Why We Walk Wednesday: Team Callie May

After trying to get pregnant and suffering two miscarriages, we were elated to make it to the “safe” part of our pregnancy. At 20 weeks, we found out we were having a healthy, little girl and began announcing to the world that we would be having a baby on May 31, 2009.  Three weeks later, I was placed on complete bed rest, upside down doing everything humanly possible to keep my baby put. 

On February 13, 2009, despite everyone’s best efforts, Callie entered the world. She was born limp and didn’t cry. She weighed only 1 pound 5 ounces. They held her up to us for an instant before rushing her to the NICU. An hour later, they came and got us, saying that they wanted to give us a chance to see her alive and didn’t think that she would make it until morning. Devastated, we went to her side and told her how much we loved her and how proud of her we were and asked her to fight.  

Fight she did. Callie spent the next three months in three different NICUs. She had four surgeries -- all before coming home. We were told her chances of ever walking or living a normal life was slim because of the severity of her brain bleed. Our little fighter showed the world statistics didn’t matter.

Now a healthy 4-year-old, Callie continues to exceed everyone’s expectation -- keeping up with the other kids in preschool, swimming and gymnastics.  

The March of Dimes means hope. It means hope that one day all babies can be born healthy. Hope that these innocent babies will not have to struggle as hard to meet milestones. Hope that mother’s won’t have to watch their babies struggle for life. It is hope for the future.

Get ready to WALK!

Get ready to MARCH!

It’s the exciting countdown to March for Babies! Our hearts are full, our spirits are high and our will is stronger than ever to march on to help ALL babies. Grab your t-shirts and sneakers and check out these last-minute reminders:

Reach out again to potential donors – send one of our new eCards! Or post on Facebook and make sure to include the link to your personal fundraising page to make it even easier. They will receive a thank-you and tax receipt.

If you raised money online, print your personalized sponsor form from your personal page and bring it to your walk, along with your cash and checks.

If you raised all your money offline, download and fill out a blank sponsor form to record your fundraising efforts.

Contact your local March of Dimes chapter if you have any last-minute questions.

This will be a day like no other.
A day when we stand together in the fight to help babies have the healthiest start possible!

Ready… set… MARCH ON!

Tags: march for babies 2014, March for Babies day, Online Fundraising

 

March for Babies Day Checklist!

With March for Babies in less than week, it’s time to get ready for the big day!

Before March for Babies:
Pack the essentials – fully charged cell phone, your team contact list (with phone numbers), team T-shirts and Band-Aids. Be sure to check the weather and back needed supplies based on the forecast (raincoat, umbrella, sunscreen, etc.)

Send a reminder to your team about the big day, including when and where you will meet at March for Babies, the forecast and needed weather supplies, and, of course, thanking them for their hard work. Planning celebrate your success following March for Babies? Be sure to include that in your reminder as well.

Looking for an opportunity to boost Team Spirit? Host a t-shirt and/or sign making party (perhaps at your next Team Meeting or after school) and, as a team, create signs and shirts for March for Babies. This is a great way to build excitement for the big day as well as promote your team’s success at March for Babies!

Following March for Babies:
Thank everyone who helped! Send letters, emails or visit those who donated in person, thanking them for their support. Be sure to let them know how much was raised and how important their efforts were. Encourage your team members to do the same!

Did a local business support your team? Give them an extra boost by thanking them personally and through social media (Facebook, Twitter, etc.).

Celebrate your success! Post photos of you and your team at March for Babies, along with your final fundraising totals, online, in class and throughout school. With administrative approval, ask to announce your success during morning announcements. Celebrate team members and top fundraisers with a picnic or party.

Have a great March for Babies and be sure to share your success and team photos with Team Youth on Facebook, on Twitter (#marchforbabies; #teamyouth), and/or by emailing teamyouth@marchofdimes.com.

Tags: Day of, Team Spirit, Team Youth

Help the March of Dimes Win $10,000

Please help the March of Dimes Maryland-National Capital Area Chapter win $10,000 in WTOP's Click For A Cause contest. It will just a take moment to vote for us. Just...

