Steady Progress

TODAY'S PROGRESS REPORT Today Vita is showing more signs of progress. Both of her eyes are opening, and she is spending more time awake. She continues to show more subtle facial expressions, and generally seems stronger. Again, she tried a little smile at one point. The picture below is blurry, but you can see that she's opening her eyes! The doctors think maybe they could remove her breathing tube today... but they'd rather be on the safe side and wait until tomorrow morning. So, the plan is to take her off the breathing machine tomorrow late morning. Then, I'll be able to pick her up and hold her. I can't wait! I'd love to hold her now but I'm glad they are being cautious. Also, they'll keep her in the ICU, and keep her feeding tube and her IV's etc. for at least one more day of close observation. If all goes well, the day after tomorrow they may move us out of the ICU. So, that's my exciting update for now. I'll leave you with some Botulism Fun Facts. (As you can see, Ernie and I have been occupying ourselves with learning everything we can about this thing.) BOTULISM FUN FACTS: 1. Botulism is the single most acutely toxic substance (natural or manmade) known to science, with a median lethal dose of about 1 ng/kg, meaning that a few hundred grams could theoretically kill every human on earth. (For perspective, the rat poison strychnine, which is also considered to be highly toxic, has a median lethal dose of about 1,000,000 ng/kg, and it would take four hundred tons to kill every human). 2. It is also remarkably easy to come by: Clostridium spores (which form the botulinium toxin in the human intestine if inhaled) are found in soil practically all over the earth... particularly in the state of California. 3. Since botulism is so toxic, many (including the US government) have researched it's application as a biological weapon. Although it hasn't been used in overt warfare, it was used in "Operation Mongoose" where in 1961, the CIA saturated some cigars, of Fidel Castro's favorite brand, with botulinum toxin for a possible assassination attempt. The cigars were never used, but when tested years later were found still effective. 4. And it sucks.

Vita Means Life

We are starting to see signs of life... glimpses of our little girl are showing through the paralysis. I was discouraged during "rounds" this morning, when her arms, legs, gag reflex, and pupil response were unchanged from yesterday. This morning, the only improvement we could see was that she was moving her tongue. (She always has been known stick out her tounge.) However, as soon as her "team" of doctors left the room, Vita began moving a little bit more. She opened both eyes just a sliver, and we could see that she saw us. She's making very subtle facial expressions, too. She tried to smile once... but other than that her facial expressions are mostly just cringing in pain. It's hard to watch, but even cringing in pain is progress in her recovery. Her breathing is good, and they continue to step down the breathing machine. They are hoping that maybe in a day or two they'll be able to remove the tube down her throat and get her off the breathing machine. As soon as they do I'll be able to hold her again. I haven't held her in... I can't remember how many days. So, we just get as close as we can, and hold her hand, and sing to her, and she knows we're there.

Pictured below is Dr. June, checking in on Vita. Dr. June saved Vita's life. Since infant botulism is so rare, it doesn't jump to the top of people's minds... The doctors from Dominican sent Vita over here with a suspected bowel obstruction. However, Dr. June gave Vita's tummy a squeeze and knew right away it wasn't a tummy problem. Her quick and accurate analysis of Vita helped to ensure Vita got the fancy antitoxin (BabyBIG) right away, and thus greatly shortened the duration of the illness.

Ernie and I have found many ways to entertain ourselves while we await Vita's recovery. For example, we had a contest to see who could come up with a better name for the "print" on the curtains in the PICU. I called the print "arctic carnival" and Ernie called it "carribean raindrops". Who do you think came up with the better name?

As you probably read in the previous post, the diagnosis for botulism involves injecting poop into mice and seeing if they die. (Are we in the middle ages?) Anyway, they can't tell how much botulism was in the poop, since it's a yes or no kind of test result. However, anecdotally, there are theories that the faster the mouse dies, the more toxin was in the poop, and the longer the recovery. Apparently, our mouse died quickly. Also, there are two types of infant botulism, type A and type B. Vita has type A, which is associated with longer recovery times.

