A Public Service Announcement written by Anne, mom of 25 week preemie Eliza Grace.
November is Prematurity Awareness Month. 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 filling out your baby registry. People tell you well intentioned, yet terribly stupid 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."
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).
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 prematurity. Or you can do something a bit closer to home and more personal. 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.
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 filling out your baby registry. People tell you well intentioned, yet terribly stupid 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."
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).
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 prematurity. Or you can do something a bit closer to home and more personal. 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.
Thanks Alison for the email and thank you for always getting it when I need someone who knows.
Posted by: Christy | 11/11/2010 at 09:03 PM
Would you want to make a little list of helpful things for people to say? (Or things that suck less, anyway)
Thanks for the guidance!
Posted by: Tabatha | 11/12/2010 at 02:04 AM
"At least you never got stretch marks" and "You're lucky you get to sleep at night"????? Wow, please slap me now if I have ever said any of those things. It just goes to show you how wrapped up in our own lives we can be. I never know what to say in new situations, but saying nothing is better than THAT. Stretch marks and sleepless nights have nothing on worrying about your child living to see another day.
By the way, great call to action, Anne & Christy!
Posted by: Faye | 11/12/2010 at 10:57 AM
Wow, that was so powerful- the tears are still running down my face. I will be sending your special words on to others if that is OK? I will try to do more in the hospitals urged on by your words. I feel so selfish with my time. I feel so honored and blessed to be asked by my exhausted son and daughter-in-law to take care of their darling normal, healthy daughter but I need, by your urging to think farther out of the box. When, I have one more free hour- can I give it to someone so much more in need. Christy, you write so beautifully, I wish you could put into words, that I am not capable of expressing, the need of women, like myself, to give a hour or more every day to "love" a child so needy and to give its parents a moment of peace. I hope I worded this right- that lovely glass of wine is making me sleepy after a long day of taking care of the darling autistic child I care for.
XOX
Posted by: Noel Dennehy | 11/12/2010 at 05:27 PM
Tabatha, I will do a post on this soon; in the meantime, I often found it helpful when people admitted they didn't know what to say b/c sometimes there just aren't words...
Faye, I did have someone tell me I was lucky for not going into the third trimester and that she wished she could have skipped it too; I wish I can remember how I responded but I can guarantee that it wasn't you:)
And Noel, these aren't my words but another Mom's who also had a micro-preemie; I received this message in an email from my friend Alison and they hit me in the gut on Thursday. I was having a rough day anyways and then we saw a CP specialist and though the appointment went well its always a bit overwhelming to discuss all of Elias's overlapping challenges...and sometimes I need to remember how rough things were from the start and that there are families just starting out n this road all over the country who could use our support. So please, fell free to pass this message on...
Posted by: Christy | 11/13/2010 at 09:17 AM
wow, that was great! I thought I knew, but I didn't.. that drove home a lot of the big differences. The line about, "at least you can sleep because the baby is in the hospital" literally hurt to read.. no mother EVER wants her baby in the hospital (aside from that first 24+ hours where you are there together). it's heartbreaking.. even though I knew it all before.. thank you for the reminder.
Posted by: Emily | 11/18/2010 at 06:07 PM