Did I mention "No?"

Naomi is talking! These are the words that we're sure she knows:

Bubble
More
No
Wow!
Up
Uh Oh!
No
Moo
Baa
Woof (whispering woof!)
Meow
Oink (sort of)
Quack
Duck
Neigh
Grrr (like a bear or lion)
No
Mama
Dada
No
Apple
No
Bottle
Go
Ball
No
Out
Car
Outside
No
Off
Hello
Bye Bye

Pretty sure she knows:

Bowl
Banana
Cup
Shoe
Balloon
On

We've also heard her say all of these at least once:

Towel
Avocado
Alldone
Nononononono!



Photos here:

http://picasaweb.google.com/tiff.glassman/090315IphonePhotos?authkey=Gv1sRgCMGs4JGfx4_LPQ#

Pics through Jan 2009

More pics... we're actually up to date now

http://picasaweb.google.com/tiff.glassman/Dec2008Jan2009?authkey=iiDXeQ1CryQ&feat=directlink

More writing when we have more time.

Pics from Nov and Dec

http://picasaweb.google.com/tiff.glassman/NovToDec2008?authkey=Rmx7G0GPC74&feat=directlink

More to come soon... I promise.

Happy Halloween! I'm a fishie!

these pics and more available here:

http://picasaweb.google.com/tiff.glassman/Halloween1?authkey=EKGV7y-Ag3A#

Video a Go Go

Finally, a few videos... well, two. More later.

My hero -- part two

Photos here. Videos after we edit them.

* * *

So it's been way too long since I posted the end to this story. Suffice to say that Naomi is still my hero...

So we take Naomi to see Dr. Atkinson, who apparently has a better tech than Dr. W does. She was a cardiologist in her native China. And she sees in Naomi a coarctation of the aorta. Basically, the aorta comes up out of the heart, feeds the head and right arm, then the left arm and lungs I guess, then makes an arch as it feeds the lower half of the body. In a coarctation, that arch is blocked off, meaning less blood gets to the lower half of the body. When that happens, the kidneys tell the heart, hey, I'm not getting enough blood here, raise the pressure. So the heart works harder, but then the blood pressure in the upper half of the body gets to be way too high. This is dangerous and must be repaired surgically.

This is all mitigated somewhat by the fact that Naomi's patent ductus is still open. That usually closes either in utero or shortly after birth (I forget which is correct) and feeds blood to the lower half of the body until it closes. Naomi's being still open wasn't a good thing, but it had the benefit of getting more blood to the lower half of her body and keeping her out of -- brace yourself for two scary words -- heart failure. But the PDA can close at any time and if it does, that's very very bad.

Naturally, that news freaks the freak out of us. We go back the next week to confirm the diagnosis (Naomi had been squirmy during the echo), and get a second opinion, all confirming the same thing. She needs surgery, preferably before her first birthday.

Time to talk to the surgeon. Dr. Brian Reemtsen is the man. He seems like a nice guy. He says that if it's up to him, he'd like to just get the surgery over with -- no reason to wait. We kinda see it his way and schedule the surgery.

So it's late July and we wake up verrrrrrrrrrrrrrrrrry early to get to the hospital at 4:45 for her 7:30am surgery. Dr. Reemtsen says it'll be a quick surgery, ninety minutes to two hours. Naomi is up all morning and very cranky. We try to calm her, but we're freaked ourselves. Finally the docs give her a little sedative, which calms her. As they wheel her down the hall, she looks at us, projecting calm. Sure, it was drug-induced, but hey, I'll take what I can get.

And Tiffany and I go get breakfast. Two hours later, Dr. Reemtsen comes down and finds us. Surgery went perfectly, he said.

Wanna know how good Dr. Reemtsen is? Check this out. The surgery involved clamping the two ends of Naomi's aorta around the coarctation, cutting it out, and sewing the two larger halves together. Keeping the clamp on too long can lead to bad things -- I'll spare you the scary word this time. Dr. Reemtsen said that the Society of Big Wigs That Recommend Things recommend keeping the clamps on for 40 minutes or less (and obviously the less the better)... and Dr. Reemtsen told us in the pre-op meeting that he shoots for 20 minutes or less. So cut to after the surgery. How long were the clamps on, I asked? 7 minutes. That means, if I understand things correctly, that he clamped her aorta, cut out the coarctation (which is just a millimeter or two!), sewed the two ends together, and unclamped, in less time than it took me to decide what I would eat for breakfast.

