Monday, April 30, 2007

Back from chi-town

Well, what a wild ride! No need to dwell too much on the actual travel as there is so much other stuff to report. BUT, our departing flight was delayed by 1 1/2 hours. The twins were very busy (!) in the airport but much more calm on the plane. O'Hare was a nightmare of construction but we did eventually find the car rental shuttle while lugging around babies and all. They upgraded us to a minivan (gulp!) and then we arrived late to the hotel and our appt with the developmental specialist. As it turned out, she was late or misinformed and didn't show up until we were supposed to leave for a reception. Whew! The room's large glass window had a leak, the carpeting was wet and the room was small with no space for two port-a-cribs that apparently the hotel no longer had available. To make a long story short, the accommodations were much improved by the next day.

A wonderful woman named Libby arrived at 6pm to administer some developmental tests to the twins. As Evan ran around the halls of the hotel with one of them, I held the other on my lap while she demonstrated and coaxed them gently to imitate and respond. Creed was an excellent 'show monkey'. He pulled out all of the stops with behaviors I had never seen before. He sat quietly and listened intently to Libby, performing all of the appropriate tricks. Results: he is developmentally in sync with his corrected age of 16 months + some...Good job boy,boy!

As for la petite Z, she was at an obvious disadvantage as she cannot see the toys and imitate. The tests are standardized and not geared to the visually impaired. But from Libby could observe, Z's little brain is processing all shapes and objects through touch and she possesses good 'problem solving' skills. Hurray!

So at 7pm, off we ran to the champagne reception for the Intuit Show at the Artopolis (the ART Chicago Fair at the Merchandise Mart.) We totally pulled a Brittney Spears and jumped into a cab, holding the twins on our laps and arrived just in time to see some wonderful outsider and folk art exhibited by galleries from all over the country.

FRIDAY: We had to be at the University of Chicago by 7am for the toxoplasmosis study. It was an easy 20 minute trip by mini-van and I must mention that Zelda loves that car! As Evan said, we could buy 3 mini-vans for the price of our Land Rover! The minute she is in her car seat she starts giggling, babbling and swinging her little legs.

We arrived and were met by Mari, the study coordinator, who up until now has been a voice on the phone. We sat at breakfast with other families who have kids with toxo of varying degrees and speculated severity. We were seen by the Drs Noble (opthamology), Heydeman (neurology)and Boyer (infectious disease). They examined each of the twins and asked us tons of questions. Blood was drawn, babies were weighed and eyes were photographed. And of course, we were reunited with the Oracle. Dr McLeod, with all of her kindness and wisdom, marveled at the growth and progress of our babies. We anxiously await the arrival of their written reports summarizing our visit and their exam results. It was a long day and after the other families had left, we sat on the floor of the hallway and chatted with the doctors as the twins roamed and explored. They asked "Are these the same babies as last year?". They wowed everyone...

So, the consensus seems to be that Zelda has some sight! As Dr Noble put it: even with a pinhole opening in her eye, she may be able to perceive some light and/or shape. With the appropriate prescription, she may be able to refine whatever information that she is receiving. All the more reason to get her quickly to California to see Dr Tawansy for surgery and an examination under anesthesia...
As for Creed, due to the scar on his right macula, he will need to start wearing glasses. Although he seems to be using both eyes, it is felt that he is perhaps using his right eye for peripheral vision and his left eye for direct focus. Again, get thee to California!

It was a good day, contacts were made, information was obtained and then - we had babysitters...Yes, Margo and her husband Luke brought their 3 girls to the hotel and we went out to dinner! The girls were wonderful, so sweet and kind with the twins. Creed was in heaven:) Zelda was exhausted! The adults went to Follia, a hip Italian restaurant in the meatpacking district. Wonderful food, fine wine and robust conversation. Back at our hotel suite, we returned to find the twins asleep as were we as soon as our heads hit the pillows.