1. Log into Facebook www.facebook.com 
2. Visit http://bit.ly/wtopcontestMOD  
3. Click the Facebook "Like" image
4. Share this blog post to your friends and family

The contest ends this Friday at 5pm ET and every click counts. Thank you!

Why We Walk Wednesday: Team KINGston!

On December 6, 2011, Kingston Malone McKinnon was born weighing 1 pound, 3.5 ounces and 12 inches. He was considered a micro-preemie, born at 23 weeks and 6 days.

Life in the NICU became an unpredictable ride with a lot of ups and downs, heartaches and triumphs. During his NICU stay, Kingston had many procedures including, over 15 blood transfusions. On May 10, 2012, he was welcomed home -- in time for Mother’s Day! He had already spent numerous holidays in the hospital where he spent 5 months, 22 weeks or 145 days.

As the 2014 March for Babies Greater Baltimore Ambassador Family, the McKinnons shared their touching story at the March for Babies kickoff in Baltimore. Photos can be viewed at: http://on.fb.me/MFB14BmoreKO. 

Mom, Arica shared, “We're grateful for the role the March of Dimes played in helping Kingston, and we invite everyone to join us and walk so other families can be spared from the heartbreaking experience of having a baby born too soon or too sick.”

The family will speak during the opening ceremonies of March for Babies at Camden Yards on May 3. We look forward to seeing if this well-dressed toddler will be wearing a crown or an Orioles hat! 

Children's Clothing Swap & Silent Auction Fundraiser

C-sections, scheduling births and why healthy babies are worth the wait

We’ve written a lot of posts about labor and, that if your pregnancy is healthy, it’s best to wait for labor to begin on its own. We’re glad that more moms know that having a healthy baby is worth the wait. But sometimes, it doesn’t hurt to have a reminder – not just for moms-to-be, but for everyone.

Both of my babies were late, especially my son. (He’s a true mama’s boy and I sometimes get the feeling that he would climb back in if he could!) I remember all of the frustration and discomfort I felt as I reached and went past my due date. But as uncomfortable as those last weeks were, it was a small sacrifice to make for my baby’s health.

If there are no medical reasons for either you or your baby to have a c-section or schedule your baby’s birth, then it’s best to wait for labor to begin on its own. And unless you have a medical reason for having a c-section, it’s best to have your baby through vaginal birth.

A c-section is major surgery that takes longer to recover from than a vaginal birth. And you’re more likely to have complications from a c-section than from a vaginal birth. A c-section can cause problems for your baby, too. Babies born by c-section may have more breathing and other medical problems than babies born by vaginal birth.

All this is to say that if your pregnancy is healthy and you’re thinking about scheduling your baby’s birth, consider the risks. And even though those last weeks can be very uncomfortable, your baby’s health is worth the wait.

Tags: C-section, c-section by request, Healthy Babies Are Worth the Wait, inducing labor, induction, scheduling birth, scheduling labor induction, vaginal birth

 

Updated guidelines for water birth

Water birth is the process of giving birth in a tub of warm water.  A few weeks ago the American College of Obstetricians and Gynecologists (ACOG) and the American Academy of Pediatrics (AAP) released a joint committee opinion regarding laboring and delivering in water. In it they state that “Undergoing the early stages of labor in a birthing pool may offer some advantages to pregnant women. However, underwater delivery has no proven benefit to women or babies and may even pose a risk of serious health problems for the newborn.”

It is important to understand that the committee does make a distinction between laboring in water and delivering in water.  They acknowledge that there may be some benefits to being in the water during the early stages of labor. For women who have uncomplicated pregnancies, laboring in water may result in decreased pain, reduced use of anesthesia, and shorter labors. However there is no evidence that immersion in water during the first stage of labor otherwise improves perinatal outcomes. And being immersed in water during the first stage of labor should not prevent appropriate maternal and fetal monitoring.

However, the committee did express concerns about a woman actually delivering her baby in water. They found that “the safety and efficacy of immersion in water during the second stage of labor [delivery] have not been established, and immersion in water during the second stage of labor has not been associated with maternal or fetal benefit.”

