12/12/08 welcome to sleep deprivation

Hi all -
(sorry. No cute pictures this time)

So we just got done with the overnight stay in the self-care room. We did all the feeding and diaper-changing and burping and soothing and so on, which went pretty smoothly. Cassidy did manage to barf up a bunch of formula in his crib at one point, but we got it cleaned up. We're both pretty tired at this point - we decided it's even harder than having him at home, since we're in one tiny room, so we can't have one person sleep in the other room while he's feeding, plus the nurses are also coming in every few hours to check his vitals and administer his IV, and the pullout couch in there was not exactly comfortable.

Despite that, it was a good experience. We both feel pretty solid about the basics and ready to take him home, where we can get a more sensible sleep schedule figured out. (Plus, our huge king-size bed is much more luxurious and comfortable.)

We're going to go run some errands, take a walk, and probably a nap, so it's unlikely that we'll post any more until late tonight or tomorrow.

OK, since you asked so nicely, here's a picture from a couple of days ago.

12/11/08 - overnight in self-care

Hi all -

tonight we're staying overnight in self-care with Cassidy. It's a regular room next to the NICU with a pull-out bed and recliners. We do all the feeding, diaper changing, etc, and the nurses just to the nursey stuff, which is mostly weighing, checking vitals, and administering antibiotics.

Health-wise, he's still doing really well. Eating, pooping, gaining weight. Yay! We had a class with a PT today who showed us some "tummy time" exercises to help him build up the muscles in the front of his body - since babies sleep on their backs, they need time to strengthen their fronts as well. We had a couple of rounds of tummy time, which really wiped him out. After all, he's only five days old. He also had his first sneeze (that we saw, anyway) - he looked a little perplexed by the whole thing.

Not much else to report, which I think is good. We won't know a going-home date for a couple of days yet. Here's a couple of pictures for you!

Updates - 12/10/08

Hi everyone -

Another good day for Cassidy - yay! Things have been going really well; pretty much everything we could hope for.

Cassidy was taken off of phenobarbitol yesterday, and they're monitoring him to make sure there's no further seizure activity. So far everything has been totally clear. He's still on antibiotics until Saturday, but if he continues to do well, we can take him home Sunday or Monday.

He's also eating (and pooping) quite well. He's completely off IV fluids, and eating almost 2oz of formula and/or breast milk every three hours. Holly and I have both been feeding him; the first couple of times were tricky, as he's still figuring out what to do with his tongue, but this evening he sucked down his meal in about 10 minutes.

We got to spend 4 hours with him in the self-care room this evening. Basically, it's a separate room next to the NICU where we do all the feeding and care. The nurse comes in every 3 hours to take vitals and is on call to answer questions or help out, but basically it's all us. Tomorrow we're doing it from noon until 9am Friday, which should be a good test drive for once we get him home.

We read him another book (Is A Camel A Mammal) and listened to music and sang with him. (He was mostly doing background vocals.)

We still don't know if he'll have any long-term problems from all of this, and we may not for years, but that seems to be the way it is with kids anyway. We're getting a crash course in both the scary and joyful parts of being parents, all at once.

Any now for the reason you're really here - the pictures!

More updates - 12/9/08

Hi Friends!

It's been another good day for Cassidy. We feel extremely fortunate, especially given how serious the situation is for some of the other babies in the NICU with him.

First, a quick update, then more details for those who want that.

Several significant pieces of good news today. First off, Cassidy's EEG results were normal, and his MRI showed no significant ischemia (damage). He also got to move into an open crib, meaning that he's not under a heat lamp. Finally, the doctors decided to take him off phenobarbitol to see how he would do without it. This is particularly exciting, as we thought this might not happen until the weekend. He's still on antibiotics until Saturday, so he'll be here at least that long, but if he continues to show this sort of improvement, he might get to come home by Sunday.

OK - what does all this mean? (Folks who aren't interested in the medical mumbojumbo can skip down. Nurses and brain scientists in the audience - sorry if I get any details wrong.)
An EEG is a device that measures electrical activity in different parts of the brain. They attached electrodes all over his scalp and measured the activity of different portions of his brain for about 45 minutes. A normal test indicates that there are not areas of his brain that are non-functional or producing seizure-like activity. It's a hard test to do on infants, as you can't ask them to do the sorts of cognitive things you would ask of an adult, like remembering words or doing math problems, but this is still a good sign.
An MRI is a device that produces a 3-D image of the brain (or any other organ). Sort of like an X-ray, but of soft tissue. His MRI showed that there were no significant ischemic areas, which are areas where blood vessels have died due to damage. This tells us that there is no gross structural damage to his brain.
Infant brains are very hard to evaluate, because they're just starting to grow. We spend the first few years of our lives developing them and forming neural connections that help us learn and think. The bad news is that this means it's hard to know what will happen to Cassidy in the future. The good news is that his brain is still very plastic, and doesn't have a lot of damage to undo or workaround as it grows.
The phenobarbitol is an antiseizure drug. Now that he seems to be doing well, the doctors want to take him off of it and see if the seizures begin again. It takes several days to leave his system, so they'll watch him over the next few days as the levels decrease.