We went up to the cardiothoracic ICU to see Naomi, and I won't lie, she didn't look so good. Had a bunch of IVs in her, a chest tube draining fluid, and a breathing tube down her throat. But slowly, over the next 24 hours, these would be removed one by one. (She would also be moved to the much less friendly pediatric ICU. BIG PROPS to the cardiothoracic nurses at UCLA, who were awesome, and a big urging to the peds nurses to get it together.)

Wanna know when we knew everything would be OK? 36 hours after the surgery. All of Naomi's IVs were out at this point except for the central line in her neck. Naomi wanted to crawl around -- she was still learning to crawl at that point -- and was trying to get around her hospital bed, but was restricted by the IV. Finally she gave up. She sat up in the bed and looked at me with a look that said for all the world, "Daddy, can you do something about this thing in my neck? It's cramping my style." Our daughter, the friendly kid with the sunny attitude and the huge grin, was back. She was released to go home the next morning.

We kept her on Tylenol for the next few days, but after that, she didn't really seem to be in pain. The doctors did keep her on some blood pressure medication for about a month -- the kidneys had to get used to the new pressure they were getting -- and that was a pain in the butt because she had to have it three times daily, which meant before daycare, after daycare, and (ugh) 1 am. But that was only a month.

Meanwhile, Naomi learned to crawl, cruise, and sleep through the night, which has been amazing. And now she's even learning to walk -- she can walk behind a push toy or holding onto the stroller.

The doctors say there's nothing that Naomi can't do. She's just like any other kid now, only with a sexy two-inch scar on her back. One doc even said, "She's not a heart patient anymore," which was music to my ears.

My hero -- part one

Post is below, but first -- the latest photos of Naomi can be found here...

http://picasaweb.google.com/tiff.glassman/August2008?authkey=xdcrPa1X9BY




and the videos... we have more but are having trouble getting them uploaded...

* * *

And now, the story.

This story begins about six months ago. At Naomi's two-month well baby checkup, our fantastic pediatrician Dr. Sergis hears a heart murmur. We are concerned, of course, but not worried. Baby books say that lots of babies can have murmurs for a lot of different reasons. We gotta check it, but it's not worth freaking out.

So we make the appointment with the cardiologist... for six weeks later. When we finally see Dr. W -- and let's just call him that -- his tech performs an echo and we get the story. She has a PDA and an ASD. Both are relatively common problems and are likely to go away on their own, he says. We'll keep an eye on them and if they don't close in the next several years -- years! -- we'll repair them surgically then.

Fair enough. So each month, Naomi goes back to Dr. W, and we get the same answer. Keep an eye, likely take care of themselves, maybe surgery in a few years.

In the meantime, Dr. W's office becomes increasingly difficult to deal with. The office isn't computerized in any way -- even appointments are kept with pen and paper. This meant that because we were seeing him in his satellite office in Torrance rather than his main office in Long Beach, we could not schedule the next appointment at the front desk. We had to go home and call the office. Which is difficult to remember when you have baby brain. Annoying.

Then, say you actually remember to make an appointment but need to change it. Well, they don't always remember to delete the old appointment. And then they charge you $50 because you missed the appointment. THAT YOU HAD ALREADY CALLED TO CANCEL.

Also, check out this story... they don't accept checks for the co-pay, only cash. And they don't have $5 bills. So I give the receptionist a $20 and she writes me a receipt saying they owe me $5 next time. Fair enough. Cut to a month later. A few days before the appointment, I get a bill from the office for $2.07 -- the remainder that wasn't covered by the insurance. OK, put it aside to pay when I pay the bills in a few days. Two days later I go to the appointment. I take out my $5 credit. Receptionist #1 -- THE ONE WHO WROTE THE RECEIPT IN THE FIRST PLACE -- looks at me like I'm speaking Aramaic: "What do you mean we owe you $5?" Meanwhile, receptionist #2 is looking at me and the books skeptically and says, "It says here he has an outstanding bill. Better make sure he doesn't have a hold on his account." I say, "A hold -- outstanding -- wait, you mean that bill for $2.07 I got two days ago?" She says, "That's right. You owe us money. We have to check to see if you have a hold on your account." "But I got that two days ago." Long pause. "Right -- no hold. Yet." I say, "Would you like me to pay you the $2.07 right now so there's no confusion?" She says, "I can't take it here -- it has to go to the office in Long Beach." I walk out angry and even more frustrated.

So enough of these things happen and Tiffany and I decide that regardless of Dr. W's talent as a cardiologist -- and I hear he's good -- we simply can't deal with his office anymore and we need another doctor. We get the name but there's one delay and another -- remember, this is just something we have to keep an eye on for years, according to Dr. W -- and it's a couple of months before we take Naomi to see Dr. Atkinson.

Who sees something else. And three weeks later, Naomi has heart surgery.

To be continued...