So, unfortunately... Vita's got it pretty bad. However, we're so encouraged to be seeing signs of life, and after all... Vita means "life".

Infant Botulism

It all began on Saturday evening, when Vita abruptly stopped nursing. She simply wouldn't eat, which was quite strange because she's always been a good eater. She was also crying a lot, and just wasn't acting like herself. I assumed that it was a teething related "nursing strike". I eventually got her to drink a little bit from a bottle. When she went to bed that night, I assumed she'd wake up very early and that she would be quite hungry. Instead, Vita slept 11 solid hours (when she usually only sleeps 8). I became very concerned when she STILL wouldn't nurse, and continued to cry. I spent all morning trying to feed her breastmilk from a bottle, from a sippy cup, from a spoon, and finally from a medicine dropper and I had very little success. We took her to the emergency room that afternoon (Sunday afternoon). I assumed that I was being overly cautious and that the ER staff would tell me that she's teething and send us home. Vita's crying and lack of interest in food continued while we waited in the ER. Her crying was nearly constant and got increasingly weaker and more course. When we held Vita, she would occasionally drop her head into our shoulders. Finally, we were seen at Dominican ER. The doctors drew blood and took x-rays of her stomach and chest. As time went on, Vita continued to deteriorate before our eyes. The pictures below show a bit of her deterioration... as she became increasing limp and lifeless. The first photo was taken at around 8pm, and the second at around 1030pm. (PS - I know this is hard to see, but we feel that it is important to document the ups and the downs.) Staff at the Dominican ER determined that her stomach x-rays were very abnormal and they suspected a bowel obstruction such as intesesuption. They arranged for a medical helicopter to fly us to Stanford's Childrens Hospital. (That's when we REALLY REALLY got scared.) They don't usually let a parent fly in the helicopter with the patient, but they made an exception for me... so Vita and I flew to Palo Alto and Ernie went home to collect a change of clothes and headed out to meet us there. We were admitted to the Pediatric Intensive Care Unit (PICU) at around 2am on Sunday night (well, really Monday morning). A cluster of doctors and nurses immediately began a series of testing to try to figure out what was wrong. Within 15 minutes of arrival, staff became convinced that bowel obstruction was not the problem and someone uttered the words "infant botulism" among other potential theories such as various types of meningitis. From the beginning it seemed like a long shot, since infant botulism is so rare... but the symptoms really seemed to fit. The staff at the PICU have done their best to keep Vita comfortable, but she really has been subjected to a lot of testing. The list below is just what I can remember off the top of my head: blood draws (I lost count... maybe 10 or so), stomach x-rays, chest x-rays (daily), tube in nose to empty contents of stomach, IV in hand, new IV in hand, another IV in foot, urinary catheter, nose goop swab, electrocardiogram, poop sample, spinal tap, CT scan (pictured below), ART line, PICC line, assisted breathing tube, and probably more things I forgot. Ultimately, everything other than botulism was ruled out, and IB (infant botulism) seemed more likely to be the case with every "normal" result from every other test. However, infant botulism is diagnosed with a stool sample, and the test can only be done at just a few labs across the country, and it takes a few days. Staff decided that the risk of waiting three days to treat it was greater than the risk of treating it before the diagnosis was confirmed. Here's Vita waiting for the antitoxin... very sick but in really good hands. The treatment for IB is an antitoxin known as Baby BIG. It is extremely scarce, extremely expensive, and quite a big deal. Vita's meds were flown into Stanford and arrived at about midnight Sunday. When the pharmacist walked the medicine to the room, you would have thought she was delivering the Holy Grail. The medicine was administered at about 1:15 am (early Monday morning) and Vita did not have any sort of bad reaction to it (which is really good). The antitoxin attacks the neurotoxins that have not yet bound to the nerve endings... so the toxins that have already been bound will have to just take their course but any other toxins will be stopped short. So, generally, the antitoxin shortens the course of the illness dramatically. IB babies who get Baby BIG spend an average of 2 weeks in the hospital, as opposed to nearly 6 weeks for babies who don't get it. So, Vita is REALLY fortunate to have received the antitoxin so early. Then came the waiting... The progress of someone recovering from IB is slow and can be virtually undetectable on a day to day basis. So we waited for the test results, and we waited for any progress in Vita's gag reflex and movement of her limbs and other indicators. Meanwhile, Vita's poop was travelling to Virginia, and was injected into a bunch of very unfortunate mice. The test finally concluded that YES... VITA HAS INFANT BOTULISM. I never imagined I would be so happy to hear those words! So, it's a huge relief to finally have a diagnosis, to have received the super fancy medicine, and to see Vita making tiny improvements. She's on the rebound and is expected to COMPLETELY recover, although the recovery may be quite slow. Already, her gag reflex is starting to come back, she opens her eyes a tiny bit, and she moves her arms and legs more than yesterday. YAY! Vita has become a bit of a rock star here at the hospital. Infant botulism is extremely rare (about 100 cases per year nationally) so many of the doctors and med students find Vita "interesting". So Vita gets a lot of attention, and many visitors. In fact, the Sr. Associate Dean of the Medical School brought students up to have a look at Vita so they see a demonstration of what infant botulism looks like. Then, they gave Vita this "certificate of appreciation". Not every baby has one of these for the baby book... I know you must be wondering... how on earth did Vita get infant botulism?!? Well, we'll never know with any certainty exactly where it came from, but here's what we know: Vita's botulism did not come from food . We know that for sure. Most cases of infant botulism are believed to come from spores in soil or dust that a baby inhales, and we believe this is how Vita got it.