After reviewing studies on water births they found a risk of severe complications in the newborn, including
•    maternal and neonatal infections, particularly with ruptured membranes;
•    difficulties in newborn temperature regulation;
•    umbilical cord rupture while the newborn infant is lifted or maneuvered through and from the underwater pool at delivery, which leads to serious hemorrhage and shock; and
•    respiratory distress that results from tub-water aspiration (drowning or near drowning).

While these complications of water birth may be rare, they are very serious. Until more thorough studies are done and the benefits of delivering in water to both mother and baby have been proven, both ACOG and AAP suggest that deliveries in water should be done in a research setting with mothers being fully informed about the potential risks and benefits.

Tags: labor and delivery, water birth

 

Why We Walk Wednesday: Lucky Luke

A year and a half ago, the Hemmila family's world was changed forever when a precious little boy decided to come into this world nine weeks early.  

After a whirlwind of a delivery, they were the proud parents of a baby boy, Luke Alexander, weighing 4 pounds 6 ounces and 17 inches long. Luke spent a total of 29 days in the NICU, but he came home without any major health issues.

His family has encountered some challenges though, such as Luke having to wear a helmet for a few months, getting the croup in his first spring and a heart murmur they have to keep an eye on due to a slow developing heart. His mom shared that overall Luke is now a healthy, happy, crazy little boy. 

Without the help of the March of Dimes (their research, their medical advances, their resources, etc.), they feel that their story would be very different.

They walk to remember this and to remember those who aren't as lucky as “Lucky Luke.” 

They walk to show people that these babies are amazing and strong from the moment they arrive. 

They walk to show parents that they aren’t alone in this battle. 

And, they walk to show the world that although small, they are mighty. 

IEP reviews in April

If your child has a disability and has an IEP, you may already know that April is usually the month when mandatory yearly reviews and IEP updates happen.

An IEP is short for Individualized Education Program. It is both a process and a written educational plan for a child with a disability,  age 3 and older. It is a document that lists all of the educational services that your child will receive, if he qualifies. Here is a quick review and resources to help you with the process. (See prior posts, for info on IFSPs for babies and toddlers.)

The IEP is:

INDIVIDUALIZED – specific for your child’s needs. It is not one size fits all.

EDUCATIONAL – it should look at three main areas of your child’s life:  the general education curriculum, extracurricular activities and nonacademic activities.

A PROGRAM or PLAN – all of the services your child will receive are laid out and detailed in writing.

What’s in an IEP?

The IEP may include special education, related services and/or supplementary aids and services. The IEP is first based on your child’s “present levels” which is a snapshot of your child’s function. In other words…what he is able to do now as compared to his non-disabled peers. Then, based on his present levels and his delay or disability, the IEP sets measurable annual goals.

The IEP should specify:

• Who will provide the service (eg. the speech therapist, regular ed teacher, special ed teacher, reading specialist, physical therapist, etc.).

• What kind of service will be provided, such as curriculum modifications or adaptations, the types of related services or aids- (eg. specialized reading curriculum, speech therapy etc.).

• Where the service will be implemented (eg. the regular ed classroom, playground, counselor’s office, etc.).

• When parents will receive reports on how well your child is doing. By law, you need to receive progress reports at least as often as children without disabilities. Often a school system will send home the IEP progress reports with Report Cards.

• When the goal will be achieved (eg. by the end of the marking period or by the end of the year).

• How the goal will be measured and how you will know the goal has been achieved (eg. a benchmark, such as a test score that shows if the goal has been reached).

Remember, an IEP is a living document that can be changed or updated by the IEP team, of which parents are members! It must be reviewed by the IEP team at least once a year, but it can be reviewed and updated more often if necessary.

Need more help?

A great place to go to understand your options and how to prepare for IEP meetings is on NICHCY’s website. In particular, you can find guidance on how an IEP team can write IEP goals. Keep in mind that NICHCY’s site will only be up until September 2014. Fortunately, you can find help by visiting your state’s Parent Training and Information Center (PTI), which is an information resource for parents of children with disabilities. Every state has at least one PTI. Each one has a different name. For example, one of the PTIs in California is named Matrix Parent Network and Resource Center while the PTI in New Hampshire is called the Parent Information Center. Whatever the actual name, each is commonly known as a PTI.

