Healthy Babies Are Worth The Wait

Over the last couple of months, I’ve done some volunteer writing for March of Dimes (MOD) Minnesota and have joined their Marketing Committee.  It’s an honor for me to do this work because I believe that without March of Dimes funding of important prematurity research, Owen would not be here today. For example, grantees of MOD have developed surfactant therapy, a treatment that has reduced deaths of respiratory distress syndrome by two-thirds.  In addition to research, MOD also looks to support NICU families.  The hospital that has managed all of Owen’s care, University of Minnesota Amplatz Children’s Hospital, will very soon be the second March of Dimes Family Support Site in the state of MN.  Another focus area for MOD is education.  Their current campaign, “Healthy Babies are Worth the Wait” is aimed at helping women understand the risks of electing, without medical cause, to induce before the 39th week of pregnancy.  As the mom of two preemies, I was asked what “Healthy Babies are Worth the Wait” means to me.  Here is my message to moms considering an medically unnecessary early induction.

You know that woman who says how great she felt when she was pregnant?  She also radiated joy and sunshine the whole time.   She didn’t get morning sickness or stretch marks, and somehow, she escaped waddling through her third trimester.  Does this woman actually exist?  Can she?  I’m inclined to believe that she probably just remembers her pregnancy that way and didn’t really feel that way.  I guess, I don’t really know.

I know this much for sure: that woman is not me.

I am the woman who hit the wall of nausea about fifteen minutes after conception and it proceeded well into the second trimester.  Reglan was the only reason I was able to stay out of the hospital from losing too much weight.  I was so ill that I felt it was better to tell my bosses and several co-workers, that I was pregnant at about 6 weeks because I didn’t want them to think that my extreme fatigue, calling in sick and sudden and frequent trips to the restroom were indications of me not liking, or being good at, my job.

In both of my pregnancies, I was thrilled to be having a baby, however, “sunshine” and “joy” are not words anyone would have used to describe me.  Those hormones!  I have no idea who that crazy woman was that took over my emotions, but even I didn’t like her.  Then there are all the comments about how big, or not big, you are.  Why do people think that it’s okay to discuss a woman’s weight?  Openly?  To her face?   I don’t care how pregnant a woman is.  It’s never…ever…okay to say, “Woah!  You look like you’re about to pop!”  (True story, by the way, and I was only 33 weeks.)

I could go on and on about the inconveniences of pregnancy and there are entire books dedicated to that subject, much of which is embarrassing.  I’ll just get to my point; pregnancy wasn’t exactly fun for me.  In both of my pregnancies, I did complain about how I felt.  In fact, it was right around the time of that earlier mentioned comment (from the extremely rude store clerk) that I wondered if I could possibly get 7 weeks bigger and more uncomfortable.

Unfortunately, I will never know.  I never got those last weeks.

One week later, at 34 weeks pregnant, I burst into a sob and, wide-eyed, stared down the doctor who told me my son was going to be born that day as she started explaining the risks of a premature birth.  A little more than two years later, I again, heard the risks of a premature birth.  This time, I was too numb to cry.  How do you respond when you hear your baby has less than a 50% chance of surviving and if he does live, there is an 80% chance he will have long-term issues due to being born at only 24 weeks?

Some women who have, or are, experiencing those final weeks of pregnancy tell me that I am lucky that I never had to experience those uncomfortable weeks.  I’m never sure how to respond to those women.

Are they really not able to understand the agony of your baby being born too soon?

While I know, I don’t fully understand those last weeks of pregnancy.  I do understand the alternative.  There is the silence after he is born as you wait…forever, it seems…for him to cry.  Then, there is the long, lonely wheelchair ride as you’re being discharged from the hospital while your child is still in the NICU.  As you wait for him to get healthy, you pump, and pump and pump in hopes that a machine will keep your milk supply up, because your baby is not ready to breastfeed.  You have to ask to hold your own baby…and sometimes, you’re told “no.”  There is nothing like being introduced to parenthood by being asked to help hold down your child while the nurse inserts a tube from his nose to his stomach (I said “no” by the way. You do have that right).  There are IV’s, often in the head, so the baby can’t pull it out as easily and when you hold your baby you’re fighting with the cords attached to him.  And then one day, you get out of the hospital and you dread things like weight checks and developmental screenings.  Maybe your child passes, but if he does, it’s probably with a D+.  You anxiously watch as his daycare friends and your friends’ kids learn to do everything faster than he and you wonder, “Will he always be behind?”

