March for Babies 2013

March for Babies Minneapolis/St. Paul 2013 was another wonderful event.

If you haven’t been to a local walk before, please go.  You will not regret it.  The sense of community is really uplifting.  Running into families who were in the NICU with you is a true joy.  Meeting, in person, families you’ve only met online is awesome.  Remembering the babies who did not make it is an honor.  And, to see a large group of people coming together to support healthier babies…well, that’s one huge dose of hope.  Hope for the babies and families of the future.

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This was my second year walking for Super Wy’s Warriors in memory of Wyatt Olig.  Here’s Wyatt’s poster that was on the path of the walk.

Photo Credit:  Erica Nilsen Eide of http://www.minnesotapreemies.com/

Photo Credit: Erica Nilsen Eide of http://www.minnesotapreemies.com/

In honor of Wyatt, his mom carried Wy-Bear with her for the walk.

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We saw so many wonderful friends from the NICU.  I didn’t get pictures of them all, but here are a few.

There was Gio and Dina, a long time nursery mate in the NICU (Happy birthday on Friday, Gio!).  Could Gio be any cuter?

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There was Shandy whose daughter, Maria, had a very similar course – both 24 weeks with CMV leading to bowel perforations.  Shandy was the unofficial community leader while we were in the NICU.  She was friends with everyone and always had a hug and smile to share.

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Of course, Kathy, Wyatt’s mom and the leader of Super Wy’s Warriors.  Because of her efforts, our team has raised close to $12,000 for March of Dimes in the last two years.  She’s also a great friend.

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There was Joanna, Rich and Isaiah (hiding).  Two-time neighbors in Nursey 2 and Nursery 6 at the NICU and Joanna donated breast milk to Owen.

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There was Becca and her 23 weeker, Emma who took over Owen’s long time spot of bed 2B in the NICU .  Beccca is a fellow Amplatz Parent Advisory Board volunteer and has introduced me to a close circle of NICU mom’s who are ahead of us in the preemie journey.  (you can see her guest post about MOD lobby day here)

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Kellen had a blast.  I think his first crush is Wyatt’s big sister, Meredith who always takes him under her wing when she sees Kellen.

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Kyle and his employer donated the hot dogs for the walk, so Kyle joined the grilling team.  He loved it and has already signed up for the team next year.

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Owen was pretty overwhelmed by the experience in a different way than the rest of us.  There weren’t many of his trademark smiles.  6000+ people is a lot of people for a guy who has spent most of the last two years in isolation.

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I think one of the best things about March for Babies is it doesn’t have the stuffy fundraiser feel.  As you can see from the pictures, it’s a really happy and celebratory event.  However, it can’t be forgotten that March for Babies is the number one revenue stream for March of Dimes.  Donations are used to fund research aimed at finding life saving treatments for children born sick and to prevent prematurity.   I was really overwhelmed by the support that this community showed in giving donations to my fundraising efforts for the walk.  Thank you.  Thank you.  Thank you for supporting this charity that has done so much for our family.  I’ve, so far, raised $1857 dollars this year.

Also, with a background in food marketing, I was able to help make connections to secure food donations from my former employers General Mills and ConAgra Foods.  Thank you Patricia and Michelle from General Mills and Daniel and Angela from ConAgra for the snacks.  I was told by the March of Dimes that there was not a Nature Valley bar or bag of Poppycock Apple Crisp left at the end of the day – both were a hit!  Kyle’s employer, Cargill, donated the hot dogs and many of the supplies, like Ketchup, mustard, napkins, serving trays.  Joanna, Isaiah, Owen and I made the adventure to Sam’s to buy the supplies last week.

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And, with all that love…I almost forgot to mention the weather.  Did you notice by my tank top and Kellen’s shorts?  Spring has finally hit Minnesota!  It seems it’s leaving by Wednesday, but I’m loving 70’s while we can get it.20130429-131008.jpg

 

Marching into Spring

Now that all the holidays and birthday celebrations are finally finished up in our house, these last few weeks of winter are when spring fever starts to set in.  Mind you, I didn’t say, Spring starts to set in…it’s 15 degrees Fahrenheit today…but the idea of spring starts to enter my mind.  I have always loved spring.  The fresh smell, the sun getting warmer and days getting longer.  It’s a time for new beginnings and foreshadowing of tank tops and flip flops ahead.  Two years of cold and flu season isolation, and my love for spring is even stronger.

I can’t wait to get the boys outside more.  If you asked Owen, he’d tell you getting bundled for winter outings is a form of torture that really should have been included in the Geneva Conventions.  Plus, we don’t have sidewalks in our neighborhood, so when the streets have snow banks, there really isn’t a safe place for a winter walk with kids.  Ahhh, I can’t wait to start going for walks again!

And I know the time is nearing.  Do you want to know how?  Because last night I signed up for March for Dimes, March for Babies and it told me that our Minneapolis/St. Paul walk is only 72 days away.  The end of April is only 72 days away!  Owen will be TWO in 65 days.  Goldy’s run is in 56 days!  All this adds up to the official start of Spring being only 34 days away!