Finally, it's important to note that Vita is not contagious, so you don't have to worry if you've been hanging out with her. :)

Now that Vita is on the mend, I will post updates about her recovery on this blog. Thank you to everyone who sent us love and support...

Inchworm

Vita is literally on the brink of crawling. Check out this video to see her inching along, while chomping on a soft toy. As an added bonus, here's a quick video of a happy squeak... just for fun.

Zonk Song

When Vita is tired, but trying to fight off the sleep, she sings the zonk song. This sweet, squeaky moan continues for several minutes after she nods off. For video of the zonk song, click here.

Hands of Fate

Well, you've got to hand it to her... Vita is using her hands in new ways every day, and her hand movements are getting stronger and more accurate. Vita pulled herself up on the rail of the bassinet, which means it's time to lower the bassinet, crib, and playpen TODAY. Vita is learning to push buttons and pull levers and turn things on with her hands. Sometimes she also uses her feet. Every once in a while, Vita uses her hands to wave hello or goodbye. Even in her sleep, she likes to keep this pink "Ugly Doll" close at hand... so hands off! She can even hold her own bottle!

Avacado

Vita got her first taste of avacado today. Other than banana (which she's only eaten through mesh...) this was her very first solid food. Here is Vita, awaiting a brand new experience. In goes the first bite of food... from a spoon. Vita seemed a bit unsure, a bit skeptical of the food, but she was certainly eager to investigate it further. A pensive moment for Vita as she contemplates the implications of the Large Hadron Collider experiments and the answers to the secrets it may reveal.

Tripod

Vita is (sort of) sitting up these days. She can sit up if she supports herself with her hands, like a tripod.

Gratuitous Photo Post

I don't have any news to report, but I couldn't stop myself from posting a series of REALLY cute pictures I took at work today. Enjoy!

Five Months!

Vita is five months old today! Vita continues to thrive, and she learns new things every day. Currently, some of her favorite activities include rolling over and then back... repeatedly, grabbing cameras and cell phones, pushing herself up with her arms, and trying to crawl. This month, Vita will start eating some "solid" foods (which really aren't solid at all). Also, Vita only has one more month in the office with me before she retires... and moves on to day care. This weekend, Aunt Mary came up from LA. We had a great time shopping, catching a movie, eating pizza, and playing games. Vita made some silly faces. This is how Vita looks when she's developing some kind of devious plan. And this is the face Vita would make if she were sledding down a mountain. This is the face Vita makes when she's tired but doesn't want to go to bed. On Sunday, Vita went to her first BBQ. Here's Vita with some wonderful friends. And another happy week comes to a close.