Sharing our story--Jameson

I am a NICU nurse and a NICU mom.

In July of 2008, my husband and I were so happy when we found out that we were expecting our first baby. My pregnancy was uneventful until my 32-week appointment showed that my baby wasn't growing well. I was placed on bed-rest and made it two weeks before I became sick with preeclampsia and HELLP syndrome. Little Jameson Patrick was born via emergency c-section and weighed four pounds, five ounces. We didn't hear him cry. I remember straining from the operating table, trying to see past the sea of people, wondering if my little guy was okay. Finally, a little kitten mewed twice--that was Jameson's cry. We were so thankful.

Amazingly, he spent just six days in the NICU step-down unit. We couldn't believe it when we took him home weighing four pounds, two ounces! What I have learned about being a preemie mom, though, is that the story doesn't end when you leave the NICU. We struggled with some common preemie problems in his first eighteen months: low-weight gain, reflux (GERD), motor delays, and physical therapy. Now he is a thriving and quite wonderful two-year-old.

I have walked in the March of Dimes for five years. I walk not just for my son, but for all the babies that I take care of in the NICU. I walk for all the times I have administered surfactant to premature baby lungs that wouldn't work with out it; for babies that would not have lived if they hadn't been able to receive nitric oxide; for babies that have avoided heart surgery by receiving a medication instead. I walk for moms who pump breast milk every three hours for months so that I can feed that milk to their babies through a tube; parents who wait days, weeks, or even months to hold their babies. I walk because although March of Dimes research has brought great technical advances, we still don't know the reason why many babies are born preterm.

--Proud mom, Jenn Ross

Sharing our story--Baby Max

We are trying to spotlight several families that have been touched by March of Dimes. None of us are in this alone, and we are all walking together for stronger, healthier babies. Here is the story of Baby Max:

Max was born at 25 weeks gestation, EXACTLY! I was admitted two days earlier when my water broke. I woke up on that morning in labor and he was here within a couple of hours. I had an infection in my placenta. Not sure what caused it, no symptoms, etc...

Max was large for his gestational age at 2 lbs 2 ozs. He had good skin and those were two important things which really helped him along the way.

I waited 19 days to hold him... in that time he underwent heart surgery and bowel surgery, and my greatest fear was that I would hold him for the first time, when they placed his dead body in my arms. That was my lowest point...

It was hard to know whether to bond, or keep a distance until we knew things were safe. It was hard to juggle spending time in the NICU with him and still being a family unit and caring for our other two children, who were 3 and 5 at the time. It was hard watching him suffer and struggle and being powerless to help him, hold him or heal him.

Max underwent 5 surgeries, he had PDA ligation, 3 bowel surgeries for his NEC (necrotizing entercolitis) and a dual inguinal hernia repair. He was on the vent for more than 3+ months. He was on IV nutrition and no oral feeds for 3+ months.

Max received 3 doses of surfactant, the first right in the delivery room, to help him breathe. We know research funded by the MOD made this possible.

We also learned through March of Dimes research that breast milk would give him a 50% better chance of surviving NEC. So when I couldn't produce milk of my own, we found a milk donation option.

The ONLY parent information we received in the NICU was provided by the March of Dimes. They helped us understand the terminology, the treatments, and started us in the right direction so we could ask questions, consider options, and be involved in our baby's care.

Max is a whopping 23+ lbs and growing stronger every day. We still face struggles. But we are the lucky ones.. because Max is alive. He will l turn 1 on April 16th, and we've chosen to celebrate his birthday at the Kansas City March for Babies. Instead of gifts, we are asking friends and family to join us, and donate to the March of Dimes. They helped save our baby, and us, during those 123 days in the NICU. The most difficult 123 days of our lives...


Jennifer Hamblin Robinson

2011 Ambassador Family

The Vire Family, Gerry, Jennifer, & Cameron


Dear March for Babies Team Captains,

We are honored to serve as the 2011 March of Dimes Ambassador Family for Kansas City and have this opportunity to share our son’s journey of survival. We never anticipated delivering our child early or with any complications, but we now know that prematurity can affect anyone.

When we found out that we were pregnant with our first child, we were so excited for this new chapter in our married life and we were having a normal, healthy pregnancy. Unfortunately, about 17 weeks before he was due, we started having complications. I began to experience severe upper abdominal pain and decided to visit the Emergency Room. After sending me home with medication to ease my pain, I was monitored to make sure that the baby was still doing well. I followed up with a specialist and he told me I had developed HELLP syndrome and pre-eclampsia, a condition where my blood pressure was dangerously high. Since my health was now at risk, I needed to be monitored at the hospital until I had the baby. Gerry and I were overcome with emotion as we realized our dream of having a healthy baby was slipping away.