SATURDAY: Up at 7am in a much improved room change - a beautiful suite with a view of the river at the intersection of Michigan Avenue. We visited Millennium Park and took in the work of Gearhy and Kapoor. We drove out to Glencoe to visit Bill & Kathryn - Evan's friends from college. We like driving along Lakeshore Drive out to the 'burbs passing by those beautiful houses. Creed & Zelda got to jump on their first trampoline - woo-hoo! Then, once back in the city, we hit the Contemporary Art Fair. The kids enjoyed it about as much as we did. It's strange, the art world that is. I want to see amazing paintings by people that can handle paint - gimmicks don't do it for me. I am not impressed by 6' x 6' photos of whatever these artists deem interesting yet banal enough to seem desirable at $25,000! Yawn. Everyone was trying sooooo hard to be "different". I want soul, I want technique, I want beauty - traditional or otherwise...
Dinner was fairly close to a disaster. We tried a restaurant in the hotel and ended up taking food back to the room. Again, all involved were exhausted.

SUNDAY: Up early, back to Millennium Park to take in the Crown Fountain - such a great place for kids. We stripped the babies down to their diapers and let them go! They raced into the water and up to the raining stream falling from the giant walls of glass bricks. The changing photos on the walls displayed faces of the people of Chicago. The weather was perfect and we were ready to go home.

Off to the airport with time to spare, we broke our loyal double stroller and had to leave it at the gate. It couldn't be folded down to load onto the plane, but much to our surprise, it somehow made the trip from Chicago to Austin and was waiting for us at disembarkment. All in all a great weekend. Stay tuned.

Wednesday, April 25, 2007


Lately he has been practicing saying "Zelda".

We're off to see the Oracle...

So, tomorrow we head to Chicago.

The twins are enrolled in a study at the University of Chicago that follows babies born with congenital toxoplasmosis. It is conducted by Dr Rima McLeod and her team of doctors. We love Dr McLeod. We call her "The Oracle" and "The Toxo Guru" among other names. She is amazing. If we can thank the Tiki Gods for saving the brains of the twins, we can thank Dr McLeod for saving their lives.

In the fall of 2005 when the twins were born at St David's Hospital here in Austin and then transferred to Texas Children's Hospital in Houston, Dr Ralph Feigin at TCH put us in touch with Dr McLeod and her study. Upon our initial attempt to contact her, she responded immediately. The doctors at TCH were overwhelmed by the extreme prematurity of the twins as well the obvious surprise of the toxo infection. Dr Mcleod quickly came to our rescue by first answering our questions and then weighing in on their care. She was the one that suggested the VP shunt for Zelda and managed to convince the Tiki Gods to perform the surgery. She was the one who insisted on charting their drug regimens according to their weight gain. She was the one who followed their blood counts when white blood cells or clotting issues were apparent. Dr McLeod found us the connection with Dr Tawansy in California when all of the eye doctors at TCH wouldn't touch Zelda for surgery.

Last year we flew to Chicago to enroll the babies in the study. They were infants, newly released from the NICU. They had shaved heads from surgeries, squirmed and shrieked when blood was drawn and their eyes were examined. This year they will see the same team of experts: infectious disease specialists, eye doctors, neurologists, developmental therapists; they will have blood drawn, have retinal exams, have their hearing tested. I am so excited for the doctors to see their progress. They have hair! they have grown! they walk and dance! they babble and laugh! they eat cheerios, fish and bananas!

I remember one of the first things that Dr Mcleod told me in her quiet voice over the phone at the NICU bedside upon positive confirmation that our twins had this devastating infection. She said "We have seen kids with proper treatment grow up and lead normal lives and go to college." And we're not going to let go of that dream - that is unless THEY decide that they don't want to go:) Then they can just travel through Europe instead.

Monday, April 23, 2007

I need a Sherpa!

Okay, so last summer we flew at least 4 times with the twins - they were sleepy little ones that we held on our laps. We checked all of our luggage and simply rolled the double stroller right up to the gate. When we landed, it was waiting for us as soon as we disembarked. We would rent a car at our destination as well as the car seats so as not to have to haul stuff onto the plane and through the airport. On the plane, we weren't allowed to sit next to each other holding twins because of the oxygen mask rule so we sat across the aisle from each other and handed the babies back and forth. Many a kind traveler offered assistance because with twins, someone always has their hands full. With one baby you can take turns, with twins it's "Wanna switch?".

