to Shaugnessy, I kept it in my head: ree-mish-shun, ree-mish-shun. By the time I came down Angus and back towards the hospital, I was flying faster and faster: REE-mish-shun, REE-mish-shun, REE-mish-shun. My hip flexors were aching and my lungs were burning. I am very out of shape, but the dream of that one word was enough to keep my feet moving and my legs churning. It drives everything I do. I want it so badly for her.

She's turning out to be such a lovely child - so long as Kris or I (preferably both) are in her sight line. She's chatting away and playing games and full of chuckles. She definitely still has a hearty, masculine laugh from all the testosterone she was exposed to - no girly tee-hees around here! It's really fun to see her grow. I have taken to climbing into her crib with her and snuggling. I close the blinds so the nurses won't think I am nuts... though it's probably too late for that... But it's hard to get our cuddle time in, especially now that she has stopped nursing, and she has been hooked up to a mega-IV pole for the past two weeks and is virtually bedridden as a result and I miss my baby. So I climb into her bed. As I was laying next to her last night, I couldn't get over how old she looks. Her eyes are those of a toddler. It's crazy how much they change. She's still very much a baby, but I can see what she is going to look like in a year's time. She's growing up.

We are waiting for her blood counts to come back up before a short home-visit and then on to the next round. She's taking a little bit longer this round, so we are just taking everything day by day. It's been a very good week.