On October 14, 2007, exactly 15 weeks early, Cameron Jake was born at Overland Park Regional Medical Center. He weighed just 1 pound even and was 11.25 inches long. He was sent to the Neonatal Intensive Care Unit (NICU) and I was sent to the adult Intensive Care Unit because my condition had worsened. It was hard being away from Cameron as I was healing in the ICU; I was not able to see him until he was nearly a week old. Cameron’s health was so fragile at first, that it wasn’t until two weeks after he was born that I finally got to hold my son for the first time – what an amazing feeling! Every day in the Neonatal Intensive Care Unit was touch and go, but Cameron always proved to be a fighter. We were so grateful for the surfactant therapy, created as a result of March of Dimes-funded research, which contributed to saving his life. This therapy helped Cameron eventually be able to breathe on his own. After spending 104 days in the NICU, Cameron finally came home without any medical equipment or follow-up needed.

Today, we are so happy to report that Cameron is a happy, healthy, intelligent three year old. While Cameron is still catching up to his classmates in size, in our eyes he is perfect as his personality is larger than life and he has a zest and energy about him that can light up a room.

It is so important that we all continue to support the March of Dimes to raise money for the fight against premature birth. The reason Cam is alive today is because of the research that has been funded by the March of Dimes, research that has led to lifesaving treatments and technology. Without the March of Dimes, the chances that Cam would be with us today are slim. It’s that simple. The dollars YOU raise DO make an impact.

Thank you for walking together for stronger, healthier babies!
The Vire Family
Jennifer, Gerry, and Cameron
2011 Kansas City March of Dimes Ambassador Family

Imagine........

This was written by mothers on the Shareyourstory.org website. It was a thread where they were asked to finish the sentence “Imagine…” in a way that helps others understand the effects of premature birth. Let us know how you would finish the sentence in the comments section.

Imagine........

Imagine.....your baby's birth weight being less than a bag of sugar or a 2 pound free weight or a 32 oz soft drink

Imagine…your granddaughter's tongue the same size as a tic-tac

Imagine...not hearing your child cry until he was a month old

Imagine…trying desperately to stay pregnant for as long as you can, even at risk to your own health

Imagine…giving birth only to be told that your baby has a 40% chance of survival and if she does survive, she will be blind, mentally and physically handicapped and never walk

Imagine…the smile on your face and the tears in your eyes when one year later, that same child RUNS past that same doctor

Imagine...having a hospital feel like home and your house feeling like a place you occasionally visit to sleep

Imagine…not seeing your daughter’s face until she was four weeks old because she was ventilated

Imagine…being able to fit your wedding ring on your child’s arm

Imagine…leaving the hospital empty handed

Imagine…planning your newborn’s funeral

Imagine…having the hospital call a week after the baby’s birth and asking if you’re having fun with your new baby…the new baby that you’ve never even held because he’s in the NICU struggling for life

Imagine…boxing up all of your baby things because it’s too painful to look at them in the nursery
Imagine…signing papers to allow for surgery on a baby who weighs less than a pound and a half

Imagine…the pain of parents all around you losing their babies, grief and guilt mixed with relief that it’s not you

Imagine…holding your baby when she’s two weeks old and realizing that the blanket she’s wrapped in weighs more than she does.

Imagine…feeling the pain of seeing pregnant women

Imagine…having to choose to stop breastfeeding the child you’ve already taken home in favor of his twin sister who is still in the NICU

Imagine…the fear of ever having another child

Imagine......Being afraid of, and afraid for, your child.

Imagine......Not even knowing who's lips, eyes, nose, or chin your child has because you can't see their face for all the tapes, tubes, and eye masks.

Imagine....Your husband knowing your nurses and the NICU routine better than you because he's been there for five days already before you ever even get to see your son.

Imagine...the looks on the faces of your friends and family when you try to talk about the future

Imagine...Being ecstatic when your baby hits 4 pounds, or 3, or 2...

Imagine…knowing your baby is born but the only sound you hear is the door closing as they take her away

Imagine... getting condolences instead of congratulations when your child is born.

Imagine... Not getting to hold your child until he/she is nearly a month old.

