TEA

We here on Clermont Avenue are still awash in royal wedding fever, and kept with the theme for tea (that's dinner to you yankees).

BONNET

In honor of all the nuptial brouhaha today, and because it was sunny, Lula donned her best spring hat.

SPAAAHHH CASTLE

Sam and I took out very first full day off together today. 

I remember my mom telling me years ago about the first time she and my dad went out together after I was born and I was 6 months old and they went to see a play but my mom kept running out to the lobby to call the sitter and I remember thinking "oh my god what lunatics - 6 months?? How could they not have gone out sooner?? What uptight first time parents, blah blah, etc etc". Yet somehow the past 10 and 1/2 months literally slipped through our fingers and even my masterful planning skills were not able to find a single day that we two could be away sans kids for more than 3 hours. 

Today, however, we spent 7 blissful hours at Spa Castle which is like a Korean Disneyland for adults. 5 floors of saunas, hot tubs, outdoor pools, steam rooms, masseuses, beauty treatments, nap rooms, big bowls of korean stew, and bubble tea. It's like being cocooned in warm air and water for the day and emerging scoured, scrubbed, soothed, and amazingly relaxed.  Since it's unlikely that we will be going on any vacations anytime soon knowing that it only takes an occasional trip to northern Queens to be reborn is inspiring.

We are already plotting our next trip there.

PT WITH PAUL

Here's a little sample of one of Lula's therapy sessions with her PT Paul.  He is amazing with her and I really think the therapy has made a difference with her.  Notice that he never ever stops talking to her. I used to think that was a little kooky but I think it's actually a deliberate technique of giving her constant feedback.

http://www.youtube.com/watch?v=ccg2h05uc_I

CHOO CHOO

I can't remember where we got this fantastic 70's style romper but I lurves it and so does Lula.

TUNNEL VISION

CLEVER

It was an absolutely stunning day here in Brooklyn.  Cecelia and I tried to keep the kids outside as much as possible, which seemed remarkably easy to do since we didn't have to spend any time safeguarding the kids from the elements. 


We took the kids to the park and on the way back Cecelia gave Roan her water bottle to play with and he did this:

 

Roan started assuming this loungy stance with his ankles crossed when he was only a few months old. This is the first time we noticed:

ADDENDUM

I don't know how this one previously escaped me but I just found another of Sam's wackadoo outfits for Lula.  I added it to the original post as well.  Enjoy.

Vivien Westwood meets Eddie Munster

SWINGING

Roan in the new swing that Cecelia and Jason picked up for the kids in Costa Rica and Lula doing PT with her therapist Paul in the back yard.

A WEE BIT JEALOUS

BATHROOM BONGOS

DONK

For this shiner right here, Roan can thank his Grandma Susan, who forgot to strap him into the stroller.

My mom's parenting style is classic 1970's in nature, a method my landlady describes as "benign neglect".  She sneaks off during naptime to smoke cigarettes. She rolls her eyes at my repeated requests not to give Roan cranberry juice cocktail or put him to bed with a bottle, things that any self respecting 1970's parent didn't think twice about. I am vetoing my own childhood! Given that none of us wore seat belts until about 1982 or had much in the way of childproofing it's a wonder that any of us are alive, but here we are.

 On the other hand, she is usually the one to first recognize when Roan is ready to try something new like finger food or a bigger bathtub. And he's an intrepid and nimble kid so the two of them make a dynamic pair.

We may just need to buy Roan a helmet.

WORK ETHIC

Yesterday was my last day at work, which I say with trepidation. I've been freelancing at Cosmo part time for a few months now, and I am not exaggerating when I say that I owe any sanity I have had to the respite of work.

Originally I honestly couldn't see how my brain, awash in feeding schedules and doctors appointments, would function when asked to work with other adults.  That is, until my first day back when I was able to get up from my desk, walk to the bathroom, and pee without first making sure no one would cry/fall/puke/choke in my absence. How liberating!

I now think of the perennial question, "How do you balance work and family?" as contrary to it's own point. The real question, I think, should be to stay-at-home parents, "How do you maintain your sanity without work and family to balance each other out"?

Nothing that occurs in an average day at home with the kids is particularly difficult, but the endless, relentless, sameness to every day and night for weeks and months on end is a serious test of endurance. A marathon is hard, but it's over in a couple of hours if you're fast. Parenting is akin to a walkathon around a track inside a public school gymnasium that lasts for 10 months straight. I am amazed at how everything is simultaneously mundane and crucial nearly all the time.