The scenario I just described is the scenario of my late-term preemie, Kellen.  He’s the 34 weeker who had about as smooth of a course as a 34 weeker can have.  It took about 2.5 years before I stopped noticing the differences between him and his friends.  He’s one of the lucky ones; it doesn’t seem there will be long term effects.

On the other hand, there is my very complicated course, 24 weeker, Owen.  He too, is doing amazingly well given the events of his 6 month stay in the NICU (7.5 months total hospitalized in his first year).  He started crawling at 18 months old.  A really big milestone is he has just started getting breaks from his continuous oxygen to help him breathe.  A few hours a day he gets to roam without a cord holding him back.  For eating, he’s recently had a surge, so he’s now taking 20-30% (versus the 0% two months ago) of his calories orally.  The rest of his nutrition comes through a button he had surgically placed in his stomach.  These things may not sound like much, but you would only think that if you didn’t see where we started.  Since Owen, I’m no longer afraid to hold him down for uncomfortable procedures.  Now, I actually am performing some of those procedures.  Just last night my husband held him down as I replaced the feeding tube in his stomach.

So no, I don’t understand what a 39-41 week pregnancy feels like.  I’ll admit; it looks pretty uncomfortable.  However, I so wish I did know what it was like to have a healthy baby.  From my perspective of having two babies born not healthy, I can’t imagine anything that would make me want my healthy pregnancy to end early.

Some women think, “But, I’m 37 weeks, that’s not preterm.”  My response is, “Are you really 37 weeks, or is that an estimate of your due date?  Due dates can be off by as much as two weeks.  What if you’re really only 35 weeks?  At 35 weeks, you’re likely looking at a Kellen scenario…best case.”

I can’t relate to a full term pregnancy, however, I can relate to the desire to have the absolute best for your baby.  I can also share that the emotional pain of having a baby born too soon is beyond any physical pain I can imagine.  Unlike the aches and inconveniences of pregnancy and the pain of labor, having a baby that’s born fighting to live is a hurt that you never forget.  I don’t know a preemie mom who doesn’t struggle with guilt, anger, helplessness and jealousy.  Most of all we suffer daily a deep and profound sadness that we didn’t get those last weeks of pregnancy.

Some think that a late-term preemie is not that bad.

My boys were born at different ends of the prematurity spectrum. As different as their journeys are, I can say this:  It doesn’t matter if your child is a micro preemie or late term preemie, it still hurts.  I’d give anything for an extra day, week or month(s) to either of their pregnancies.  I’d give anything for any amount of time to better their odds of living and then thriving; any amount of time to not have to take the long and lonely wheelchair ride out of the hospital while my baby waited in the NICU; any amount of time to not have to ask to hold my baby…and be told “no.”

Any amount of time to have a healthy baby.

What I really want to say to all expecting parent is this; if you’re starting to think you can’t possibly get any more uncomfortable and swollen or that your due date doesn’t work well for your calendar, I cheer you on, and plead with you to waddle through to 39 weeks!  Feel free to complain (just maybe not to a preemie mom), and pat your swollen belly, and know that this won’t be the last time parenting is uncomfortable.  Most importantly, know that it’s a miracle inside of you and that he (or she) is worth it!  Both of you, mother and child, deserve a healthy baby with the very best chances.

Please!  Please!  Healthy babies are worth the wait.

March of Dimes wants to know your thoughts on Healthy Babies are Worth the Wait.  Please join them (and me) for a Twitter chat at 12:30 CST today.  Look for #39weeksmn.  Never done a Twitter chat?  Well, neither have I.  Here is a great tutorial.  If you can’t join the chat, please leave any comments on this post.