BUT, this Thursday we are off to Chicago. We are taking 2 toddlers (who walk and climb and don't like to be stationary for too long), 2 car seats (so the twins can be safely strapped into their own seats on the plane and in the rental car), a double stroller (to whisk them through the airport and to use on the streets of Chicago) and assorted luggage including 2 fold up booster seats (so we can safely feed our little angels in the hotel suite). Going out for meals is an option but it is a difficult one. We have enough trouble with it at their age and here in Austin, we happen to know all of the restaurant owners so apologies are readily accepted. They are getting better at it however, because we insist on eating out at least once a week.

Anyway, I know we are not the first family to travel with twin toddlers plus other kids and I appreciate the road that has been paved for us by other brave families. But I really want a Sherpa! I want someone to help Evan negotiate those cumbersome car seats through security and help him strap them into the seats on the plane while I sing and dance and entertain the kiddos as we wait for boarding and delays. I want a Sherpa to take our luggage to the check-in desk and fetch it from the baggage claim and ride with it on the shuttle bus to the car rental place. I want a Sherpa to help us navigate the double stroller through the airport to the gate as well as when they have to carry it around the security checkpoints because it's too wide to roll through the metal detector.

Okay, so I know that I am whining but I am also trying to mentally and physically prepare myself for the schlep - I mean that so wrong?

Friday, April 20, 2007

La Baguette Quartette

Finally! I am so excited...our family can be the "Baguette Quartette". Having lived in France for years, I still tend to buy a baguette when I go the market. On a weekly basis here in Texas, I have seen many a baguette get too hard and crispy to eat after the first day or so. Years ago I even cracked a tooth when eating a tartine with butter and cheese for a snack. Unless there was a concerted effort made with Evan to eat the entire thing, it would often harden before we could finish. It became a point of contention. Evan, who hates to waste food, would berate me for not buying a soft italian loaf that could be easily toasted in the following days.

But now, we have two more members in our family. I can buy a baguette at the store and even before we arrive home, break off a morsel and the twins can gnaw on a chewy piece. They love to eat their baguette plain or with a bit of brie or butter. When preparing dinner, they can wander around clutching a little crispy piece in their hands. We have become a baguette family! The loaf that was purchased and enjoyed yesterday was finished off for breakfast this morning.

Oh the life of the Baguette Quartette...such a happy family!
Next step: foie gras.

Thursday, April 12, 2007

Toxoplasmosis: It's not just about cats...

Here's a link to the University of Chicago's Toxoplasmosis Center. It gives a good description of the what we're dealing with...

More later.

Wednesday, April 11, 2007

The Tiki Gods & Hydrocephalus

This is not a story about the Easter Islands and a mythical creature. It's not a bedtime story that I read to the twins. I guess that everyday I could go on, waxing poetic about the joys and trials of raising Creed & Zelda BUT, that's not what this is about. Yes, our twins are great, funny, sassy, suuuuper smart and enormously talented. They do amazing things that no other toddlers have EVER done before! Uh-huh.

But I need to talk about the Tiki Gods. Our kids are where they are today thanks to the Tiki Gods. These guys are the neurosurgeons that treated our babies during their stay in the NICU at Texas Children's Hospital. They are Dr Robert Dauser, Dr Hatem Megahed, Dr Justin Brown, Dr Thomas and their faithful nurse Sharon. They would emerge silently in NICU at 6am, measure the kids' heads and jot down their incomprehensible scribble of notes. Evan would often lay in wait, we called it "trapping a neurosurgeon." They would then appear again on rounds, stoic, taciturn, unrevealing unless pressured to give answers. What began as a combative relationship of "Sure, we'll just throw a shunt in there and see what happens" turned into a relationship a mutual respect and often humour. Dr Dauser regaled us on a daily basis with a joke or two and still does when we have our 6 month check-ups. We had code-names for all of them and Evan created the Tiki Gods cartoon.