To wit, here is a sample of what one days schedule is like around here:

7:00am Roan wakes up
7:30am Lula meds
7:30am Lula Nebulizer treatment
8:00am Roan breakfast
8:00am Lula G-tube feeding/feeding therapy
9:00am Night nurse leaves
10:30am Lula meds
10:30am Roan bottle/nap
11:00am Lula 1 hr with speech/feeding therapist
11:00am Lula G-tube feeding
12:00pm Roan lunch
2:00pm Lula G-tube feeding/feeding therapy
3:00pm Walk to the park, errands, etc
4:00pm Lula 1hr with physical therapist
4:30pm Lula meds
5:00pm Lula G-tube feeding/feeding therapy
5:00pm Dinner for Roan
6:00pm Baths
7:00pm Roan to bed
7:30pm Nebulizer treatment for Lula
8:00pm Lula G-tube feeding
10:30pm Lula meds
11:00pm Night nurse arrives
11:00pm Lula G-tube feeding
1:30am Lula meds
2:00am Lula G-tube feeding
5:00am Lula G-tube feeding

I should note that I was working at Cosmo part time and my bosses and colleagues were uncommonly supportive of my other life. My boss has twins and could wholeheartedly empathize with me.  

But even the most insane of photo shoot production catastrophies have hardly prepared me for the schedule of parenting these two puppies.  If I want another vacation I think I will just have to find another job.

FASHION VICTIM

For a guy who has worn pretty much the same uniform since I met him in 1997 (mildly ironic or graphic band t-shirt, zip up hoodie, slouchy jeans, clumpy trainers) Sam is pretty eclectic when it comes to dressing Lula. He sends these photos to me, tauntingly, at work. I suppose he probably didn't get to dress up dolls as a kid, and we won't have too long to put them in whatever getup he chooses without protests from the kids so he might as well enjoy it while he can.

Vivien Westwood meets Eddie Munster

That "Ms." t-shirt was mine. SO seventies, no?

Note the cable ties on her ankles to keep her booties on

The little CBGBs top is from when my sister worked there before it closed

Punk Rock Princess. Her hairstyle reminded me of someone...

...oh yes

HOPEFUL

This is Gracie's favorite new spot in the house. So far stray dinner droppings are the only perk that Gracie can see to having the kids around.

CHIN UP

Lula has gotten so much better at holding her head up she's now doing it in her sleep.

BOOKENDS

This video is from when Roan and Lula were about a month old.  I can't get over how much they look alike!

I BELIEVE THIS IS WHAT THEY MEAN BY "DOE EYED"

Eat your heart out, Bambi

A FRIEND IN DEED

I have always been incredibly lucky with friends. I mean really, really lucky.  And since birthing twins has put me under a de facto house arrest, I have been pretty much dependent on them coming to me.

We have had the most remarkable trail of friends and family come to the house to see the babies and feed us, like an endless parade of the Three Wise Men bearing gifts of baked goods, ice cream, and entire three course meals. I blame the baby weight on the steady supply of carbs being brought my house rather than the actual babies.

There have been a couple of people, however, who have literally had to scrape my brain up off the floor and pour it back into my skull, and then feed me coffee and Oreos, and they are Cecelia and Aggie.  They have hung out in multiple hospital rooms, learned how to flush a G-tube, laughed at my ridiculous breast pumping bra, and listened to the endless minutae of my life with limitless patience.  I never go more than a week without at least one of them coming to visit.

Truer friends I could never have asked for. Truly.

Cecelia and Lula doing physical therapy

Aggie doing some weight lifting

A WALK IN THE PARK

Yesterdays thunder and lightning storms gave way to a fantastically brisk spring day today.  The 4 of us went for a walk in the park and it was glorious.  Lula still freaks out over any gust of wind but I've figured out that I can calm her down by keeping a scarf wrapped around her and using it to shield the wind.

SPEED CRAWLING

ZEN FEEDING THERAPY

Lula's new custom feeding tray, designed and made by Dad

TUMMY TIME

Lula suddenly likes sleeping on her tummy

BELLEVUE

Lula went for a follow up with orthopedics yesterday. A scan in January indicated the possibility of hip displaysia, so we kept her little legs in froggy position as much as possible and the new scan came back A-Ok. The orthopedist was very happy with how much she has chunked up and said that her thigh muscles look strong, which are the most important ones for walking. She may need to wear a little boot on her left foot when she starts trying to walk, but overall it was good news. Almost.

Except there was one sentence in 3 hours of being there that has superseded everything else. Betty Keating, her primary care nurse practitioner said, as we discussed her progress, "well you know, you don't need an MRI to see that her brain isn't developing as it should be."

Crushed.