Imagine... hearing comment after comment on all the things people didn't think your baby would ever do.

Imagine... that some of the most peaceful times of your day are when you are sitting attached to a breast pump!

Imagine... how quickly the rough past fades away when your child first smiles at you.

Imagine…trying to produce breast milk that your baby desperately needs even though your body isn’t prepared to produce it

Imagine…knowing your baby literally inside and out because of x-rays, heart monitors, brain scans and blood tests

Imagine…dressing your baby for the first time in doll clothes

Imagine…knowing that no matter what happens, your life will never be the same

Imagine....being able to turn this life altering, tragic journey into something that can help many, many other people!

Anyone use Pampers?

If you are a Pampers user, I suggest you collect the points and use them to help earn money for March of Dimes!

In case you are unfamiliar with this process, here are the directions. Inside of the diaper packages you can find a sticker that includes a code. They are also found inside the wipes containers (and I assume the wipes refill packs). After collecting the codes, go to Pampers.com and enter the codes on their website. Then if you go to the "Browse Catalog" button, you will see that you can donate these points to March of Dimes!! For every 10 points, Pampers will donate $0.10 to March of Dimes (up to $20,000 total). Wouldn't you LOVE to help March of Dimes earn an extra $20,000?? This is so simple.

Ask your friends, your neighbors, your NICU. I have contacted our NICU nurses to ask them to pass along the word. I know our NICU used Pampers Preemie diapers with my son, and I collected nearly 400 points while were in the hospital. Just think if we all added those points together. Maybe you could call your NICU and ask if they collect the points instead of throwing them out--don't be afraid to tell them why!

Thank you Pampers for partnering with March of Dimes. Tell everyone you know to collect those points to help reach this impressive total of $20,000!

Do you need t-shirts for your team?

EA Graphics if the official t-shirt supplier for March of Dimes. If you are looking to purchase t-shirts for your team, check them out. These t-shirts are fairly inexpensive, and they have a lot of options. This year they are offering an extended line of sweatshirts, hats, bags, and other items. Check it out! The family team shirts are offered in purple, charcoal, and orchid. EA Graphics also offers an option to make a customized shirt. You can purchase the family team shirt, and have the company add personalization to the back of the shirt. There are so many varieties with this company!

Let me know if you have any questions about ordering & I can try to help. I know last year our team ordered these t-shirts, and then ironed on our team name on the back of the shirt.

Adding a fundraising badge to your email

Is everyone in the fundrasing mode?? Are you trying to get your message out there to as many people as possible? Your personal March of Dimes site has badges that you can add to your Facebook account, your personal blog, and your email. This is an easy way to remind your friends and family to help you earn your goal.

There have been some people having trouble adding the badge to their email signature. Here are the directions to follow. Then, with every email you send out, there will be an opportunity for people to help you reach your goal.

Adding Your Fundraising Badge in Outlook 2007
Share
1. Create a new “TEXT DOCUMENT” on your desktop (right click on the desktop and go to NEW - TEXT DOCUMENT)
2. Paste the code into the text document that you created, save the file as MFB2010.htm (erase .txt from the file name and replace with .htm)
3. In Outlook, go to Tools > Options and the Mail Format tab.
4. Click the Signatures button.
5. Click the New button.
6. Name your signature ‘MFB2010’
7. Click OK
8. Close Outlook
9. Locate your signature folder by navigating to these folders or go to Start, Run and paste one of the following: for Vista: %userprofile%\AppData\Roaming\Microsoft\Signatures, for XP: %userprofile%\Application Data\Microsoft\Signatures
10. There will be three files in that folder called ‘MFB2010’ (in three formats: .htm, .txt and .rtf). If you cannot see the file extensions, go to Tools / Folder Options / View and deselect ‘Hide extensions for known file types’, or right-click on the file and select ‘Properties’, that will display the file type in a new window.
11. Drag the .htm file you created into the folder. Replace the .htm file in that folder with the file you created. Make sure that they are named the same.
12. Restart Outlook 2007.

Leave us a comment and let us know if you have added a badge to your signature. You can also tell us if you still have problems--we'd love to help you out!

Opening Bell

Check out Sherii Shephard at the NY Stock Exchange kicking off the March for Babies campaign!!

Save the date!!

2010 March for Babies

Saturday (yes Saturday) May 1

Kansas City Power & Light District.
Registration at 8 a.m., walk at 10 a.m.

