Talia a week after surgery

I hope this isn't too dark to see anything. Talia's been looking awfully pale since returning from the hospital, probably from the blood loss during surgery. But as you can see, she hasn't exactly slowed down much.

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Another bedtime report

Tonight's exchange as I was putting Zeke to bed:

Z.: Daddy, what's a barton?
Me: Um, I don't know.
Z. (reflectively): I don't know either. I was just ... saying something. Maybe it's a little ... thing. Or a little toy. I don't know.

Heh. I have no idea what he was thinking of.

Healing

This looks awful, but if you saw it on Monday, this looks like a near-miraculous transformation. The incision, so far, is healing up fast & very cleanly.

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Talia's third day in the hospital: a few photos

These are from Wednesday. You can see that her face is a little puffy. The swelling is mostly gone by now.

A note on Utterz.com

Over the past couple of days, I've been posting almost everything to this blog using a service I just discovered, called Utterz. (I find it a little embarrassing to say the name, but that's the only drawback I've discovered.) Anyone who's reading this and wants a painless way to run a mobile blog ought to check it out. You can post anything you want from your cell phone or from the website -- text, photos, video, or phoned-in audio -- to a mobile blog on the Utterz site (mine is here). Utterz will then re-post your updates to a blog, to Facebook, to Twitter, or to any site where you can embed a bit of Flash code.

Anyhow, though, I was pretty impressed by the service, but it also turns out that there's a strong community around the site as well. A couple of people have been following Talia's story over the past couple of days and have posted encouraging messages of support for her (and for the rest of us). I logged on tonight, and look what I found:

It's a little audio-and-photo message to Talia and her folks (us) wishing her a good recovery, from the good people who run the Utterz website. (Click the orange triangle to hear the audio; click here for a larger version of the photo.) I couldn't believe it. I was totally bowled over. Anyhow, thought I'd share that. The internet can actually be very cool sometimes.

Update: Talia & the rest of us

Everyone's home from the hospital now. Mary (my mother) is staying with us. Things are far from being back to normal, but they seem to be progressing in that direction. Talia's very happy to be home, but still not really comfortable; she wolfed down a lot of solid food at dinnertime (which she's had very little of in the last three days) and then promptly threw it all up again. Heather's now trying to get her to sleep, and she's complaining a lot. Zeke is kind of freaked out by the whole situation. He was overjoyed to see his mother after four days, of course, and it was truly charming to watch how happy he and Talia were to be reunited. Talia got all worked up when she saw him and started shouting and putting her hands out to him, and he came over and kissed her. He keeps looking at the incision and asking, "Why does Tally have a line on her head?" (My answer is, "That's where the doctors were fixing her head.") Zeke however does not want to be alone at all; he has been putting up an incredible fight at bedtime and acting very clingy, whiny and cranky (unusual for him). Anyhow, as someone remarked to me, it seems as though we've sort of all been running on adrenaline over the past two weeks, and now reality's about to set in. I have to return to my classes tomorrow morning. Heather's taking the next week off. And, well, that's about where things stand right now.

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Talia's home!

Here's Talia playing after being home for about ninety minutes. She's really tired but has to be all into everything before she can rest. Especially since her big brother isn't home yet.

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Talia sleeping on her father

She's doing much better today. Eating more, more active, less pain, incision healing fast. Pulse is still elevated, though, which has them a little mystified.

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With Zeke at the doctor's

Zeke's had a cough for the part few days. I'm having him seen now. Just in case he needed antibiotics... He doesn't, it turns out.

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Photos: Talia and Heather in the hospital

More here.

Update: Talia's recovery, day 1

Talia has a ways to go before she's fully recovered but she is looking really good. When I got there at 11 a.m. this morning her color was great, she was active, looking around, acting playful, etc., even trying to say a few words and laugh. She spent most of the day sleeping. She's having formula to eat, not a lot, but she's not throwing up either. She surprised the nurses by not needing another blood transfusion or more Fentanyl. The incision isn't bleeding at all. She's looking a little puffy around the face though, which means she might swell up a lot tomorrow, and she still seems fairly uncomfortable. So, we'll see how it goes. So far, though, the recovery's looking great.

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A few hospital photos

More here.

Here's the email update I just sent out...

I sent this to a bunch of friends, family, students and colleagues.

Hello again –

Talia, my daughter, finished her surgery this afternoon at around five p.m. She is going to be at Children’s Hospital at least through the end of Wednesday, probably Thursday. The surgery went fine with no complications. The surgeon kept telling us that he thought he had done a fabulous job and that she is even cuter now than she was before. Her head definitely looks different. For the moment she is very uncomfortable and not keeping food down, but I understand that’s more or less normal.

Heather, Zeke and I have received an tremendous amount of support from friends, family, students and colleagues, and I hope to be able to thank all of you individually in the coming days. For the moment, though, I’ll just say: thank you all. I appreciate it.

Nathan

I'll be going back to the hospital tomorrow. Zeke had a good afternoon with his Grammy. I plan to drop him off at daycare in the morning.

Leaving the hospital

Update: Talia's sleeping peacefully and I'm heading good for the night. H. is staying.

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Reconstruction phase of surgery

So far, so good, though it sounds like she's lost an awful lot of blood.

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First incision

They made the first incision into Talia's skull about half an hour ago. So far, so good.

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Update: Talia is under anesthesi

She's being prepped for surgery. We'll know more in half an hour.

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Waiting for the anaesthesiologis

They just told us there's going to be a two-hour delay due to complications with the operation scheduled before hers.

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Talia in the pre-op waiting room

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1022070015

Nathan Rein posted a photo:

Another test. Bear with me.

Published by

Original source : http://www.flickr.com/photos/nbr/1683172731/...