Betty is amazing and the toughest broad on the block and she doesn't mince her words, but I don't do well with open ended statements like that. Sam has repeatedly mocked me for saying things like "I don't want problems, I want solutions!" If you're not giving me good news you'd better follow up your bad news with a plan of action because my brain doesn't tolerate open ended catastrophe (whose does though?)

But that was it. "You don't need an MRI to see that her brain isn't developing as it should". I am nothing if not a pragmatist, and I have held the blanket insistence of others that "she's going to be fine!" at arms length, knowing that these declarations aren't made because they are experts or soothsayers but because they generally want to end the conversation about my sick baby. But I don't know what to do with a statement like that. Moments like that make fussing over her infinitesimal progress (she can sleep on her tummy now! She likes being carried in the Baby Bjorn! She maintains eye contact for 3 or more seconds!) seem delusional and trite.

Afterwards Sam and I went to see Macbeth at BAM- his birthday present which we had to start orchestrating in February. I kept watching the performers and wondering, "were any of these people born with hypotonia? Did any of them not smile or have weak vocal chords?" Could Lady Macbeth have been so plotting and manic if she had been born with neurological issues? Maybe that's why she was so nuts!

I look at people constantly on the subway, or coming and going at the cafeteria at work. I watch for a sign that they were once like Lula. I never see those kids, the ones in the waiting room with us at Bellevue, listless limbs and empty eyes, drooling in elaborate wheelchairs- I never ever see them in the cafeteria. I don't see them playing Lady Macbeth at BAM. Is Lula going to be as invisible as all of them?

READ THIS

I got an amazing response to my post about C-sections from my facebook friend Lili who wrote this account of her own experience with her twins.

http://www.huffingtonpost.com/lili-zarghami/mothers-day-pbss-this-emo_b_567676.html

IN OTHER NEWS...

I felt like my last post was too negative a note to end on for the day. So here's a little sunshine, circa last summer.

WEDNESDAY MORNING GRIPEFEST

Perhaps day 2 of gloomy fogginess already had me in a funk, but I just lost it on the woman at our medical supply company, who has yet again sent us the wrong thing.

We have a fairly endless need for medical supplies and I am repeatedly amazed at how many orders are flubbed, how often we get the wrong type, size, style, etc of whatever it is we need. I have had consistently better service with diapers.com. If only they delivered feeding bags! Seriously, anyone reading this work there?

Last week we were supposed to get a small portable oxygen tank. This is only in the case of a dire emergency, where we could give Lula oxygen while on the way to the ER. Instead we got 4 huge tanks with a wheeling stand. Really? I can just imagine the scene - Sam wrestling with a 4 ft tall oxygen tank that's tethered to Lula while we try to race to the hospital!

We also seem to get everything in quantities of 200, even if we only need, say, 5. I have enough suction catheters to clean out the airways of everyone in Fort Greene through the next cold season.

It's bad enough that my poor kid is sick and endlessly having to be suctioned, poked, prodded etc, and that our living room, despite our best efforts looks like an ER. It really, really sucks that she has a plastic tube in her tummy to eat. And worst of all that none of this looks like it's going away anytime soon. But to be treated like you are just another schmuck in line at the DMV when you are trying to manage all of the equipment that is keeping your baby alive is just another indignant reminder of how unfair life is sometimes, in the smallest of ways.

YAAAWNN

I just found this video from July when the babies were only a couple of weeks old. Good God he looks like a wee naked turtle.

SPRING SWING

Finally, finally, a whiff of spring here in NYC.  We took the kids out to the back yard to enjoy it asap. Lula took it all in stride...

BOYS WILL BE BOYS

Sam has had a fairly eventful few days.  First, he had the brilliant idea of asking our upstairs neighbor Claire, who is 8 years old, if she would be willing to cut his hair. Would she ever!! When she was finished she declared it a triumph and left Sam looking very much like a Bird of Paradise doing the ritual mating dance that we just saw on a David Attenborough special.

Witness:

Bird of Paradise

Oh my, what was I thinking?

I tried to do a little damage control but some of it is unsalvageable. Luckily, Sam is like a Chia Pet. His hair will be down to his shoulders by next week.

Then on Sunday after delivering a job in Chinatown Sam managed to get the car towed. Third times a charm! Turned out they towed it to the Brooklyn Navy Yards which was pretty convenient (considering how inconvenient it was to be towed in the first place). Sam thought Roan might like a manly municipal garage expedition so he took him along. I was secretly hoping that my little blue-eyed boy could sweet talk us out of paying to get the car out of the pokey.  No such luck.