Some states also have Community Parent Resource Centers (CPRCs). CPRCs do the same work as the PTIs, but they focus on reaching underserved parents of children with disabilities, such as those living in a specific area in the state, those with low income, or those with limited English skills. Locate your state’s Centers  and read more about how PTIs and CPACs can help you.

You can also find excellent guidance on how to write IEP goals at Wrightslaw.

Lastly, review previous News Moms Need blog posts to zero in on where you need a refresher. Here is a Table of Contents of many prior posts, including several on IEPs.

Bottom line

April not only brings showers for May flowers; it is the month when most school systems begin reviewing and tweaking IEPs. With the resources in this post, you will be prepared and ready to play an active role in the process.

Note:  This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January 2013 and appears every Wednesday. Go to News Moms Need and click on “Help for your child” on the Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). We welcome your comments and input. If you have questions, please send them to AskUs@marchofdimes.com.

Tags: birth defect, child, CPAC, delays, disabilities, early intervention, IEP, PTI, resources, special education

 

Why We Walk Wednesday: The Turner Twins

This week, a mom of preemie girls shares why she will March for Babies. 

On October 9, I was transferred from Civista (now Charles Regional) to University of Maryland Hospital in Baltimore by helicopter. I was just 23 weeks pregnant and having contractions. After a few weeks of bed rest, my twin girls were born at 26 weeks, 4 days. Abigail weighed 1 pound, 11 ounces. Elizabeth was 2 pounds, 4 ounces. They were micro preemies struggling to survive. 

At two weeks old, my husband and I got the horrible news that both girls had severe brain bleeds shortly after birth. It took my breath away, and I cried for a full day. All that the doctors could say about this devastating news was that we just had to give it time to see what damage it had caused. 

Abigail and Elizabeth were then transferred to Johns Hopkins to be followed by the Neuro team there. Abigail was transferred first, followed by Elizabeth two weeks later. I went back and forth between the two hospitals during those two weeks. It was a nightmare. 

During their 125 day NICU stay the girls suffered through numerous tests, labs, X-rays, MRI scans, ultrasounds, blood transfusions and even surgeries. They had to learn to breathe without being intubated, and they had to learn how to eat. Abigail came home with the assistance of oxygen and with a GTube. Elizabeth came home a few weeks later. My daughters had to fight to live, and they are amazing fighters. 

After four months in the NICU and three different hospital stays, I am happy to say the girls are now 15 months old and doing well. They love to look at books, play and dance. Each week, they receive physical and occupational therapy. They see numerous doctors and specialists, each for different reasons, but most importantly their doctors are pleased. There is no life like NICU life. It truly is a roller coaster. Every day you have no idea what is ahead of you. Your life stands still and time moves slowly.

I am thankful for all that the March of Dimes does for babies. My girls were so sick and small, and I know they are doing well today because of the amazing teams of doctors they had and because of the dedication and research funded by the March of Dimes.  

Why do I walk? I walk for my beautiful twin girls that were born at 26 weeks old and all the other babies born way too early. I also walk to support other parents of preemies, who know what it's like to ride on the horrific roller coaster that is the NICU.  

Abby and Brooke

Brett and I couldn't have been more excited when we learned we were finally expecting! It took us a while to even become pregnant, so when we found out we were having twins we were beside ourselves, jumping up and down happy. Our prayers were answered. Our fur-kid would have siblings! Our wonderful parents would be grandparents and these babies would have the best aunts and uncles! How lucky were we?! Lucky and scared beyond belief that we would be responsible for not one, but two tiny humans!

I had no idea that celebrating the "new year" would turn out to be such a nightmare. How is it that the best, most magical days of your life can equally be the unimaginable, incomprehensible, worst? My beautiful twin daughters' births were incredible. They made me a mom, something I've always dreamed about. I am a mom who didn't get to bring her babies home to the nursery in which they were supposed to be up all night. I am a mom who will live with missing pieces of her heart for the rest of her life, wondering who her children would have been.