Woohoo - who's excited for this year's march??!!! This is my favorite time of year as we get ready for this awesome event (okay - could also be that SPRING is approaching which will mean burning some energy in the backyard and less illness!!). I'm thrilled to be back down at Power & Light - what a great place. We've got a great route this year for those of you pushing strollers and lots of fun entertainment. I always say that if this wasn't a March of Dimes fundraiser... I'd STILL want to come bring my kids, we always have a blast! I hope you and your family is able to come!

You can sign up at http://www.marchforbabies.org/.

Please e-mail me at kmcburney@marchofdimes.com or call me at 913-387-3605 with any questions.

Thanks!!

Kara McBurney

Help us thank Johnny Dare!

As you may know, we have the largest, most successful Bikers for Babies – nationwide - right here in Kansas City. You may also know that radio personality Johnny Dare of 98.9 The Rock has been instrumental in the success of this event for the past 14 years. (Since 1995, Bikers for Babies has raised $3.7 million in Kansas City!) His promotion of Bikers for Babies on-air and passion for the March of Dimes mission is to be commended! And I am asking for your help in thanking him…

We are putting together a “thank you” book for Johnny to present to him after the event. We want this book to be full of pictures and notes from local families who have been touched the March of Dimes. If are able to help, here is what I need:

*A letter to Johnny telling a little about your family/child(ren) and thanking him for his involvement in Bikers for Babies and support of the March of Dimes.
*A picture of your child(ren) holding a “sign” (poster, piece of paper, etc.) simply saying “Thank You.” Please just include the words “thank you” as we would also like to put together a slideshow with pictures of all of the adorable children to thank ALL riders! I am hoping to add to this slideshow year after year and have it be something we can show at various March of Dimes events.

These can be sent to kmcburney@marchofdimes.com. Since we will be putting this book together immediately after the ride, the deadline is September 20, 2009 – the same day as the 15th Annual Bikers for Babies at Kansas Speedway!

Thank you in advance for your help with this project – I know it will be something Johnny will appreciate and cherish for years to come. I have attached a sample from a local family team captain if you are interested in getting some ideas. If you have any other team members who has a child touched by the March of Dimes mission, please feel free to forward to anyone who may be interested!

For more information about the Kansas City Bikers for Babies, visit http://www.bikersforbabieskc.org/.

Please let me know if you have any questions! Shhhh..... we want to surprise him with this!

Did you see "Who wants to be a milionaire" last night?

Sherri Shepherd, March of Dimes celebrity volunteer and co-host of "The View," won $50,000 for the March of Dimes, her favorite charity, on Tuesday night's special 10th anniversary edition of "Who Wants To Be A Millionaire," hosted by Regis Philbin (after accessing her "Ask the Audience" life-line on a question about the movie, Notting Hill). The smash hit show returned to ABC-TV for a two-week prime time engagement. As a special feature, each episode will conclude with a celebrity player taking the hot seat, hoping to correctly answer a single question worth $50,000 for his or her favorite charity. The March of Dimes thanks Sherri for donating her winnings to our cause and for her ongoing support of our mission to improve the health of babies by preventing birth defects, premature birth and infant mortality.

Time article

Very interesting article from Time on premature birth.

Sprint Family Fun Day

The next Sprint Family Fun Day at the Kanss City Power & Light district is THIS Saturday! The theme is "scientastic"... the kids will get to make wax hands, slime, super balls and more! Hope to see you there!

Join us for some fun at the KC Power & Light District!

Attention fellow bloggers

Do you have a blog? A Caringbridge site? A family website?

I would love to add a list of local familis to the sidebar of this blog.

If you have a blog or a website - will you please leave a comment with the address if you would like to add it?

Thanks so much!

Kara

Are you on Facebook?

Join the March for Babies KC Family Teams - March of Dimes group and stay in touch!

Kick off your Memorial Day weekend with a celebration of wine and food for a great cause. Visit the Wine Fest website or call 913-469-3611 by 5 p.m. on Wednesday (May 20) to reserve your ticket for $50. Tickets may also be purchased for $60 at the door on May 21.

Wine + Food + Friends
In addition to more than 200 varieties of wines, Schlafly of St. Louis will satisfy beer connoisseurs. Restaurants generously donating their time and tastes in the Wine Fest main event include 801 Chophouse, Blanc Burgers + Bottles, The Capital Grille, Hereford House, Pierpont’s, Vinino and Zest. Baby Cakes will also dish out delectable desserts!