Upon discovering the congenital toxoplasmosis raging through the bodies of our twins, we also had to look carefully at their brains and their eyes. These are the 2 areas that are greatly affected by this infection. Having already told you about the eyes, let's talk brains. Both kids had hydrocephalus that is, swollen ventricles. Fluid was building up in their little noggins and this fluid was placing pressure on their developing brains -and at some point would hinder their growth and therefore their development. So, what does one do? One gets the Tiki Gods to first, tap the brain - that is, insert a long needle into the area and pull off some of the fluid. The baby screams bloody murder and the parent hides off to the side. I cannot tell you how many times both of the twins have had to endure this procedure. The CSF (cerebral spinal fluid) can then be tested to see if it grows any infection or if it's clear - then they can proceed with surgery.

Now, 18 months later, both of the twins have double VP (ventricular peritoneal) shunts - there is a small drain piece in their brain that is attached to a tube that runs down the side of their neck into their abdomen.* The fluid naturally drains off of the brain, therefore avoiding build-up or pressure, and then travels down the tube. It empties into their abdomen and is reabsorbed into their system. Each of the babies has a VP shunt on each side of their brain - we call it "dual exhaust" or "stereo". At first, one could see the lumps under their skin directly behind their ears. Now, their hair as grown over - thank the Lord! - and we don't even notice the shunts.

Will they have them in forever? Probably.
Do will still have to watch for infection? Yes, it's always a possibility.
Will they have to wear helmets when learning to walk? No, no and no.
Will they be able to head a soccer ball? Wouldn't recommend it.

So, thanks to the Tiki Gods our kids have regained the normal use/growth of their brains. It could have been a scary situation. They continue to develop normally and look like any other kids out there - they just have tubes in their heads.

*Zelda had her 1st shunt put in at about 6 weeks old - she technically wasn't even born yet! That shunt became infected and had to be removed. It was then replaced 3 months later before she was discharged from the hospital. She had a shunt revision (it had become clogged)in August of last summer. A few days later, a 2nd shunt was placed. Total brain surgeries: 5.

Creed had his first shunt placed at 3 months of age while still in the hospital. Upon discharge, he went back in at the age of 9 months and had a 2nd shunt placed. Total brain surgeries: 2 - plus numerous tappings.

Tuesday, April 10, 2007

About me, me, me...

Stolen from Karla, the Texpatriate:

Favorite Color: black
Favorite Food: foie gras
Favorite Month: september
Favorite Song: currently the Itsy-Bitsy Spider
Favorite Movie: Blue Velvet
Favorite Sport: swimming
Favorite Season: fall
Favorite Day of the week: sunday
Favorite Ice Cream Flavor: Mint Chocolate chip
Favorite Time of Day: 8am

Current Mood: depressed
Current Taste: uniformity
Current Clothes: black trousers, 2 'boy-beater' tanks, Ann Demeulemeester stilettos
Current Desktop: a photo of all 4 of us leaving the hospital
Current Toenail Color: natural - no time for pedicures
Current Time: 11h21am
Current Surroundings: loft office at my shop
Current Thoughts: I have no money.

First Best Friend: Debbie D. my next door neighbor
First Kiss: spin-the-bottle at summer camp - 5th grade?
First Screen Name: "godet" on a designer's board
First Pet: Misty, an old grey poodle
First Piercing: Ears, maybe 9th grade?
First Crush: 3rd garde, Mark P. - he gave me a book from his Arrow Book Club order
First CD: that would be album...the Allman Brothers "Brothers & Sisters"

Last Cigarette: never, never, never
Last Car Ride: this morning to go to the bank
Last Kiss: Credence as I left the house this a.m.
Last Movie Seen: Ahhh! I can't remember!!!!
Last Phone Call: my sis, Shakti
Last CD Played: Camille - she's french

Have You Ever Dated One Of Your Best Guy/Girl Friends: yes. I married one of them!
Have You Ever Broken the Law: Yep.
Have You Ever Been Arrested: No, but it was close.
Have You Ever Skinny Dipped: Yes, lots of times.
Have You Ever Been on TV: Yes, still am on occasion.
Have You Ever Kissed Someone You Didn’t Know: I guess so.

