[this text was originally posted on carepages.com; it is being put here so it will exist somewhere besides my laptop, and Juliet can read it when she gets older]

Hello,

Yesterday was a mixed bag. On the good side, Juliet's blood pressure is up, and she's breathing well (still with ventilator, but doing more of the work herself), and her jaundice is pretty much gone (they may take the blue light away completely soon).

Probably part of the reason for her improvement is that they have stopped giving her medicine aimed at collapsing the "shunt". This is the blood vessel which diverts some of the blood away from the lungs, which is supposed to collapse after birth but for premature babies usually doesn't without help.

The medicine which is supposed to help this happen, causes all the blood vessels to constrict, so it is hard on the taker. In Juliet's case, it didn't do the trick, either. This is not uncommon; the doctor had warned me before that it only works in something like half the cases, and the rest of the time they have to close it surgically.

So, probably today, but in any event sometime soon, Juliet will undergo an operation to close this shunt (aka "PDA", which stands for a big long name I can't remember) manually. The incision is in her side, and they say this is a fairly common operation with a high success rate. But, of course, it is still an operation on a very small baby, so our own hearts are in our throats.

If this succeeds, then she will oxygenate her blood better. Also, more blood will get to things like her digestive tract, so we will be able to start nourishing her through a feeding tube instead of an IV. It will also remove all sorts of complications she's currently dealing with, so lots of other things could improve, if all goes well.

Cassandra and I will probably wait until this operation has occurred, and a couple days afterwards to see how it goes, and then take a trip back to Austin to take care of some things there before returning to St. Louis. Cassandra's birthday is this Sunday, it turns out, so we'll celebrate that in the Midwest and then head back to Austin shortly thereafter.

We had visitors from southern Illinois yesterday, including Winfrid, the 9-year old boy who is fascinated with all things related to plumbing, wiring, and so forth. He was very interested in my reproduction of Dr. Mantych's drawing showing Juliet's internal plumbing (PDA and so forth). Perhaps he could become a cardiologist.

We all went to "the Hill", which is an old Italian immigrant community. There was an Italian restaurant on every other street corner, and lots of Italian flags. Italian in St. Louis is roughly analagous to Mexican in Austin, in terms of the influence on the city history. Not nearly as many new immigrants, though, I think.

Cassandra's mood was much improved by the visit, and also by being moved into the Ronald McDonald house so she can get a bit of a routine. She misses her cats, but we have a couple friends in Austin taking care of them so all is well on that front.

Things are better in the reading department; I've started a newly purchased book on string theory. I guess I might be missing my book club books this month. :( Cassandra now has a pile of magazines she calls "fluff", which means things like Teen Cosmo, which is what she wants right now. But I'm ready to read her some string theory, if she has any trouble getting to sleep.

Ha! I laughed out loud at Karen B's post offering to let us send her stuff. You know, that's the first time anyone has offered that. :)

St. Louis is about Austin's size, but the buildings are about 50 years older, made of brick, and separated by much wider roads. Imagine if roads like Lamar and Guadalupe had parking on them. And the parking lots are often free to the public. It all makes for much friendlier drivers, I have to say.

Thanks for the encouragement and advice from everyone, and cross your extremities on Juliet's behalf this week!

thanks,

ross

p.s. Almost forgot one more thing! Yesterday while we were visiting, Juliet started moving about more and pushing up against the Saran wrap-looking stuff that is stretched across her crib. So Cassandra put her finger up against Juliet's little hands and feet as they would do that. Then the nurse said it was ok to touch her (we have to scrub with iodine and then soap before entering the NICU), so we pulled back the film and Cassandra got to put her finger in, and Juliet's tiny little hand grabbed hold of it for a while. After that, when the film was put back, Juliet held that hand up to her nose for a while. We imagined she was getting Mom's scent. Don't know if that's really true, but it was cool to see Mom and daughter interact a bit.

[this text was originally posted on carepages.com; it is being put here so it will exist somewhere besides my laptop, and Juliet can read it when she gets older]

Hello again,

Today was a good day. Juliet got her operation, to close the "shunt". We were going to visit her around 1:30 today, and they called my cell phone as we were walking in from the parking garage to ask if we could come in, because the surgeon's schedule had time in it, and they wanted to talk to us beforehand. So we talked to the surgeon, signed some more consent forms, coo'ed a bit at Juliet, and also introduced her to Aunt Kate.

For those who don't know her, Kate is a friend of ours, who grew up in St. Louis although she doesn't live there any more. She was visiting for the July 4th holiday. She stood in for the "father of the bride" when Cassandra and I got married, so perhaps I should have introduced her to the nurse as "Grandpa Kate". But that might have taken too much time to explain.

Everything seems to have gone as planned. We went back to see her a second time today, after the operation, and her blood pressure was increased (this is good, for her) and she looked fine. Of course, she's not moving much because she's still sedated and on anaesthetic from the surgery, but her blood pressure, respiration, and so forth all looked good.

If the next 24-36 hours go well, then we will be even happier. That will mean that she will be able to get oxygen into her blood better, and also that she will be able to start coming off of the dopamine. Dopamine is a medicine which, in her case, is being used to keep her blood pressure up. Anytime we are able to put fewer medicines into her without a problem, that is good, because every medicine has side effects, and the fewer you have to take, the better. Especially if you are as small as she is.

After we celebrate Cassandra's birthday on Sunday, we will probably get ready to return to Austin for a bit. Then either Juliet will be able to be moved to a hospital in Austin (in a Lear jet, no less), or if the insurance doesn't want that then we will come back to St. Louis. But, once she's stable enough to move, Dr. Mantych was guessing that the insurance company will want to move her to one of their preferred providers, which means they will probably be willing to move her to Austin.

Not that St. Louis hospitals haven't been great for us, but we will feel better once we can have her in Austin. But she has to recover from this surgery, and we want to see her looking stable for a week or so, before we can do that sort of thing. Definitely no rushing that sort of thing.

So, one more hurdle cleared by little Juliet. Thanks again for all the good vibes coming from Illinois, Texas, and all over the place. Lots of stories of people who were born earlier or smaller than Juliet and pulled through, so that is encouraging. Thanks to everyone also for all the help and offers of help.

So far, so good,

ross