Silent auction offers something for everyone
The 2009 Wine Fest silent auction is sure to impress! Be sure to bid on the 140+ great items, including a spot in David Beckham’s soccer academy in Los Angeles, tickets to The Ellen DeGeneres (including air fare), David Letterman and Dr. Phil shows, and of course, premier wine packages!

Your donation benefits all babies
Wine Fest proceeds benefit the March of Dimes mission to improve the health of babies by preventing birth defects, premature birth and infant mortality. We carry out this mission through research, community services, education and advocacy to save babies' lives.

Thank you for supporting the March of Dimes. See you on May 21!

March for Babies is Sunday May 3!

Where should I park? There are 3 parking garages available at no charge as well as the metered parking on the street. KC Power & Light District Garage - entrance is located on 13th St. between Grand and Walnut. Entrance is on the left. H&R Block Garage- entrance on Main between 13th & 14th and on Walnut between 13th & 14th Cosentino's and Midland Theater Garage - entrance on Main between 12th & 13th and on Walnut between 12th & 13th

Town Pavilion Garage will be available for overflow parking but will be charging $5 per car to park on May 3.

Is there a registration fee? We recommend participants over the age of 13 years sign up and either donate or fundraise $25 or more. If you have not yet registered at http://www.marchforbabies.org, there will be 2 registration tents there Sunday morning and you can sign up and turn money in there!

Where is a good place to tell my family team to meet? Wherever is convenient for you - a suggestion would be the Family Team tent.

Where is the Family Team Tent? On Grand Boulevard in front of the Sprint Center.

Where is the breakfast area? Breakfast (and coffee!) can be found on Grand Street in front of the Sprint Center.

Where and when will lunch be served? Lunch will be served on Grand Boulevard in front of the Sprint Center in the same location as breakfast immediately following the walk.

Where are the restrooms? There will be porta potties located throughout the Power & Light District. There are also restrooms in the Live Block outside of Tengo Sed Cantina.

Where is opening ceremonies/ Radio Disney performing? All of these will take place on the stage located inside the KC Live! Block.

When does the walk start? The registration tents will be open at 8 am. Opening ceremonies start at 9:30 and the walk will kick off at 10 am.

How do I get a T-shirt? Participants who raise $200 or more will receive a t-shirt voucher upon registration. The voucher can be redeemed for a t-shirt inside the KC Live block at the T-shirt tent.

Where can I find water? There will be tubs filled with water bottles throughout the Power & Light District.

Where does the walk start? The walk will begin at the intersection of Walnut & East Truman Road.

How long is the walk? The walk will be 1 or 3 miles. Your choice! Both walks begin at the same location.

Are dogs allowed? Well behaved dogs on leashes are welcome to participate. The owners are responsible for picking up for the dogs if nature calls and the dogs will not be allowed near the food tents.

Is there a "rain out" plan? March for Babies will take place "rain or shine" as long as it is safe for our dedicated participants.

Tweet for a cause!

Got this from the March for Babies blog.

Hugh Jackman, who tweets as @RealHughJackman, has offered to give $100,000 to the charity of choice of the tweeter he feels makes the strongest, most heart-felt case. In 140 words or less that is.

Thousands of people have already sent their tweets - among them many March of Dimes supporters. Thanks, everyone! Hugh’s announcing the winner on April 24, so get your tweet in now! Tell Hugh and everyone else why this cause means so much to you!
Looking good and doing good… Hugh Jackman certainly is the total package! Wondering what to Tweet? Here are some examples:@RealHughJackman Every waking moment I have with my babies I’m thankful for March of Dimes research. We need your support to save more babies.@RealHughJackman My kids walk, run, laugh and play thanks to March of Dimes efforts! We need your to help give every baby a healthy start.

Lobby Day in Topeka

First, we had a great luncheon with several of our Kansas legislators! It was great to get to talk to some of these officials one-on-one!Then, we all headed over to the Kansas State Capitol Building to deliver information to the rest of our senators and representatives who weren't able to make the luncheon. If you've never been lobbying before - it is an AWESOME experience. I would encourage you if you ever have a chance in the future to take part in a local or national lobby day.

Okay - so probably took too many pictures of the actual capitol building - but it is so gorgeous!!

Before we left, we got to visit the actual senate session.Here we are waiting for it to start.After they called the senate to order, they recognized the March of Dimes in attendance!

Very fun day! More than that, it feels so good to know that we had small small part in the process of getting the March of Dimes' mission brought to light with our state representatives.