Sometime between 34 and 72 days from now, we’ll be able to end isolation for the year.  Could it be?  Is it possible?  Am I seriously going to make it?  Without going too insane? Through two full years of cold and flu season isolation?  Hallelujah!

But the truth is, I cannot complain about cold and flu season without knowing I’m lucky to be in cold and flu season with Owen.  Were it not for the March of Dimes supporting research like surfactant therapy, which has reduced death due to respiratory distress syndrome by two-thirds, Owen and his micro and extremely premature friends would not have had a chance of survival.

We have come a long way since 1974 when my brother, born at 31 weeks, had slim chances of survival.  But we also have a long way to go.  Prematurity is still the number one killer of infants in the United States.  Currently, 1 in 9 babies born here are born too soon.  That’s too many babies with life long struggles.  That’s too many parents who never get to bring their baby home.

That’s why I walk for the March of Dimes.  I walk to help raise awareness and funds to find research to improve the outcomes for those born too soon, and one day, put an end to prematurity.

I walk in memory of Wyat Olig (April 10, 2011 – November 22, 2011).  His time here was too short.  His mom is my friend.  I wish she, too, could complain about cold and flu season.  March of Dimes is the best chance that babies of the future may have better chances than Wyatt. I can’t say his passing will be worth it for the babies of the future, but his passing is a great reminder that there is still much to be done.

Will you join me in walking?  If you’re local, you’re welcome to join team Super Wy’s Warriors.  If you are in another state, you can learn about events in your area here.

If you can’t walk, but want to support my walk, you can donate here.

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Other March for Babies walkers, feel free to share your profile page in the comments.

March of Dimes Lobby Day – 2013 Recap

Friend and fellow Amplatz Preemie mom, Rebecca Michael participated in the Minnesota March of Dimes Lobby Day on January 15. Not being able to go, I was curious to what was involved and her perceptions of the day, so I was thrilled when she willingly wrote about her experience.

20130122-115811.jpgOn January 15th, I had the opportunity to participate in March of Dimes Lobby Day at the Minnesota State Capital. What a great event! It was awesome to be able to advocate for mothers and babies in front of the legislators that represent us.

A little background on my family: after a healthy, full-term first pregnancy, our daughter Madilyn was born in February 2009. Two years later, my husband and I found out we were expecting again – baby due in November 2011! Little did we know that Emma would be born in July at only 23 weeks gestation. My water broke spontaneously (also known as PPROM – Preterm Premature Rupture of Membranes) at 22 weeks/3 days and after 5 days on hospital bedrest Emma showed up kicking at 1 lb, 6 oz and 11 ½ inches long.

Lobby Day started with lunch next door to the Capital. It was so exciting to put names to faces for folks I’d met through the March of Dimes and it’s always great to connect with other families that have had premature babies. We had a quick run-down from Phil Griffin (MOD Lobbyist) about how the day would flow and the specific recommendations for which we were lobbying:

  1. New tests to be added to the newborn screening – SCID (Severe Combined Immune Deficiency – aka “bubble boy” disease) and CCHD (Critical Congenital Heart Defects). With both of these disorders, early diagnosis is the key to treatment.
  2. Legislation to extend the Minnesota Task Force on Prematurity through 2015. This task force “is directed to evaluate and make recommendations on methods for reducing prematurity and improving premature infant health in the state.” (MOD Brochure) For obvious reasons, the more we know about prematurity, the more we can try to prevent it and/or more effectively treat premature babies.

Once we arrived at the Capital, we watched as the March of Dimes honored Dr Ed Ehlinger (MN Dept of Health Commissioner) with the 2013 Champion for Babies Award. Then, it was off to the races!

Of the roughly 50 people who attended, we were broken down into five groups to meet with individual legislators. This was my favorite part of the day – getting to talk to the Senator of my district about issues that are important to me. I was a little nervous at first, but our group leader reminded us that our legislators are people – just like the rest of us. It’s our job to tell them about issues close to our hearts (even if we didn’t vote for them)! In all, I told four different legislators about Emma’s story – our fear about how any baby can survive at 23 weeks, about spending 133 long days in the NICU, about infections and exams and xrays and ultrasounds. Most importantly, I shared how Emma literally wouldn’t be here if it wasn’t for the March of Dimes – they created surfactant, which is a substance that helps coat the lungs of infants in respiratory distress. They also developed nitric oxide therapy, which was another intervention to help Emma’s lungs.

As someone who has never spent much time in politics, this was a fun and easy way to get involved and advocate for babies! The girls and I had a great time and are definitely looking forward to doing it again.

Click here for news coverage of lobby day.

Volunteers with Senator Melissa Franzen

Volunteers with Senator Melissa Franzen

Lobby Day Group

Have you attended a Lobby Day for March of Dimes? How was the experience similar or different? I hope Kellen, Owen and I join you next year, Rebecca! Thanks for sharing and for speaking up for all of our babies.

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! 

 

Super Wy’s Warriors raise more than $6000 for the March of Dimes

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We couldn’t have asked for better weather or company as Kellen and I participated in the Minneapolis March of Dimes March for Babies on Sunday.  With Owen just out of the hospital, he and Kyle had to sit this one … Continue reading