Whether you’re joining the chat or not, please pin, tweet, post or share this great infographic that MOD created for the Healthy Babies are Worth the Wait campaign.

Also, if you haven’t signed the petition to light the White House purple on January 3 to honor the 75th anniversary of President Roosevelt founding the March of Dimes, please sign now at http://1.usa.gov/XjOakw. It’s a quick two-step process — provide your name and email, then click on the link that’s emailed back to you and sign the petition.  It’s a simple and free way to give hope for preemie families.  

And, a note of thanks to two friends who took the time to help me edit this post.  Kar and Will, I appreciate you greatly! 

 

Infographics to Share for Prematurity Awareness Month

To help share information on prematurity, I’ve been posting some infographics on Facebook, Twitter and Pinterest.  Please feel free to share with your community.

While you’re on Pinterest, check out the March of Dime’s Board.  It’s full of great information.

 

 

 

I’m planning on several more infographics.  If you’d like your child featured on one of them, please feel free to send a picture to me.  I could use 5-6 more.

Also, if you’re another blogger or preemie site that is sharing information for Prematurity Awareness…please, feel free to pimp your page!  Preemie Families Unite!

 

How to Observe Prematurity Awareness Month

According to the CDC, “each year, preterm birth affects nearly 500,000 babies—that’s 1 of every 8 infants born in the United States.  It is the most frequent cause of infant death, the leading cause of long-term neurological disabilities in children, and costs the U.S. health care system more than $26 billion each year.”

To most, that should be enough to explain why Prematurity Awareness Month is important.

To me, however, prematurity awareness month is also to help the world understand the individual stories of prematurity.  It’s to help people understand that prematurity doesn’t mean the baby just needs to stay in the hospital until he gets a little bigger and then he’ll, magically, by two, catch up to everyone else who had a birthday around his.

Last week as I was walking out of Kellen’s school with Owen, a special needs mother I had never met before mentioned that she’s been noticing Owen over time and was happy to see how big and strong he seems to getting.  We talked briefly, bonding as special needs moms who share a school that specializes in special needs and then she said, “he’s just a preemie?”  I know it was an innocent question, but what it felt like was another mom questioning my son’s special needs-ness.

Prematurity Awareness Month is helping people, like this woman, understand all of our stories.  It’s a month to help the world understand that each premature birth is different with different outcomes.  There are some 23 weekers that go on to have very few issues.  At the same time, there are some 35 weekers that go on to have significant issues.  The only assumption you can make is all premature births face risks.  Each year, 12 percent of newborns in the United States face those risks.  That is too many.

To put it into perspective, in the United States, each year 1.9 Million people are diagnosed with diabetes (American Diabetes Association); 900,000 people have a heart attack (CDC), there are 500,000 premature births (only includes live or considered viable births) and 230,000 people are diagnosed with breast cancer (CDC).  Premature births are one of the BIG health care concerns for this country.  However, too many people do not understand the risks and very real outcomes of premature birth.  Please be a trumpet for the cause and help the world understand that research to help prevent premature births is necessary.  Help them understand each of our stories.  Make everyone aware that there is no such thing as being “just a preemie”.

In honor of Prematurity Month, please participate in spreading the word.  Here are ways you can participate.

  • Keep the message up all month, but be loudest on November 17, World Prematurity Awareness Day.  I will be posting facts and statistics about prematurity on Facebook and Twitter throughout the month, feel free to share with your community.
  • Stay connected with the community on the World Prematurity Facebook page
  • In support of the month, March of Dimes is launching their new campaign “Healthy Babies are Worth the Wait” share the information with your community.  Follow the national and your regional (MN in link, there is one for each state) March of Dimes pages on Facebook and Twitter.  For those of you in MN, tag your tweets with #39WeeksMN.  If you live in another state, ask your regional office what their hashtag is.

Let’s unite as one big voice so we can help the world better understand each of our children’s journey and work to help reduce the number of premature births.

Why is Prematurity Awareness month important to you?