Why Are We Different Than Other Parents?

Because we woke up every day for months thinking "is this the day my child dies?"

Having thought about this thing that makes us different than parents of healthy children, for way too many nights, I have concluded that it is the constant fear of impending death that caused something in us to change. Normal worry about a child's illness or injury doesn't seem to do this to you. A brief hospital stay might create an acute case of angst in a parent, but it is not the same as a chronic angst that a prolonged and uncertain NICU course can cause. Sure these parents are panicked and upset over the immediate problem, but they don't have this bone weary look we all seem to have.

I, and the other parents on this cruise ship called prematurity, have heard every platitude on the books. You know them and I know them. Heck, I've even said them to people in my pre-Eliza days: "you're not given more than you can handle," "things happen for a reason," "time heals everything," to name a few. To me, these things just caused me to roll my eyes and offered no comfort for the hand that Eliza had been dealt, because maybe she had been given more than she could bear and I could see no justifiable "reason" for any of this happening to her.

There is a chip we seem to wear but one we really wish we had never carried. I think it makes us jaded to the point where we almost lose compassion for other people and their children's seemingly routine ailments and quirks: Your kid had an ear infection for a few days? Big deal, my kid spent a month trying not to die from sepsis. Your kid doesn't like pasta. Big deal, my kid lives on some vile liquid called complete medical nutrition. I can't deny thinking these things but I don't very much like myself when I do have these thoughts. At what point though do we stop focusing on the fact that we are raising micorpreemies and simply focus on the fact that we are raising "children." Not that we should diminish our children's struggles or give up on trying to find answers to the long term effects of their extreme prematurity, but at what point can we put that aside and just enjoy our children, just like those other parents do? I suppose that point is different for every parent, but I think I am, thankfully, reaching that point.

I want Eliza to define her life by the things she can do instead of the things she cannot do. I want her to remember that she enjoyed a vacation because she was in a beautiful new place and not whether she was able to eat the local food on that vacation. I want Eliza to remember her life for the words she could say instead of the things she could not say. I want Eliza to remember her experiences by the sensations she enjoyed instead of by the things she had to avoid.

I think the best way for me to help Eliza enjoy her life is for me to accept that I have been deeply changed by this experience and that Eliza is different than her typical peers. Once I can do that, I can let myself enjoy the things Eliza can do and will do and not to fixate on the things Eliza may not be able to do.

That almost sounds like a New Year's resolution, now doesn't it?

And no post would be complete without a few snapshots of Miss Eliza:

Really, Eliza Did Have Some Christmas Gifts

It would seem that a quick perusal of the photos from Christmas day would lead people to think I only got Eliza Christmas wrapping paper and toilet paper. But a closer look at the photos reveals quite a few toys discarded in the background:











Eliza also decided that while she views her own stroller and high chair as instruments of torture, the doll size ones are just fine:





As most of the readers of this blog know, Eliza won't eat food (not even the almighty Cheerio). But thanks to two years of feeding therapy Eliza will pretend to eat a picture of a cupcake while saying "mmmmm delish." Truly she is trying to drive me insane (but I do love the book Martha!):





But here is some proof that Eliza got gifts and opened gifts:





And last, as other single mothers can attest, the scourge of single-mother-dom is that there are few and far between photos of mother and child. So as Christmas 2008 ends, here is the only known photo of Eliza and I together for Christmas (great huh? ... note to family ... feel free to use the camera at holidays):

The North Pole or Bust

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.