Thing You’re Wearing: a huge Victorian locket made of volcanite.
Thing You’ve Done Today: met with a sales rep
Thing You Can Hear Right Now: some lounge music down in the shop
Thing You Can’t Live Without: sleep
Thing You Do When You’re Bored: I don't get bored - I make lists.

1. my house
2. the bank
3. my shops
4. Jo's coffe shop

2.Leslie babies

1. Black or White: Black
2. Hot or Cold: Cold

Buy an apartment in Paris

Thursday, April 5, 2007

The things people say - part I

Creed is bigger than Zelda. Zelda keeps her eyes closed a lot. Creed is a boy, Zelda is a girl. This is what people have been known to ask :

-How far apart are they in age?
* 1 minute.

-Are they identical?
*No, one has a penis.

-Is she asleep? OR Is she sleep walking?
*No, she's blind.

-Where they conceived naturally?
*No, they were built in a factory in New Jersey.


Wednesday, April 4, 2007

Julia Roberts is in town...

She's making a film out in Bastrop.
Do I have anything in common with her? Well yes, we both have twins
Do I envy her? Well sure, I'd like to have her money.
Am I filled with the middle-american desire to be Julia? Well no, I like being me.

BUT, the other day I saw her photo in a rag-mag that was thrown in the trash by our nanny - it was the back of her head and peering over her shoulder was her adorable wide-eyed daughter Hazel. It struck a chord. My daughter is a twin and she is absolutely adorable. But she is not wide-eyed. Actually more often than not, Zelda has her head down and her eyes almost closed. They are like slits. She has micro-opthalmia. Her right eye is smaller than her left. Interestingly enough, most doctors have said that her right eye is her "good" eye - the one with hope. At this point who knows...I operate under the premise that I'll know if/what she can see when she can tell us.

Besides being premature and born with congential toxoplasmosis, Zelda was born with dysplastic and detached retinas. Was it a result of ROP due to her prematurity? Was it a result of the toxo? No one can tell us. All I know is that one day in the NICU, the haneous eye doctor from hell said "your daughter's eyes still look hazy" "we can't see in and therefore she can't see out" "oh, and by the way, your daughter is blind and she'll never be able to see." WHAT???
He was so hideously cavalier about the whole thing, I just wanted to scream. And later I did. I screamed, I cried, I even prayed...well, sort of.
We had so many questions. Why hadn't they seen this sooner? Why was the doctor such an arrogant ass? Could she have surgery? Would she ever be able to see? Can one take lessons on how to tell a parent that their baby is blind? Can we enroll AA (arrogant ass) doctor in the class?

We immediately phoned the Oracle - our guide through the world of toxoplasmosis - Dr Rima McLeod at the University of Chicago. More on her later. She recommended that we contact Dr Khaled Tawansy, a pediatric eye surgeon in California. The wheels were set in motion and thanks to the amazingly dedicated neonatologist Dr Peter Haney at Texas Children's Hospital, a transport jet was arranged to take Zelda and Evan to Pasadena, CA. They spent a month out there at Huntington Memorial Hospital and Zelda underwent various procedures and surgeries to remove her lenses (lensectomy) and the clear the vitreous (vitrectomy) in her little eyes. We later returned last summer and both she and Creed had another procedure to keep their eyes healthy. We will return again in the upcoming months to see Dr Tawansy for yet more work and consultation on the state of Zelda's eyes.

So back to Julia...I look at the photo of the movie star and her wide-eyed twin and I want my little girl to have her eyes wide-open and seeing. Sometimes it makes me sad but most of the time I am in awe - not only of feisty, resilient Zelda who walks forward without fear but also of her brother, the smiley, silly Creed. They are toddlers, completely different individuals learning to go through life in their own way. Who says that one "view" or lack of is better than the other?

Creed is starting to jump and run, Zelda is too.
They are just doing it differently.