Prematurity Awareness Day

Today is Prematurity Awareness Day.

Technically November is Prematurity Awareness Month, but since every cause now has an awareness, day, week, month, some causes tend to get lost in the shuffle.

A few years ago I posted a lengthy blogpost about why prematurity sucks.  Below is my updated version of it (yes it is okay to plagiarize myself).

I think the main thing we need to be aware of about prematurity is that it sucks.

It really sucks.

Prematurity takes what should be a normal infancy and turns it into a journey into medical hell. It robs both parent and child of a normal infancy. Instead of filling baby books with milestones like "smiled for the first time" you make note of milestones like "weaned off ventilator." 

You and your baby are robbed of quiet, private moments. Instead, the two of you spend those moments in a room filled with strangers, doctors, nurses, monitors, alarms and machinery you didn't even know existed when you filled out your baby registry.  

People tell you well intentioned, yet terribly inappropriate, things like "things happen for a reason," "God doesn't give you more than you can bear," "at least you never got stretch marks since the baby was born so early" or "you're lucky you get to sleep at night since the baby is in the hospital."  It would be better just to say "wow this sucks" or "is there anything I can do to help" and actually mean it.

You wake up day after day wondering if this is the last day you will see your child.

Prematurity financially devastates families. 

Contrary to popular belief, there is no insurance fairy who pays the tens of thousands of dollars of co-pays or the endless "uncovered" things like speech therapy or adaptive equipment. Even "good" insurance isn't "good enough" to cover prematurity. Instead of paying for a babysitter, you have to pay for a nurse to watch your child, instead of daycare, you have to hire a nanny, instead of working full time you have to take a leave or work part time because of the sheer number of medical appointments your child will have after leaving the NICU.

Prematurity is isolating, physically and emotionally. 

Because of the baby's fragile immune system, you have to limit to whom and what the baby is exposed. Of course friends and family assume you are simply nuts, because, as they will all tell you over and over, everyone needs to be exposed to germs. Actually not. It is emotionally isolating because no one, other than the other shipmates on the SS Prematurity have even a clue as to what it is like to take your infant to a minimum of one doctor visit every week, not have a single day for just you and your baby because three therapists show up everyday, on schedules that are convenient to them not you and your baby.

Prematurity devastates families emotionally (see all of the above).

Prematurity doesn't necessarily end when you leave the NICU.

Depending upon the level of a child's issues resulting from prematurity, parents may spend years and years fining the right school, the right educational model, the right educational tools to help their child learn appropriately.  If you are a parent of a typical child, teach your children to have compassion and empathy for  children who may learn differently from them. Ask us why our child has an aide or para, before just assuming that it is for some outrageous behavioral issue.  And stop using the word "retard" in your everyday language. Just stop it.

So what can we all do to help make this suck less?

Well, you can donate money to various charities in the hope that some of the research they fund might end the many, many causes of premature birth. 

Or you can do something a bit closer to home and more personal, which is what I prefer to do.

Call your local NICU or its support group and ask what you can do to make this whole thing suck less. Small things can make prematurity suck less. For example, my mother, my aunt and I make blankets and hats for the babies. There are dozens and dozens of babies that have worn my aunt's tiny "wee caps" and many who have been warmed by one of my mom's blankets and even though my blankets are far from "perfect" they are made with love. Some people make isolette covers, some people donate disposable cameras for parents to leave at the baby's bedside (yes we do take photos of our babies in the NICU), other folks donate gifts cards for coffee or gasoline to be given to those in need in the NICU. Others donate story books to the NICU (yes we read to our babies the same as you would at home). If you are feeling really generous, ask if you can send over bagels and coffee for a Sunday brunch for the parents and nurses (they get hungry too). Not all parents in the NICU can afford NICU clothes for their baby, so think about donating some NICU shirts or preemie clothes to your local NICU.

Even if you can't prevent premature births, you can make prematurity suck less for the parents and the babies who are in the NICU right in your hometown.

So this November, let's see if we can all make prematurity suck less.

November in New York City

Originally I had planned my end of October post to be one filled with photos of Eliza and her Halloween shenanigans. 

But then Sandy arrived.  

We still were able to trick or treat since we were extremely fortunate to be in an area of the city that did not suffer any power outage or any real damage, so Eliza and her friends had a bit of normalcy. Eliza and I were fortunate to be able to share our home with some friends who did not have power, so the kids thought it was one never ending play date and were spared the devastation that so many have lived through.

Eliza and I have been through pretty bad hurricanes on Saba, but seeing a hurricane hit a city of 8,000,000 people, plus the millions of people in New Jersey and Long Island is a far different thing.  Sometimes we think our city and our beaches are invincible but we were reminded in a terrible way that our city and shores are not immune to the force of nature.

We are now a week post-Sandy and with the election upon us, the news is already focused on other more national and global issues, which is understandable to a degree,  But as I talk with people in other parts of the country, I am shocked by their assumptions, very wrong assumptions, that everything is just fine here.

It is far from fine.

This was not a free week's vacation from work and school.  People have died, people have lost everything they had, people have been displaced from their homes, from their hospital beds, people are cold and hungry.  Lots and lots of people.  And many of them, like the people in Far Rockaway, Queens, are very poor and do not have the resources to move to a hotel and wait for an insurance check to come in.

Even in areas, like Manhattan, where things are approaching "normal", they are far from "normal."  The power has been restored to lower Manhattan, but many, many buildings cannot turn up the power because of low voltage/high voltage issues.  Some offices, like mine, have electricity but there is no heat, no phone, no internet.  These are minor issues to face in the scheme of things, but I give them as examples of what is going on the in areas of the city that are perceived to be "back to normal."  

Maybe there is a perception that New York has resources, wealth and has survived 9/11 so we have endless resiliency?  I don't know what the answer is, but it is has been very disturbing to me the number of people who seem to think everything is approaching the hunky-dory phase here.

So if you are inclined and are near one of the affected areas, you can volunteer your time to make meals for people who are hungry or donate food to a local pantry or help a neighbor gut their house.  If you don't have money to donate, maybe you have time to donate.  Maybe think about having your kids learn the value of charity, they are never to young.   If you're not in an areas where you can do these things, you can donate to the Red Cross, even if it is just the cost of your next cup of Starbucks.

You can help and there are thousands of people who need help.