[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, Cassandra got a daypass to go visit Juliet. This was in the afternoon. It was Cassandra's first time to put on street clothes again, and first time to get in a car again, so it was a test of whether or not her scars are healed up enough to leave. It all seemed to go ok, so she will check out of the hospital today.

Juliet's jaundice is much improved, so she looks pink and not yellow, which is encouraging. It doesn't mean her liver is doing everything it should, yet, but it means at least the weird blue lights are doing their job, and her liver is pitching in.

She is off the 600 micropuffs/minute ventilator, and back on the regular kind. Apparently during the early morning she had developed air pockets in her lungs, with part of the lungs starting to dry out. It took them a while to collapse the air pockets (at first I thought they were saying they collapsed the lungs, and was very confused), but by the time we saw her they seemed to be happy with the state of her lungs. It seems like the crises happen at night or very early morning, while when we visit during the day she is doing well.

Cassandra had seen her very briefly before she was transferred from St. Mary's to Cardinal Glennon, but was surprised again at how tiny she is. But apparently some of my friends know of people who were tinier, who are healthy adults now.

The next big hurdle is that there is a blood vessel, which has a big long medical name but which is sometimes called "the shunt" for short, which needs to collapse. The reason is that this blood vessel sends the blood to her navel/umbilical cord primarily, and it needs to collapse so that the blood will get sent to her lungs primarily. One of many changes that need to happen because Mom isn't taking care of things like oxygenating the blood any more. So, they will decide today if she can be given medicine to try to do this, or if she has to have it pinched off surgically.

The medicine has some side effects, which could make it more likely to have internal bleeding problems, so she has to have above a certain threshold of platelets and some other blood components, before they will use this medicine. On the other hand, the surgical method obviously involves losing some blood.

A friend of mine from Illinois told me Saturday that she had read in Parenting magazine, that Cardinal Glennon Children's Hospital is ranked #3 in the nation for NICU's. So at least we know the people making this decision are among the best.

Cassandra will need to go back to the hospital some time towards the end of this week to have her staples removed. Around that time we'll probably make a decision on when to head back to Austin.

If Juliet looks like she's within another week or so of being stable enough to transfer to Austin, and there aren't any insurance issues with doing that, then perhaps we'll do that. Dr. Mantych said Friday that after the first few weeks most premature babies are stable enough to be transferred, if we want to.

On the other hand, if she is looking like it will still be many weeks or months before she will be stable enough, then we will head back to Austin sooner, and fly back to St. Louis every week or two. It is quite possible that flying us several times, is cheaper and safer than flying Juliet once, so we'll just see what happens.

Dr. Mantych did say that, if a premature baby gets through the first few weeks without issues, their chance of survival goes up to something approaching that of a normal newborn. We're not there yet, but so far, nothing irreversible or unexpected has happened.

We're probably going to stay at the Ronald McDonald house this week; the social worker from Cardinal Glennon said Friday she would make a Monday reservation for us.

On the upside, the weather is much better in St. Louis than in Austin, this time of year.

'til tomorrow,

ross

[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]

Holy cow, I just looked at the message board again. Thanks, everyone, for all the good thoughts. I will make sure Cassandra sees it today, it will help cheer her up! Thanks again.