Surgery tomorrow

I'll be posting updates on Talia's surgery here, from my phone, as they happen. If this works, that is.

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The punning gene must skip a generation

Zeke, while playing with trains: "Daddy, this one pulled so much coal, he got cold."

Audio post: post-day-care-drop-off report on Zeke and Talia's latest shenanigans

If the sound doesn't work, call (510) 248-0386 (probably as of about 3 pm EDT) to hear it, or, if that fails, click this link for an updated number.

More two-year-old humor

While driving to daycare this morning, Zeke informed me: "Daddy, I have a little cold. I'm sniffy. And I'm coffee."

Video diary: an update on Talia

Feeling too fried to write. Basically, though, the news is reasonably good, and things seem under control. She'll go into surgery next Monday and stay in the hospital probably four days. Call (510) 248-0386 to hear the audio if necessary, or click this link to get an updated phone number if that one doesn't work. I wasn't able to extract the sound. Sorry.

There is an update on...

There is an update on Talia. She is scheduled for surgery on Monday. She will be in hospital for four days and should make full recovery with in a month, so that's good news.
Click here to listen

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Today as we where driving...

Today as we where driving to day care Zeke looked out the window at the sky, which was little bit pink and yellow, and he told me: "Daddy, it's twilight. The sun is mixing. It's mixing with pink suns and purple suns."
Click here to listen

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A few recent photos

Here's Zeke captured while bathing...


At the Norristown zoo, posing as a swallowtail butterfly (note the die-cast train in his right hand)...

Those two were taken with my phone.

And here's Talia, at a recent outing to Pretzel Park in Manayunk, PA. Taken with Heather's phone.


That's it. No news on Talia's health. She continues to act normal, though now that we know about it, it's easy to find the little ridge of bone running down the center of her skull. The next doctor's appointment is downtown on Tuesday. Apparently CHOP (where we're taking her) is the place to go. I also learned that dolicocephaly means "long head," scaphocephaly means "skiff-shaped head," and craniosynostosis means "skull-bones together."

The clinical name for Talia's condition...

... is variously dolicocephaly or scaphocephaly (premature closure of the sagittal suture of the skull). The general name is craniosynostosis. I've never heard of it before, so I've started doing a little online research, the results of which can be found here.

Another update on Talia's health

Here's the email I sent out to friends and family this afternoon:

Hello,
I've just heard back from the doctor regarding the results of Talia's various tests from last week and unfortunately the news is not good. The MRI shows no problems. However, the skull X-ray shows premature fusion of several of the skull bones. I am taking Talia for a neurosurgery consultation next week. It's possible that they will decide the problem is not serious enough to justify intervention. But the normal thing to do in such cases is surgery, and, from the limited amount I've been able to find out from the internet, it is quite invasive and traumatic -- basically cutting the skull apart and screwing it back together, involving a multi-day hospital stay.

I'll keep you updated as I get more information. Thank you to everyone for your concern.
Nathan

I'll post updates here too.

Video diary: Talia, one day post-MRI

Click To Play

Not much going on in this ninety-second video, but at least you can tell that she's more or less back to her normal, active, cheerful self. She woke up pretty groggy this morning, but by mid-afternoon seemed to be full of piss and vinegar again. She's doing a lot more cruising -- you can see her take a tentative step right near the end of the clip.

A little bit more of an update on Talia

It's been an exhausting day, but everything's gone fine so far. I went to work this morning as usual, and Heather took Talia to get some blood drawn (we're checking for lead, given that we live in an old house with some peeling paint). Heather reported that she didn't cry during the drawing. Then off to the pediatrician for a quick exam, since her eye has been looking puffy. They found an ear infection. She'll be on amoxycillin and ear drops for the next ten days. Then the hospital for the day's big event: first a skull X-ray, which I missed (Heather reported some crying), then an MRI (under sedation with chloral hydrate), which took a half hour and was completely uneventful. After that we went home and she slept for three hours. Now she's up, acting pretty groggy from the sedative (which will probably continue until mid-day tomorrow), but her appetite is back and she's obviously in a fine mood. Aside from the little bandage on her arm, you'd never know what an ordeal today was for her. I was especially amazed at how well she seemed to manage being prohibited from eating for half the day. She's a big, big eater these days.

The big question is, of course, what the tests will show, and we won't know that for at least four days. So all we can do is sit tight. No doctor so far has given us any reason to think this is anything other than a perfectly routine screening based on her head size and shape, so I'm not too worried. But still, being at CHOP (Children's Hospital of Philadelphia), and seeing all those sick, pale, bald children with their parents, -- well, it left both of us pretty rattled.

A lot of people have been very supportive, and we of course are very grateful.

By the way: the previous post was done over the phone, using Jott, an excellent free phone-to-text service. They have a mysterious transcription mechanism that relies on a combination of computer speech recognition and human transcribers, presumably in some overseas location. That explains the misspelling of "survived."

Here is an update, Talia...

Here is an update, Talia just finished her MRI and we are on our way back home. She servived the day so far fine, we should get results on Tuesday.
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Talia and Zeke in the kitchen

If I were into puns, I'd make some crack about a beany baby, but I won't. Talia likes beans, anyhow.

Zeke climbs a ladder

Click To Play

This was at a big birthday party with a lot of kids and parents milling around. One parent beckoned me over when Zeke was already halfway up this thing. I couldn't believe he negotiated it entirely without help; it made me kind of nervous, but he was completely confident and secure. I made this little video with my phone while his way up for the third time, I think. He was pretty pleased with himself but evidently didn't think it was much of a big deal.

This one is for the folks back home

Click To Play

This is an old favorite from a long time back. A favorite of a very small group but still a favorite.