Kingston’s Story

You often hear people say that being in the NICU is like being on a roller coaster ride. You’re always anxious and never know what to expect day to day.  Your emotions are all over the place, sometimes fluctuating hour by hour.  This is the life I experienced for roughly 4 months.   My NICU journey began on December 6, 2011, when I was told that I was going to have to have an emergency c-section since my little one was breeched and that this would be the safest way to deliver a baby so tiny.  Little did I know how tiny he would really be.   Kingston Malone McKinnon was born at 2:16pm, weighing 1lb 3.5oz (545 grams) and 12 inches.  He was considered to be a micro-preemie being born at 23 weeks and 6 days at such a small size.

After being resuscitated twice at birth, the first 4 weeks were very challenging and Kingston was very sick, struggling daily to breathe on his own. He was on various ventilators to assist him with breathing as well as, numerous medications, and bright florescent lights for his jaundice.  The doctors said that the two betamethasone shots administered within 48 hours of my delivery helped to save Kingston’s life.  At 4 weeks, he was transported to the ICU at John Hopkins to have a PDA ligation surgery. The surgery was successful and within 48 hours he was weaned off the mechanical ventilator. Over the next 2 months, life in the NICU became an unpredictable ride filled with a lot of ups and downs, heartaches and triumphs. 

During his stay in the NICU, Kingston had over 15 blood transfusions and multiple medical procedures.  He also had to be intubated and put back on the ventilator twice.  He did a second stint at Hopkins ICU where he was treated for a serious blood infection (sepsis) and his chronic lung disease.  He also had developed ROP (eye disease) which kept him in ICU since he needed special medication to administer his weekly eye exams.

Through it all, we were blessed that all of his test results (head ultrasound, hearing test, MRI, blood work, etc) came back normal. After a long 4 months, our little Kingston graduated from the NICU and moved to Mt. Washington Pediatric Hospital where he spent an additional 5 weeks growing and learning how to feed.

On Thursday, May 10, 2012 my wish finally came true. Kingston was going to be able to come home before Mother’s Day. What a great gift! After a long 5 months, 22 weeks, 145 days in the hospital, Kingston came home at a healthy 8lbs 11oz. As difficult as our journey may have been, we realize how much stronger it made us as parents. Every day we look at our little miracle baby and feel tremendously blessed to have survived such an experience!

A Holiday Gift of Health

Whether you’re young or old, help give the gift of good health by getting vaccinated against pertussis. New parents should ask grandparents eager to hold the new baby in the family to add vaccines to their holiday shopping list.

A nationwide surge in whooping cough infections has major health organizations urging people to step up and keep up with their vaccines. Did you know that adults are the most common source of pertussis infection in infants? As a grandparent, I’m paying attention to the recommendations from the American Academy of Pediatrics and the CDC regarding the pertussis vaccine.

A recent pertussis study immunizing a mother in the last trimester of pregnancy showed that the immunization did not lower the rate of pertussis in infants younger than 6 months. Experts are recommending “cocooning,” a strategy that protects infants who are too young to be immunized, by having parents, brothers and sisters, and caretakers vaccinated against this disease. This includes grandparents, too.

Advisers to the Centers for Disease Control and Prevention have expanded an earlier recommendation that seniors be vaccinated against whooping cough (pertussis). They now recommend that all adults 65 and older, not just those caring for infants, be immunized. If you don’t think you’re going to be around little ones this holiday, think again. You may attend a holiday party where there are lots of tots. It’s important to remember that pertussis isn’t picky. If your booster isn’t up to date, you can get pertussis, too. Let’s not share this disease any more.

So if you’re asked what you want for a holiday gift this year, ask that everyone get their pertussis vaccination.

Your Support Helps Babies

Thanks to you, the March of Dimes has touched the lives of thousands in the Maryland and National Capital Area in 2012. You can see our efforts every day, right in your own community.

When the March of Dimes began nearly 75 years ago, the community donated dimes. Today, it takes more than dimes to do our work to improve the health of babies.  Times are hard, but we are hoping that you might help one more time in 2012 by making a tax-deductible donation.

