A Medical Degree Grants Neither Empathy Nor Common Sense

What leads certain people to become doctors when they lack the empathy of a reptile and have clearly misplaced the common sense with which they were born?

Eliza has seen more than her fair share of doctors, nurses and therapists and I have been blessed that the overwhelming majority have been kind, compassionate and empathetic. They have rejoiced at Eliza's milestones and progress and have been saddened by her setbacks and trials. In short, they have been humane and are a credit to their professions.

Then there are the minority of doctors who do not fall into the category of kind, compassionate and empathetic. These people need to either leave the pediatrics, move to a lab and do research or leave the profession all together.

As anyone who reads this blog knows, some of Eliza's greatest struggles post NICU have been with sensory processing, feeding and growth. Like the three gifts of the Magi these three "gifts" seem to go together in one neat package. Very simply if you cannot touch the food, you cannot eat the food and you therefore cannot grow at the rate someone at the CDC has decided you should grow at. If you cannot consume food the old fashioned way (say nosh on turkey leg at the holidays) there are a couple of options to get the appropriate calories. One is a g-tube and the other is to increase the caloric intake of the little bit that you do eat. Each choice comes with some good and some bad. For Eliza I have chosen to go the route of increasing the caloric value of that which she does eat. Since Eliza is, for all intents and purposes, on an all liquid diet, this means a very calorically dense formula. Luckily Eliza is able to well tolerate the osmolarity of this formula with no adverse effects to her kidneys. Eliza is not a large child and never will be a large child. Although genetically she should be predisposed to being rather on the tall side, most IUGR ELBW (intra-uterine growth restricted, extremely low birth weight) babies never become the tallest kid in the class. There is nothing wrong with being the smallest kid in the class, if that is what happens.

Which brings me back to the way certain medical professionals treat parents, like me, who have children with fairly significant medical issues. Some of these professionals treat us like unadulterated idiots when in fact it is very likely that we know far more about our child's universe of conditions and issues than they ever will since they are focused on the one organ or system they studied when doing their specialty residency. Let's all just be clear here, while every doctor may have studied a bit of orthopedics in med school, none of us really would see a dermatologist to treat a hip fracture.

As my friend Sarah recently pointed out, doctors, regardless of their specialty, need to understand that they are treating a whole child, not just one organ or just one body system. While I as a parent may not know how to surgically "install" a g-tube, I am very cognizant of the effect that such a procedure would have on the whole child, on my child, not just her gastric system or her place on the all powerful CDC growth chart.

So here are my ten tips of the day to those of you embarking on a career in pediatrics, or a pediatric sub-specialty and to those of you who are already entrenched in your careers:

1. Do not presume that all parents are idiots. Some of us are not only well educated, but because of the extremely fragile nature of our children's health and the failure of the medical community to collectively address the constellation of problems that are often unique to micro preemies, we parents have actually gone out of the way to educate ourselves on our children's various conditions, treatment options and recent research studies into new treatments for that which afflicts our children.

2. Do not presume that we are so emotionally fragile that we cannot bear to hear "bad" news. Absolutely nothing is achieved by failing to tell us the prognosis for our children, the adverse effects of treatments or the simple fact that maybe there is no real treatment for a particular problem.

3. Do not presume that you know what it is like to raise a medically fragile child or a child with multiple delays and disabilities unless you have done it yourself.

4. Do not tell us what we "must" do for our children simply because you can offer no alternative to that which you are accustomed to prescribing. That which you prescribe to treat the organ or system which is your specialty may actually adversely affect the child as a whole.

5. If you have any intention of treating former micro preemies who have spent extended stays in the NICU being subjected to innumerable procedures which are painful yet necessary, please at least read a few articles about the sensory impact that such procedures can have on a neonate later in life. Please remember that if I ripped you from your mother's uterus 4 months too soon, put you on a hard surface under bright lights in a loud environment and proceeded to insert PICC lines, IV's, perform hundreds of heel sticks, touch your gelatinous skin and have your skin break down from such simple human touch, that you might actually have some sensory integration issues.