If fact, it also turned out that our inspection had expired so we got a ticket for that too!  Which led to another male bonding experience of Roan and Sam going to get the car inspected. 

Fun times on Fulton Street!

Up next, Roan learns how to change a flat tire!

IT TAKES A VILLAGE

I knew we would need lots of help with twins, but I never really pictured myself having a staff. I have always been a serious DIY kind of girl, indignant at any photographer who expected me to run personal errands for them or fetch them coffee.  Get your own damn soy latte!  I took for granted my ability to clean my own house, buy my own groceries, do my own laundry, pay my own bills, walk my own dog, etc.

Now, however, unless I can do something at night (while pumping - one errand I can definitely not farm out) on the computer - thank you FreshDirect, Diapers.com, etc - I find I have slowly outsourced my responsibilities to others.  Which is a good thing, because as it is we are hanging on by a thread around here.  I, who used to spend 4 hours in a Joan Crawford style frenzy cleaning the bathroom because I found it oddly relaxing, now simply cannot be arsed.

I tallied up the cast of characters we have coming and going around here and I really should start selling tickets cuz it's a circus.  By my account we have 12 people total coming and going every week.  2 Night nurses - Mistura and Perpetue, 3 therapists for Lula - Paul for PT, Loreto for OT, and Lisa for feeding, 4 sitters - Kia, Sacha, Cecelia and Jemma, our cleaning lady Ana (who Roan is utterly besotted with), and our dog walker Sharon. And then of course there is my mom. 

As insane as it is to manage the scheduling of everyone, aren't we a lucky lot to have such major reinforcements? How on earth does anyone raise kids without an army of crafty, caring, industrious people as support?

PERSONAL ASSISTANT

We had no problem snatching the pacifier away from Roan a month or so ago when we saw his interest in it waning, but Lula is another story. The girl has had it rough.

So when one of her feeding therapists said we should wean her off of it (not good for speech, development, feeding, etc) we kind of ignored her, guiltily. Then we found out from one of her many doctors that studies have shown that sucking on a pacifier actually helps with dismotility (the reason for her G-tube). So the pacifier stays, for now.

Except it doesn't always stay put.

 So sometimes she gets a little help from her big hearted PA.

A WORD ON C-SECTIONS

I have seen two things online recently about the experiences of having twins via C-section and it has given me the urge to add my two cents to the universe of opinion and judgement on this heavily opined and judged subject.

First, here they are:

http://www.nytimes.com/2011/04/03/magazine/mag-03lives-t.html

and

http://www.pistolsandpopcorn.com/

(the post from March 3 called "What it's like to have a C section")

First of all let me tell you that birthing classes - at least extensive weeks long classes like the one we took - are a waste of time because they tell you all about the perfect pregnancy and delivery. They spent maybe an hour of a 16+ hour course on C-sections and mostly discussed how to avoid one. I knew I had a 50/50 chance of getting one so I was rather more interested in the deets but they were not forthcoming.

We watched one video in class of a woman taking a hike up the side of a stream and then eating rice and beans with her fetching sculptor husband while in labor.  She gave birth in her hottub and then her whole family climbed in with her!  I knew that wasn't going to be me with twins, but honestly? How is seeing perfection supposed to prepare us for anything less?

I now laugh at myself and how much I agonized over what was to be my "birth experience".  Would I have a tub in my room?  Should I have an exercise ball to bounce on during labor?  Would I be allowed to drink water? I was in labor for two days and still had an emergency C-section and I don't regret any of it.

That's because about 30 seconds after the delivery, while I was still filleted like a salmon and staring at the white glare of the ceiling and my first baby let out a scream, and then my second baby let out nothing and was rushed off to the NICU I realized how utterly insignificant my personal "birth experience" was.

Nobody, midwives or birth class teachers, prepares you for bad news.  They never EVER discussed what would happen if your baby had a deformity, syndrome, disease, seizure, or anything else that sends you down the rabbit hole to the NICU.  There you are with all of the other terrified and bewildered parents of the other invisible "birth experiences", trying to figure out "gee, how do I put 'something neurological' on the birth announcement"? I saw my daughter with IVs and tubes and monitors stuck everywhere and realized that everything that was artificial and unnatural was keeping her alive.

I think natural birth is wonderful and is in many cases the safest and best way. But it is a luxury. It's a luxury of health, a luxury of ideals and best possible outcomes.

Ultimately, your birth experience will last a couple of days at most.  Your parenting experience will last the rest of your life and will most definitely not be what you plan for, even if you don't encounter the medical nightmares we have been through.

So if you have a less than ideal birth experience but you have a healthy mom and baby thank your lucky stars and move on.