Your year-end, tax-deductible gift is extremely important to the March of Dimes because it funds important research and programs that help babies begin healthy lives. Please consider making as generous a contribution as you can. Here is how your donation at the following levels can make a difference:

$500 

• Provide 68 sleep sack to babies in the NICU to reduce the risks of SIDS
• Purchase two Becoming a Mom Curriculum Books for one of the 8 chapter Stork’s Nests

$250

• Purchase 12 PREEMIES Books, a book for parents for the NICU libraries
• Provide 10 nurses with continuing education credits through our Nursing Modules

$100

• Provide 4 Memory Boxes for families who have lost a baby and corresponding written materials
• Purchase scrapbooking materials for the families in the NICU

$50

• Purchase 3 PREEMIES Books, a book for parents for the NICU libraries
• Provide 2 women with notebooks for their Centering Pregnancy (group prenatal care) classes

$10

• Purchase 10 Breastfeeding How-to–Guides for hospitals and clinics
• Provide one pregnancy test on the Mama & Baby Bus

Click here to donate to the March of Dimes.

Those who cannot give financially can still help MOD by voting for Miles:

Your Vote for March of Dimes Counts in United Airlines’ Annual 10 Million Mile Charity Giveaway

United will be donating 10 million MileagePlus miles among their participating charity partners – miles will be awarded based on the percentage of the overall vote each organization receives. Each partner will receive a minimum of 25,000 miles, but the more votes we get the more miles the March of Dimes will receive. Voting is open to the public, membership in MileagePlus is not required. Individuals may vote once per day for the duration of the campaign which will end on December 25. Miles will be awarded in January 2013.

 

Please

vote today and everyday between now and the 25^th, and be sure to spread the news - share on your Facebook page and Tweets

Healthy Mom, Healthy Baby

HealthyMom, Healthy Baby

Having a baby is one of nature's true blessings and miracles. You have many choices before you in this exciting time and the more you know, the more empowered you become!

Get the facts you need. Healthy Mom, Healthy Baby brought to you by March of Dimes clearly lays out all the must-know information about every stage of your pregnancy, along with research-based advice to help keep you healthy and full of energy.

Healthy Mom, Healthy Baby features:

• A straight-forward "Start Where You Are" approach to maternity
• A month-by-month look at how your baby is growing
• The truth about weight gain and nutrition
• The essential labor checklist

http://www.marchofdimes.com/book/healthy-mom-healthy-baby.html

A Special Delivery at Inova Fairfax Hospital

12/12/12 marked a milestone for Peg and Nick Brown. That was the day the couple delivered Peg’s 1,000^th granny-square Afghan blanket -- all which she personally crocheted -- to the NICU at INOVA Fairfax Children’s Hospital.

The Browns and INOVA Fairfax Children's Hospital staff

Peg’s dedication began in 2004 when she learned that some babies went home from the hospital wrapped in a towel because mothers could not afford anything. Something told her that babies needed a hug.

She began knitting booties and made over 300 pairs for the hospital. However, because they would quickly be outgrown, she switched to Afghans, which can be used and kept for years. Sometimes, the Afghans are also used as a bereavement remembrance.

Making Afghans for the NICU is a personal calling for Peg. It gives her great satisfaction to know that some needy families have babies going home wrapped in a brightly-colored, snuggly Afghan.

Peg continued to work and crochet while recovering from surgeries in both lungs and chemotherapy. Since her retirement, Peg made 200 Afghans each year -- equivalent to a full-time job. It takes 10 hours to make one Afghan (over 10,000 hours of work).

 Peg felt total sadness in July 2012, when shoulder and back pain prevented her from crocheting. Last September, she was diagnosed with Stage IV bone cancer. With radiation therapy for pain, she was able to complete the final 20 of her 1,000 Afghans in December.

On the delivery day, they received numerous thank yous, roses and the prestigious March of Dimes “Starfish Award.”  This award is usually given to staff that families feel have gone beyond the call of duty.  Peg and Nick are the first non-March of Dimes staff members to receive the starfish pin for truly making a difference.

Peg’s 1,000^th Afghan will be framed and hung in the NICU -- a keepsake for many!

 

 

Preemie Reauthorization Act passes the U.S. Senate

WASHINGTON, November 15, 2012 — The U.S. Senate tonight passed the PREEMIE Reauthorization Act (S.1440). The bipartisan legislation reauthorizes federal research, education and intervention activities related to preterm birth and infant mortality.

“The PREEMIE Reauthorization Act will save infants’ lives, “said Dr. Jennifer L. Howse, President of the March of Dimes. “Tonight the Senate took a vital step toward ensuring a healthy start for our nation’s infants. Renewal of the 2006 PREEMIE Act is a vital component of the March of Dimes’ comprehensive efforts to reduce the number of infant deaths and childhood disabilities caused by premature birth.