6. If you don't know the difference between SIDS and SID, you should not be in pediatrics.

7. When you have a pediatric patient with behavioral and sensory processing issues, please do not tell us that "there are places for children like this." In case you hadn't heard, Willowbrook was shut down decades ago.

8. Do not recommend endless tests unless you can identify for us a particular goal for those tests. If you are only ordering more tests simply because you have nothing else to offer us and cannot provide a decent diagnosis or treatment plan for our children, accept our decision to forgo some of these pointless and invasive tests.

9. Please refrain from prescribing medications to our children when there is no realistic means to administer the medication. For example, if a child cannot chew and swallow even one grain of rice, prescribing a tablet for the child to chew and swallow is utterly useless.

10. Try to remember that these are babies and children you are treating. They are not inanimate. They have emotions and probably understand, feel and remember far more than anyone gives credit. They may not look and act like the Gerber baby, but they are our babies and to us they are more beautiful than any other baby on earth.

The "Why" of It

It seems lately I have been asked (a little too often) by friends, family and even passing acquaintances things like "but why can't Eliza eat?" or "why does Eliza get so upset if she ______" (you can fill in any number of things). The truth is I don't think anyone has a really good answer for the "why" of it all. I mean Eliza has no identifiable neurological disease or defect, no significant structural problem that would impair her ability to eat (save for a shockingly high palette), nor for example did she suffer some acute injury (except for a few hundred heel sticks) that would cause her to be in visible discomfort from simply the touch of sand, a blanket or carpet on her feet.

I find myself simply telling people that her brain is wired a little differently because no one was meant to be born so soon and no one really knows what impact being exposed to the outside world 14 weeks too soon has on a baby's brain.

It has dawned on me though that, much like the misguided belief that micro preemies are just cute tiny babies that need to grow, people probably think a micro preemie's brain is just the same as a full term baby's brain, just a little bit smaller.

Well guess what dear readers, these "tiny" brains look nothing like the brain of a 40 weeker:



Eliza was born at 26 weeks and 4 days, so her brain was not quite as developed as the schematic of the 28 weeker's brain. Due to her IUGR, Eliza was more like a a 24 weeker, so her brain would be closer in appearance to the schematic of the brain of the 22 weeker. In either case, neither the 22 weeker's brain nor the 28 weeker's brain is nearly as convoluted as the 40 weeker's brain. Kind of makes you wonder how all those little fettuccine like convolutions develop when they are exposed to the light, sound, touch, smell, and taste of the outside world when that little ball of fettuccine should have been happily floating in a nice warm dark pool of amniotic fluid.

So I think I am going to laminate the little schematic above, carry it in my wallet and show it to folks when they ask the "why" of it ... kind of like the old "what's wrong with this picture" game.

Speaking of what's wrong with this picture....



Can extreme prematurity be the cause of an utter lack of fashion sense?



Why does Eliza wear her shirts as skirts?



Why?

A Not So Pretty Week

I figure we were about due for a week from hell, things had been just a little too quiet lately. The beginning of the week started out quietly enough, then the nanny left at about 7 pm on Tuesday and by, oh say, 7:03 pm Eliza projectile vomited all over the living room (thankfully missing the area rug, but nicely filling in the little gaps in the floorboards). This continued non-stop (and I really do pretty well mean non-stop) for about four hours. My solution, since it is darn near impossible to clean the floor and hold Eliza at the same time, was to cover the entire exposed floor area with towels ... with every towel I own (the poor planning here revealed itself in the morning when it was time to shower for work). The towel method worked fairly well and by 1 am or so, having gotten about 4 ounces of pedialyte to stay in Eliza, she managed to pass out, so to speak, and slept until 4 am for a bottle. This being Manhattan, a washer/dryer is unheard of in an apartment so the laundry man got an extra good tip this week, bless his heart.