SUNCATCHER

Roan discovered sunbeams this morning and was trying to grab one

BREATHE EASY

Just had an appointment with Lula's Pulmonologist (lung doctor) Dr. Fiorino, who was amazed at how well she is doing considering how sick she was 2 weeks ago.

She felt the same as we do, which is that while the pneumonia was a horrible and terrifying experience, the upside is that we now know what signs to look for and how better to handle it. She said to keep up our chest PT, nebulizer, suctioning trifecta because it seems to be working, and that we can resume feeding therapy.

All in all lots of good news.

GOTS MA HAIR DID

I bought some barrettes for Lula (about 50 for $1 on Fulton Mall). I despise those cheesy beflowered infant headbands that desperately mark any bald baby as a girl, but Lula is really growing a head of hair and it's almost in her eyes. 

Anyhow I awoke this morning to find that our wonderful night nurse Mistura had had a little fun in the hair decorating department.

WEEEEEEEE!!

SPA TREATMENT

Here's Lula getting her atrovent nebulizer, which basically helps to clear up the gunk in her lungs. We also like to think that the vapors do wonders for her skin.

A GOOD DAY

Today was a good day. I got to sleep in (until 9am woo hoo!) We had a new night nurse last night named Perpetue (!) who seems to be both competent at her job and really sweet and good with Lula.

Lula had occupational therapy with Loreto, who is awesome. Our sitter Kia, who we love and is effortlessly good at everything with the kids, got Roan to take a 2 hour nap. Lula gnawed on a carrot and had a bit of sweet potato (not back to full on feeding therapy until she is 100% well). I did a bunch of chest PT on her and used the suction machine to Hoover a bunch of gunk out of her nose, which is both gross and extremely satisfying.

I put Roan in a ridiculous getup of 1970s overall bloomers and stripey shirt. I tried wearing Lula in the me tai carrier and she totally dug it which is great since the girl tends to hate all forms of transport except for my arms. We all went for a walk in which Lula only mildly freaked out every time there was a gust of wind.

Sam managed to get some work done in the studio and when he came back we skyped with Sam's mom and sister and then skyped with my sister. Sam stayed with Lula for another tube feeding and Roan and I went to the park and swung on the swings and slid down the slide. Lula crashed and has been sleeping for hours and Roan has just fallen asleep and its only 7:15.

All in all everything went perfectly, the schedule was kept, the medicines were administered, the breast milk was pumped, the poops were changed, there were absolutely no meltdowns, panics, major vomits, minor fevers, or anything else.

And yet even on this easiest of days I only managed to leave the house for about an hour in total, and I just realized that I never brushed my teeth.

CROOKLYN

Roan at the park across the street from our apartment, slightly overdressed.

BATHTIME WITH ROAN AND CHARLIE

We had a visitor yesterday. Little Charlie Hutchison, who was due on the same day as R + L and is 3 days younger. We didn't start off great. Roan was a rather rude host who burst into tears whenever Charlie let out a squak, but things improved as the evening went on and we ended up here:

http://www.youtube.com/watch?v=NB9KJjgZJdQ

FILM FORUM

My usual taste in movies runs to the serious and depressing, but when I am down to my very last nerve of sanity after a full day of twins, or a full week in the ICU with a pneumonic baby, I need something light and escapist.

However, I hate, hate, hate crappy movies, so I have compiled a list of movies that are perfect for forgetting that, say, your daughter has a mysterious genetic syndrome if only for 90 minutes or so, without rotting your brain.

Keep these in mind for your next personal crisis:

The Odd Couple  - I actually watched this in the ICU at Cornell and it is perfect, literally the perfect comedy
Kung Fu Hustle - Crouching Tiger meets Wyle E. Coyote
Withnail and I - Very, very British cult classic with a hilariously drunk Richard E. Grant
Little Miss Sunshine - Alan Arkin as a hysterically inappropriate Grandpa 
Sleeper - Woody Allen's absurd futuristic comedy where he runs around with a giant stalk of celery
SOB - Blake Edwards orgy filled ode to 1980's Hollywood excesses
The Big Lebowski - Coen brothers, bowling, and The Dude
Dirth Rotten Scoundrels - Plot is a bit cheesy but it's worth seeing just for Ruprecht
Joan Rivers: A Piece of Work - She is really something
The Producers (not the musical) - Zero Mostel and his little old ladies
Best in Show - Dog shows are so far removed from my real life (our dog is lucky if she gets a walk)

Movies to Avoid

Terms of Endearment
Lorenzo's Oil
The Sweet Hereafter
Anything where anyone gets sick or dies