“Our efforts are bearing fruit,” Dr. Howse added. “Preterm birth rates have now dropped for five consecutive years after rising steadily for three decades. The PREEMIE Reauthorization Act will continue to fuel our progress by supporting federal research and promoting known interventions and community initiatives.

The original PREEMIE Act (P.L. 109-450) brought the first-ever national focus to prematurity prevention. The Surgeon General’s Conference on the Prevention of Preterm Birth required by the Act generated a public-private agenda to spur innovative research at the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) and support evidence-based interventions to prevent preterm birth. The PREEMIE Reauthorization Act reauthorizes critical federal research, education and intervention activities related to preterm birth and infant mortality.

Every day, one in eight infants is born premature in the United States. Preterm delivery can happen to any pregnant woman; in the majority of cases, the cause of preterm birth is unknown. Preterm birth is the leading cause of neonatal death, and those babies who survive are more likely to suffer from intellectual and physical disabilities. In addition to its human, emotional, and financial impact on families, preterm birth places a tremendous economic burden on the nation. A 2006 report by the Institute of Medicine found the cost associated with preterm birth in the United States was $26.2 billion annually, or $51,600 per infant born preterm. Employers, private insurers and individuals bear approximately half of the costs of health care for these infants, and another 40 percent is paid by Medicaid.

The March of Dimes is a national voluntary health agency whose volunteers and staff work to improve the health of infants and children by preventing birth defects, premature birth and infant mortality. Founded in 1938, the March of Dimes funds programs of research, community services, education and advocacy. For the latest resources and information, visit marchofdimes.com or nacersano.org

Nate Brown, March of Dimes, (202) 292-2755; nbrown@marchofdimes.com

Congratulations Reese!

Reese Witherspoon received the March of Dimes Grace Kelly Award at its Celebration of Babies luncheon Friday Dec. 7, 2012. http://wapo.st/11TYkbe

Worldwide Candle Lighting

Light a candle on Sunday December 9 in memory of all the babies and children who have died

 

March For Babies Family Teams

Why We Walk!

When you walk in March for Babies, you give hope to the more than half a million babies born too soon each year. The money you raise supports programs in your community that help moms have healthy, full-term pregnancies. And it funds research to find answers to the problems that threaten our babies. We’ve been walking since 1970 and have raised an incredible $2 billion to benefit all babies.

What to Expect!

This year, more than 7 million people will join their family, friends and colleagues in 900 communities across the nation. Our volunteers and staff will encourage and support you in your efforts to raise awareness and funds. No matter if this is your first year or your 25th, you can expect the event to be fun, compelling and rewarding.

The money you raise in March for Babies funds important research and programs that help babies begin healthy lives. Take a look at how you’ve already helped.

 

http://www.marchforbabies.org/default.aspx?si=

Register Online Now for March for Babies 2013

March for Babies 2013 is live on line!  You can register your Family Team for March for Babies 2013.  Visit marchforbabies.org and enter your username and password.  You will be able to update your team’s website by adding a new message or picture.  You may want to send a holiday message to friends and family now to ask for donations.  It’s the season of giving!  If you need help activating your website, please contact your March for Dimes staff liaison – we are happy to help!    

Also, make sure to mark your calendar for March for Babies 2013.

April 20^th

Allegany County

April 21^st

Harford County

Wicomico County

April 27^th
Prince George’s
Greater Baltimore
Washington County

April 28^th 
Caroline County
Frederick County
Prince William County
Montgomery County

May 4^th
Worcester County
Washington D.C.


May 5^th
Fairfax County
Southern Maryland
 
Happy Holidays from the March of Dimes Maryland-National Capital Area!

The Dream Team

A team approach

Premature birth is a complex problem that has defied simple solutions. In about half the cases of premature birth, the cause is unknown. That's why the March of Dimes is pioneering a new team approach to research, involving more than 135 scientists from many different disciplines.

At the March of Dimes Prematurity Research Center at Stanford University, a dream team of scientists is examining the problem from every angle to find the answers that have so far been out of reach. We look forward to reporting to you on our progress.

Above: David K. Stevenson, MD, principal investigator

White House Will Be Purple For Preemies

 

We've done it! Thanks to all of you, we've reached the our goal of 25,000 signatures on our petition to light the White House purple for preemies! What's next? All signers will receive an email response about the petition from the White House and we will post the White House response here as well. We deeply thank each and every single one of you for supporting us! By signing the petition, you are helping to support and raising awareness for preemies and their families all across the country! Thank you!