OK - back to cute things. He's eating more and more, and by tomorrow morning will be off of IV nutrients and eating solely from a bottle. Both Holly and I got to feed him; Holly had more luck than me, as he was pretty sleepy when I tried. He also got to read his first two books. We helped a little. Finally, now that he's out from under the heat lamp, he can wear clothes. We started with the hippo hat. (We know it's pink. We don't care.)

Once again, thanks to everyone for all your kind words and support. We've been telling Cassidy how many friends he already has in the world. He's a very lucky little guy to have so many people caring about him.

And now, more pictures!

Quick update - 12/9/08

Hi all -

Here's a quick update. I'll add more this evening.
Things are continuing to look good for little Cassidy. He got an EEG yesterday, which came back normal. He also got an MRI this morning, and the initial results from that are that there's no significant damage. (non-scientists in the reading audience - I'll explain this stuff in more detail later.) He's also eating regularly (every 3 hours) - Holly got to feed him earlier today. We also read him his first two books. He was quite excited.

Everyone here at the hospital is very pleased with his progress. At this point, the plan is to keep him on phenobarbitol until Saturday, then take him off and see how he does. If he's OK for a few days after that, then he can come home.

We're going for a walk now, then up to see him for a while. I'll add more later, along with more pictures. Once again, thanks so much for all of your love and support. It really means a lot to us to know that there's so many people out there wishing us well.

Update - 12/8/08

Hi friends!

Thanks to everyone for all of your kind words and support - we really appreciate it!

We're back up in Sacramento now with Cassidy. We drove up this morning and are staying at The Sharing Place, which is a residence for families of patients currently in the hospital. It's right across the parking lot from the hospital, which is great - it's easy for us to walk over and visit him.

Today was a good day for little Cassidy. The doctor remarked on his alertness, and was impressed that he had his eyes open and was following her movements - this is unusual in any newborn, especially one that's also being pumped full of phenobarbitol.

We were able to hold him for quite a while, which was great for a lot of reasons. First off, it means that there's no concerns about infection. Second, he needs lots of love and encouragement right now. And, of course, we've been waiting for that for a really long time.

He also ate his first meal today. They've fed him twice so far - 10ml at a time. First colostrum pumped by his birthmom, then a combination of breast milk and formula. This is also a good thing - being able to eat on his own is one of the milestones to coming home, and another neurological skill he has.

He also had an EEG - we won't know the results until tomorrow. Holly nearly eviscerated the tech when she was cleaning his head rather roughly afterward. He's got an MRI scheduled for tomorrow morning. These might provide some useful data, although I think that they'll mostly rule out bad things.

We also ate lunch at a restaurant named Cassidy's, which seemed auspicious.

So overall we're getting lots of positive signs, and no one has said anything too scary in the last day or so. But he's not out of the woods yet. His head is still very sore and swollen, and he's still on phenobarbitol to prevent further seizures. The doctors are (wisely) being very cautious with this, as seizures in newborns are a very serious thing. If the EEG and MRI look reasonable, they'll start weaning him off the phenobarbitol and seeing if any seizure activity returns. If everything continues to go well, he might go home early next week. We're still in day-to-day mode at this point.

Once again, thanks so much to everyone for all of your thoughts and prayers and good wishes. It means a lot to all three of us, and little Cassidy needs as many people in his corner as he can get.

Here's some more pictures, including the first appearance of his guardian panda, provided by Grandma Rachel.

Cassidy Update 12/07/08

Hi all -

As you might have heard, there have been some complications in little Cassidy's life. Here's a quick summary.

On Saturday, about 7 hours after being born, Cassidy had a seizure. He was taken from the hospital in Davis (where he was born) to the NICU in Sacramento, where they could give more appropriate care. He had another seizure there. We drove up to Sacramento to see him last night.

The issue:
In addition to being a late baby, he's had two problems:
- They used the vacuum pump to extract him, which caused some head trauma and bleeding under the scalp. His head is sore, but we're hoping this will all heal in time.
- He was without oxygen for some period of time before or during labor. We don't know how long, or what this caused. The seizures could be a result of this, or of general birth trauma.

What we know:
The good news is that he seems to be doing well today. He can breathe on his own, responds to stimuli, can suck on a pacifier, cries appropriately, opens his eyes, and can be soothed. These are the sorts of reactions you would hope to see in a healthy baby.
The bad news is that some sort of event has happened, and we don't really know how it will play out. There could be little or no problem, there could be developmental delays, or there could be something more serious. The doctors are encouraged at this point, but they're not sugar-coating anything.
He's getting very good care right now in Sacramento. Currently, he's receiving phenobarbitol, which has prevented any further seizures (also a good sign), antibiotics to deal with the meconium he was exposed to, and is being fed through an IV to give his system time to recover.
He got a CT scan this morning which showed swelling at the top of the cranium, probably as a result of the vacuum. He's getting an EEG tomorrow and an MRI soon, which will provide additional data about brain function, although this is very difficult to evaluate in newborns.

Long story short:
It's really hard to know what will happen here. We're cautiously optimistic, and everyone at the hospital seems happy with his progress, but there may be problems that we can't anticipate for a while. We'll just have to see how things go.

Things are really day-to-day right now. He'll definitely be in the ICU for several more days. We're heading back up to Sacramento tomorrow to be with him, and will post updates here when we know anything. We have our phones off when we're in the hospital, but you're welcome to leave voicemail or email, but don't be offended if we don't reply right away.

Here's some pictures - he's quite cute!