Thursday, October 29, 2009

A Meal

I think after 3 years and 7 months, Eliza may have had her first meal tonight.

OK, so maybe "meal" is a bit of an exaggeration. Perhaps a "nosh" is more accurate. Alright, let's be honest here, in most cultures the combination of this:



and this:



is a snack.

But to the parents of the non-eaters of the world, a thin "schmear" of peanut butter on a Ritz cracker is in fact a meal. It clearly has a carbohydrate and some protein. And since peanuts are a subgroup of legumes and legumes are a subgroup of vegetables, then I think it is safe to say Eliza ate a vegetable tonight. Yes, the logic is a bit stretched, not unlike Reagan's effort to categorize ketchup as a vegetable (since some tomato had made some contribution to the ketchup).

Eliza has in the past scraped the peanut butter off of the Ritz and then licked the peanut butter off of her finger. But tonight, she at the Ritz with the peanut butter on it. The combination of these two things going in Eliza's mouth at the same time is what I think makes this Eliza's first meal.

Time to break out her baby milestone book and add a page.

P.S. please do not leave comments about the questionable nutritional value of a Ritz cracker. They will not be well received. :)

Friday, October 23, 2009

A Refresher Course

Recently I was asked to recount (under a very bright light) the story of Eliza's birth. I can usually do this without batting an eye, inject some black humor into the tale and move on. Perhaps it was the giant klieg light, but I was temporarily reduced to a blithering idiot. Perhaps it was the well intention and very honest commentary by one participant in the day's event to the effect of "wow, she was beyond small," or the slight wince when I showed pictures of Eliza at 4 days and 8 days old.

But that is not what is pissing me off today. What is annoying the bejesus out of me is that I have read yet another total crap story about a "miracle baby" and have seen an even more ridiculous interview with parents who are deluded because they think since their babies (25 weekers) have been released from a nearby NICU that they are "just fine."

It takes a one very, very tough baby, a boatload of hard work, incredibly smart and dedicated doctors, nurses and parents (yes, we do deserve a smidgen of credit), dozens of medications, countless medical procedures (many painful beyond your average person's imagination), thousands of hours of therapy, a couple of million dollars of medical care, some really excellent guess work to figure out what is wrong and how to fix it and at least a moderate sense of humor so you (the parent) is not placed in a locked ward, to get from this:




to this:




So can someone riddle me this: why does the media insist on portraying these babies as perfectly fine once they walk (figuratively) through the platinum door of the NICU? Why isn't the media interviewing the parents a year later when the reality of raising a micropreemie has really set in because the baby still can't roll over? Where is the Today three years later when your child is still on a liquid diet and you are wasting another day of your life arguing yet again with some dimwit at Oxford United HealthCare who still isn't not grasping that your toddler really doesn't eat actual food?

I suppose these are rhetorical questions, since those of us on the cruise ship known as the SS. Micropreemie have figured out that people only want to hear the happy hoo-ha and gloss over the "details" of our children's' lives.

Sigh.

Tuesday, October 20, 2009

Ha! I Am Not Imagining This!

I have long suspected that Eliza has an unusually high tolerance for pain. Let's face it, the kid can run headlong into a wall and barely flinch, while announcing "Eliza Grace, are you OK? I'm OK!" So nice of her to answer her own question and reassure me that she is fine.

But there seems to be something to my very basic, non-scientific theory that if you yank a baby from a warm, dark uterus and splay her out on a warming tray (a/k/a the "french fry tray"), poke and prod her under hot, white lights with a ton of noise and minimal analgesics and anesthesia that something is bound to be not-quite-right in the long haul:


Infant pain, adult repercussions
September 25th, 2009 in Medicine & Health / Neuroscience

Scientists at Georgia State University have uncovered the mechanisms of how pain in infancy alters how the brain processes pain in adulthood.

Research is now indicating that infants who spent time in the neonatal intensive care unit (NICU) show altered pain sensitivity in adolescence. These results have profound implications and highlight the need for pre-emptive and post-operative pain medicine for newborn infants.

The study, published online in the journal Frontiers in Behavioral Neuroscience, sheds light on how the mechanisms of pain are altered after infant injury in a region of the brain called the periaqueductal gray, which is involved in the perception of pain.

Using Sprague-Dawley rats, Jamie LaPrairie, a graduate student in associate professor Anne Murphy's laboratory, examined why the brief experience of pain at the time of birth permanently decreased pain sensitivity in adulthood.

Endogenous opioid peptides, such as beta-endorphin and enkephalin, function to inhibit pain. They're also the 'feel good' substances that are released following high levels of exercise or love. Since these peptides are released following injury and act like morphine to dampen the experience of pain, LaPrairie and Murphy tested to see if the rats, who were injured at birth, had unusually high levels of endogenous opioids in adulthood.

To test this hypothesis, LaPrairie and Murphy gave adult animals that were injured at the time of birth a drug called naloxone. This drug blocks the actions of endogenous opioids. After animals received an injection of naloxone, they behaved just like an uninjured animal.

The scientists then focused on the periaqueductal gray region to see if inflammation at birth altered the natural opioid protein expression in this brain region. Using a variety of anatomical techniques, the investigators showed that animals that were injured at birth had endogenous opioid levels that were two times higher than normal.