Isani

My first and only son Isani (pronounced ee-SAH-nee) was born 7 weeks premature on May 7, 2011. My water broke when I was 31 weeks pregnant. I was admitted to the hospital and spent an emotionally challenging 17 days there. Hospital bed rest was not the way I anticipated spending the last weeks of my pregnancy. One day I was at work and the next day I was in the Hospital, which meant no baby shower, no finishing the nursery, no wrapping things up before maternity leave – It was difficult.

My first day at the hospital, the NICU doctors visited me and shared all the possible things that could happen to my baby if I delivered early, including cerebral palsy, heart problems, Developmental delays, or sepsis infection causing death. I was so scared and overwhelmed. I immediately began researching my condition (Preterm Premature Rupture of Membrane or pPROM) to see what I could do to buy my sweet baby more time in the "oven." I also started reading about the wonderful advancements that have been made in improving the mortality rate and quality of life for premature babies. The March of Dimes website was a phenomenal resource for me during this time. It helped me to not panic and to stay informed about all the options
I had for my care and the care of my unborn baby.

We were thankful for each day that passed with me not going into labor. I was able to give my Isani 17 more days after which I caught an infection, as is common with women with pPROM.
I went into spontaneous labor, caught a fever, and had to have an emergency c-section. Within seconds of being born, my Isani was taken to the NICU. I barely got to see his precious little face. I was taken to recovery and it would be 12 hours before I saw my baby. My husband showed me pictures of him in the NICU, and my heart was heavy; he was so small, only 4 lbs. 9 oz., and the machines were so big. He had a CPAP machine on and IV lines to administer his antibiotics. Despite this visual, his prognosis was fair. He needed a little help breathing the first two days and he spent a few days with the bili lights for mild jaundice, but after three days of antibiotics there was no sign of infection.

Leaving my Isani at the NICU was the hardest thing I have ever done in my life. I missed him so much. The doctors did rounds every morning. When it was our turn, I was knowledgeable about the terms they were using and prepared with questions about the treatment and progress of my Isani in part thanks to the information, articles, and studies posted on the March of Dimes website.

I recognize that had my Isani been born 10 or 20 years ago our story could have been quite different. Due to studies and advancements in treating premature babies our story ends with us leaving the NICU after 13 days with a healthy baby boy. Isani is 10 months old. I am envious of his spirit and resiliency; he continues to motivate me to be the best mom I can be.

I am so excited about the opportunity to participant in March for Babies. I've done many walks and races before, including ones for Breast Cancer, Aids, and Leukemia with TNT. However, with these walks I didn't have the personal motivation of having someone so close to me who was affected by these diseases. March for Babies is different…please join me.

And so...I am walking for my Isani and the many memories that we will continue to make together as mother and child.

Share Your Story

"I'll never stop marveling at what she's accomplished so far."

We're getting back to the school routine — getting the kids up a little earlier, going shopping for supplies, and finishing those chores we planned to do earlier in the summer. As the parent of a preemie, there is always a little extra apprehension in my mind as school starts. 

I wonder what the year will bring. And I don't mean who my daughter's teacher will be or which friends will be in her class. It's what latent prematurity-based issues might crop up this year. Like many preemie parents I feel like I'm waiting for the next shoe to drop. I know all parents can worry about new experiences for our children, but for us there can be a real foundation for worry. I'm not sure I'll ever get past this, but I do know I'll never stop marveling at what she's accomplished so far. To read more stories like mine, or to share your own, please check out shareyourstory.org.

- Jackie

Join us for World Prematurity Day by going to ttp://www.facebook.com/WorldPrematurityDay  share your story today!

Report Cards Are Out!!

When I was going to school, my parents told me to work hard and bring home good grades.  I took that message to heart and did the best that I could and brought home a great report card for them to see.  Sometimes, I would get a grade that really needed improvement and my teachers and family would help.  When I did improve my grade, we all celebrated cautiously.  I always remembered that I could do better and set about to do just that.    I learned a lot from my reports and  use some of these same lessons  with my own kids.

Now for the improvement and celebrating!!

 The March of Dimes 2012 Premature Birth Report Card was released today! Grades are based on comparing each state’s and the nation’s 2011 preliminary preterm birth rates with the March of Dimes 2020 goal of 9.6 percent of all live births.  The United States gets a grade of “C” for the 11.7 % rate of premature births.  Although this is not the wished for “all As” it has been a steady improvement from 12.8% in 2006!