So after a night of non-stop vomiting, puking, refluxing, whatever you would like to call it, Eliza ate close to nothing for two days. Not a surprising development, pretty much her M.O. after a bad night like we had.

The hunger strike came to an end Friday, but Friday was not the happy day I was hoping for. Once again the nanny left at about 7 pm and at about 7:03 pm Eliza decided to climb on the chair, then on the table, then attempt to slide off the table, landing flat on her back with the table cracking her right across her forehead. Having had an average of three hours sleep at a stretch all week, I decided this was the time to become a blithering idiot.

So Eliza is screaming, bleeding a bit and has an egg on her forehead that would make Faberge himself proud and I can't figure out what to do. Then it dawns on me, call the NCCU! Now for those of you who think it is strange that I would call the NCCU 18 months after Eliza's discharge, I would point out that (a) Eliza's pedi works there (b) we visit them each month because the nurses like their Starbucks and cookies and (c) they really are the best folks going. Nurse Janice answers and after a tearful description of the incident and hearing Eliza screeching in the background, she suggests the ER. So I start to pack a bag, get my shoes, etc. while trying to hold Eliza. This is not working so I put Eliza in the living room and put a Backyardigans DVD on. I go to the bedroom to get my shoes and realize I no longer hear screaming from the living room. Of course I assume Eliza has keeled over from the blow to her head. But no! She is doing her ballerina twirl (with her arms in a nice third position for you ballet folks) to the theme song. So I say, huh, maybe I don't need to go to the ER? For good measure I call my sister-in-law (well former SIL, but who's counting) who is a pediatric ER nurse. She assures me that if Eliza can do her ballerina twirl then there is no closed head injury. To confirm this diagnosis I call the NCCU again and speak to Nurse Monica who confirms that ballerina twirling is in fact a known diagnostic test to rule out head injuries. The night ends with a much needed glass of wine for me and a bottle of Resource JFK for Eliza.

Saturday brings us to my parent's where I spend an inordinate amount of time explaining the Faberge egg on Eliza's head to my mother, who thankfully was not judgmental. We visited with my Dad who thought I was his sister June, but we a nice conversation about my husband "Bob" (June's husband) and my (their) farm. Dad is happy that all is well on the farm.

On Sunday I was inspired by my 20% off coupon for potty chairs to end this week from hell with the purchase of a potty chair for Eliza's future use. I mean really how hard can this potty training be? So I purchased not one, but three potty chairs. One for my mom's, one for the apartment and one for the house on Saba.

Eliza was very enthusiastic about the potty chair.

As you can see below Eliza is so very excited to be using her new potty chair ... as a giant cup from which to drink while in the tub. Oye. This week has got to be better.

Not Well

Since last Thursday night, after Eliza aspirated some vomit, she has refused to eat anything. I should clarify: Eliza has refused to eat her usual whopping 2 to 4 ounces of yogurt a day. Normally on days when she won't eat she would take in 20 or even occasionally 24 ounces of formula. Now she is taking in only a total of 12 ounces of formula on a good day, closer to 10 ounces on average. Four of these ounces have to be given to her an ounce at a time while she is sleeping at night. We've been to the ER for dehydration, which was an abject misery. Eliza's feeding therapist has no idea what to try next. God only knows what the nutritionist is going to do each week since Eliza will not eat anything. The GI wants her to be over her lung problems before he starts investigating the cause of this latest refusal to eat.

In addition to taking in only the bear minimum to stave off total dehydration and barely maintain homeostasis, she now gags at the very sight of a bottle. She can no longer tolerate her nebulizer treatments since the mist blowing on her face makes her hysterical. She has to have her mouth pried open in order to get any meds in. Her vomiting has lessened, from every other hour at night to about 4 times a night. At this point getting enough calories to "grow" isn't even an issue, the focus is now on getting enough fluids not to dehydrate. I am really unsure how long she can go on like this.