In the evening on January 1, I just didn't feel right, so we called the doctor. When my water broke a couple hours after the call, we immediately headed for the hospital. I was in a panic and hysterical because deep down I knew the fate of this was not going to be the outcome I wanted, and so desperately desired. I had done everything right. I was just at the doctor three days ago, and had been seen every two weeks through my entire high-risk pregnancy. How could this be happening?

It was quite a roller coaster of emotions as my husband, family, and I realized I would not be leaving the hospital until the babies were delivered. We were all praying I could continue to keep the girls safe for a few more days, and best case, a few more weeks so I could get steroid shots to develop their lungs. I told myself miracles do happen, so this was my time for a miracle. I needed the miracle. I was closely monitored all day and had few contractions. They even let me order lunch because I was stable. This was a good sign. The glimmer of hope we all had was soon shattered. Everything changed about 3:30 pm.

Little did I know, our entire world was about to be blown to pieces. I delivered my baby girls at 20 weeks.

Our first daughter, Abigail Jean, was born about 8 pm January 2, 2014.

Abby had her thumb immediately up by her sweet little mouth, she looked just like my husband. Brooklyn Marie was born the next morning and let out a little cry as she entered this world. She was my mini-me. I had no idea that even at that little I could see perfectly, who resembled who. Abby weighed 9.7 ounces and Brooke weighed 9.4 ounces. The time we spent with both girls was amazing. We were happy parents. Even through the tears, I will never forget the overwhelming joy I had seeing Brett hold and love our girls. I had no idea how it would feel to hold our very own baby for the first, and what would be last time. As any parent knows, holding your newborn for the first time is something words cannot describe. Believe me, I tried and nothing sounded right, so I'll just leave it at magical. I believe in magic. Both Abby and Brooke were held in our arms and showered with love until their tiny hearts stopped beating. The girls were perfect.

Perfect fingers, toes, ears, arms, legs and button noses. These little angels just needed more time to grow.

I often think how in the world could this be our life. I feel robbed.

I feel like someone ripped out my heart. This "new normal" sucks. This unimaginable pain of losing a child is more than most people experience in a life time, and my husband, family, and I experienced it twice, in two days. I hate every second but the girls send me signs when they know I need them the most. The signs come in many forms, one of my favorites is when the girls paint the sky in the brightest and prettiest pink and purple that I've ever seen. Sunsets are my favorite because it signifies I've made it one more day without my girls. Each sunrise holds more promise and each sunset holds more peace.

Despite all of the sad feelings, I know that these two special little girls were meant to help us change the world and to help other babies have a fighting chance at life. The girls showed me that miracles and magic are indeed very real. They are our miracles. Abigail and Brooklyn knew nothing but unconditional love their entire lives! Not a day goes by that I don't think about both of them. I love my girls so much and miss them dearly. I am a mom, even though my daughters have angel wings. More importantly, I am so happy to be their mom. I am the proud twin mommy of Abby and Brooke and will be walking in the March for Babies.

"Eyes closed, we're gonna spin through the stars." -DMB

Why We Walk Wednesday: Rylan’s Rollers

This year, we welcome a new family team to the Maryland-National Capital Area. A Mom’s LIFE (Living in Faith Everyday) mommy group will join us in support of March for Babies in Prince William County on April 27. They will make the 4 mile walk in memory of Mason and in honor of Rylan -- twin boys born on September 24, 2013, almost three months premature.

Mason and Rylan’s mother, Michelle, suffered an infection that quickly took over her entire body. When one twin was exposed to the infection, both boys had to be delivered via emergency C-section. Weighing less than 3 pounds each and just over 15 inches long, Mason and Rylan were placed on ventilators and given blood pressure medications, antibiotics and multiple blood transfusions. Their mother could not hold or touch them as the tiny babies lay helpless in their incubators. Mason fought bleeding and other complications of the infection. 

After 10 days Michelle and Rylan said goodbye to their little fighter, and he is now their angel baby. Rylan was a trooper and came home after 54 days in the NICU. Rylan is now almost seven months old and thriving!

Michelle and Rylan feel forever in debt to the NICU nurses and neonatologists who were simply amazing. To give back, Michelle, her son Rylan and others will walk together as “Rylan’s Rollers” at March for Babies. They also planned the following fundraiser and hope to see you next Tuesday in Manassas.