While it's beneficial to decrease pain sensitivity in some cases, it's not good to be completely resilient to pain.

"Pain is a warning sign that something is wrong," Murphy explained. "For example, if your hand is in water that's too hot, pain warns you to remove it before tissue damage occurs."

Interestingly, while there is an increase in endorphin and enkephalin proteins in adults, there is also a big decrease in the availability of mu and delta opioid receptors. These receptors are necessary in order for pain medications, such as morphine, to work. This means that it takes more pain-relieving medications in order to provide relief as there are fewer available receptors in the brain. Studies in humans are reporting the same phenomenon.

The number of invasive procedures an infant experienced in the NICU is negatively correlated with how responsive the child is to morphine later in life; the more painful procedures an infant experienced, the less effective morphine is in alleviating pain.

The study by LaPrairie and Murphy has major implications for the treatment of infants in neonatal intensive care. On average, a prematurely born infant in a neonatal intensive care unit will experience 14 to 21 invasive procedures a day, including heel lance, insertion of intravenous lines, and intubation. All of these procedures are quite painful and are routinely conducted without prior analgesics or anesthetics.

"It's imperative that pain be treated," Murphy said. "We once assumed that a newborn infant is insensitive to pain, and this is clearly not the case. Even at that period of time, the central nervous system is able to respond to pain, and our studies show that the experience of pain completely changes the wiring of the brain in adulthood."

The next steps in Murphy's research include the study of how neonatal injury at birth alters stress responses, as well as the affects of infant injury on long-term learning and memory.

More information: The article, titled "Neonatal injury alters adult pain sensitivity by increasing opioid tone in the periaqueductal gray," appears in the September 2009 edition of journal Frontiers in Behavioral Neuroscience, Vol. 3, p. 1-11.

Source: Georgia State University (news : web)


Now maybe someone will listen to me when I say that there must be some infinitesimal neuron in the brain that tells babies how to chew and swallow that just doesn't get hooked up before 27 weeks.

Sunday, October 18, 2009

Pumpkin Anti-Defamation League

As some of my closer friends know I secretly long to be Martha Stewart (without the jail time) and I can be quite crafty (literally and figuratively some would say). Eliza understands there is a Halloween and that pumpkins play heavily into the season. Her 1/8th slice of cheese will only be consumed if it is "shape like a punkin." She is getting a reputation for stealing small pumpkin-like gourds from the local grocer. So I (foolishly) thought she would be thrilled at the idea of carving or perhaps painting her ever growing collection of pumpkins.

Not so much.

So we will have none of this:



Or that:



Our pumpkin will look like this:



Instead we will celebrate Halloween with Eliza's favorite decorative touch: using mini ice cream scoops as toppers for her paints (notice the precision with which she lines these puppies up):







Although our pumpkins will remain paint-free, Eliza continues to enjoy painting. Here is her rendition of a turtle:



And if you use your imagination, you can see a Saba Iguana in this one (head is pointing to the right):



Admittedly the Iguana looks like it was rendered after a run-in with a pick-up truck, but I think there is potential here!

Sunday, October 4, 2009

Informal Three and a Half Year Evaluation

Before you get your knickers in an uproar and accuse me of pretending to be a developmental pediatrician or an OT, PT or SLP, I did use the word "informal" in the post title. But really, after 3 years of evaluations a reasonably observant parent can figure out the highlights of some of the testing.

Block stacking is a perennial favorite at evaluations. I think it is fair to say that Eliza has mastered that skill:





She even admires her own work:



Eliza continues to fail the "let's pretend" test with the wooden cake and babydoll. Personally I think Eliza should be exempt from this one since not only would she never consider eating a birthday cake, she certainly is smart enough to figure out that this one is tasteless:



Which brings us to the dreaded speech evaluation. As I suspected, my playground observations confirm that virtually every neurotypical 3 to 3.5 year old can converse with the basic "who, what, where, when why and how" questions. Typical playground conversations involve parents yelling: "who's truck is that and where did you get it?" with the 3 year old answering: "it's Sally's and she gave it to me." The second part of this answer may well be a lie since very few three year olds part with their trucks in the sandbox. And we all know that every three old worth her salt has asked "why" enough times to make her mother head to the wine cellar.

Not so at Casa de Eliza. Eliza is sorely lacking in pragmatic speech or what is also called social language.

Eliza has a large vocabulary and for example, can identify many dozens of animals, can tell the difference between a crane, eagle, flamingo, scarlet macaw, dove and lovebird. But ask her if she went to school or what her teacher's name is and you get a big blank stare. Eliza can answer questions, but you quickly realize many of those answers are simply parroting the question. For example, "did you color at school?" gets the answer "I color at school." By the same token "did you go parachuting at school?" gets the answer "I parachute at school."

How do you teach a child to communicate and not just recite words? How do you get a child to converse in even basic ways? And if the child can't really do that, how do they ever learn to socialize with their peers? Feel free to post any pearls of wisdom.

Prematurity... Should It Be a Classification for Special Needs Services?

It is hard to fathom that in a couple of days Eliza will be ten. I look back on the past decade and and am amazed, and often baffled, how sh...