After I got my report card as a kid, I compared it with my friends.  We do that in the chapter as well as we have Maryland, Virginia and DC.  Sometimes I did better than my friends for many reasons and sometimes they did the same.  So here is how the report cards stack out in the three areas of the chapter.

Virginia lowered its preterm birth rate, which has always been lower than the national rate, to 11.2 percent. The commonwealth earned its first “B” grade. Although Maryland’s statistics decreased from 2009 to 2010 and its preterm birth rate declined to 12.5 percent, it was not enough to change its grade, which remains a, “C.” The District of Columbia’s rate improved to 13.7 percent but the change wasn’t enough to earn it a better grade, “D” on the annual Report Card.  Despite the continued improvement in prevention of preterm births, an estimated 460,000 babies were born preterm in the nation last year.

We’re proud to see preterm birth rates improving, thanks to the work of the March of Dimes and our partners. This progress means that more babies are being born healthy, excess health care costs are being reduced and families are being spared the heartache of having a baby born too soon,” said Robin Baker, M.D., a neonatologist with Fairfax Neonatal Associates and a local March of Dimes board member. “Although preterm birth rates improved in recent years, we must do more to ensure a healthy birth for all babies. Partnerships with health care providers and local hospitals have helped us make newborn health a priority and lowered our preterm birth rate, making a difference in babies’ lives.”

The March of Dimes attributed the improved rates to an expansion of successful programs and interventions, including actions by state health officials in Virginia, Maryland and, the District of Columbia.  In Maryland and the National Capital Area, March of Dimes programs such as centering pregnancy and the Mama & Baby Bus help women have full-term pregnancies and healthy babies. The nonprofit is also supporting hospitals efforts to end early elective deliveries. Additionally, the Association of State and Territorial Health Officials (ASTHO) and the March of Dimes adopted an interim goal of an eight percent reduction in the preterm birth rate by 2014.

Dr. Baker continued, “We will continue to work together to improve access to health care, help women quit smoking and through our Healthy Babies Are Worth the Wait consumer education campaign, encourage women and health care providers to avoid scheduling a delivery before 39 weeks of pregnancy unless medically necessary.”

 
So, we did not bring in all As, but we have allowed hundreds of families in the chapter to go home with their babies right after delivery.  A’s not yet!  Progress priceless!

Congratulations to our Heroines in Technology Finalist!

 

Heroines in Technology® gala recognizes and honors women in the technology community for their dedication to community service. Since its inception, Heroines in Technology has honored 67 “heroines” and raised more than $1.4 million to support the March of Dimes. The gala has attracted 350-400 guests in the past and the evening includes a cocktail reception, dinner and a silent and live auction. Guests include directors, CEOs and other high-level individuals from local corporations and government agencies.

Finalists will be recognized and winners announced in the following categories: Rising Heroine, Individual Heroine, Corporate Heroine, AFCEA International Government Heroine and Lifetime Achievement Heroine.  Presentation night: November 9, 2012 (winners will be announced).

The 2012 Heroines in Technology finalists:

·         Anne Altman, general manager, Global Public Sector, IBM Corporation

·         Crystal Cavalier, special assistant to the chief of staff, government agency

·         Sarah Chu, project coordinator, Society for Women’s Health Research

·         Belinda Coleman, president, The Coleman Group, Inc.

·         Lynn DeCourcey, vice president and general manager, Cyber Security, NJVC

·         Bev Godwin, Director, federal citizen information Center, government agency

·         Dawn Halfaker, president & chief executive officer, Halfaker & Associates, LLC

·         Kerry Hancock, business development manager, Convergence Technology Consulting

·         Lisa Kazor, chief executive officer & president, Savantage Solutions

·         Lynda Mann, vice president, Performance Solutions (AOC) and co-founder & president of the board (YouthQuest), AOC Solutions, Inc. and The YouthQuest Foundation

·         Sandy Peavy, assistant director/Chief information officer, government agency

·         Kristi Powlovich, senior information assurance analyst, US Army, PEO EIS

·         Lynette Spano, chief executive officer & president, SCI Consulting

·         Pamela Thornton, principal healthcare advisor, The MITRE Corporation

·         Amanda Tiede, vice president, Cassidy Turley

·         Alison Wittich, marketing strategy & analysis associate, Sapient

View Past HIT winners (PDF)

AFCEA NOVA is the event partner for Heroines in Technology. It is the largest chapter of AFCEA International, a nonprofit professional association that represents the top government, industry and military professionals in the fields of communications, electronics, intelligence, software, information systems, imaging and multi-media. Learn more about AFCEA membership.