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.
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!
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
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
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.
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
• 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.
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
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
And, they walk to show the world that although small, they are mighty.
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
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
EDUCATIONAL – it should look at three main areas of your child’s life:
the general education curriculum, extracurricular activities and nonacademic
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
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.
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.
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.
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
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
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.
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.