News Moms Need

If your baby is in the NICU, kangaroo care can seem like a life saver. Kangaroo care is a way to hold your baby so that there is as much skin contact between you and your baby as possible. It has wonderful benefits for both you and your baby.

For kangaroo care, your baby is placed upright on your bare chest.
• Ask the nurse for a warm blanket to cover you and your baby.
• Strong smells like perfume or cigarette smoke on you or your clothing can bother your baby, so be sure to wash before holding.
• Hold your baby for at least an hour in this position. Be sure to go to the bathroom and put your phone away before getting comfortable. Your baby needs your full attention.

Gentle, still touch is very important, especially for the most sick and fragile of babies. It might make you feel good to stroke your baby, but it doesn’t feel good to your baby in the NICU. Stroking can make a baby feel uneasy or uncomfortable. Touching without moving your hands is best.

Kangaroo care is good for your baby because it can:
• Keep your baby warm
• Stabilize your baby’s heart rate
• Help your baby gain weight
• Comfort your baby

It’s good for Mom and Dad too because:
• It can help you bond with your baby.
• It can stimulate a mother’s ability to make breast milk.
• It can reduce your stress and lift your spirits.
• It may help you become more confident parents.

Kangaroo care is safe and beneficial, even if your baby is connected to machines. Whatever your situation, kangaroo care is a precious way to be close to your baby. You will cherish this time. You can learn more about kangaroo care by looking at our Power Point presentation at this link.

This week, April 21-27, is National Volunteer Week and we want to give an enormous shout out to all our wonderful volunteers. These are the extraordinary folks who make this organization great.

More than 3 million volunteers enable the March of Dimes to achieve its goals. Every year, these leaders march more than 5 million miles, speak to tens of thousands of people about the mission and help raise millions of dollars. From the very earliest days, volunteers have been full partners in the March of Dimes, working to raise funds, heighten awareness and implement critical programs to help support our mission.

This diverse group of volunteers, led by a local volunteer leadership of approximately 3,000 chapter and division board members, brings knowledge, business experience and passion to ensure the March of Dimes is the leading nonprofit organization for pregnancy and baby health.  We celebrate their leadership and that of our corporate partners and national service partners! We also have bright and energetic youth councils working in high schools and colleges. We have had celebrity volunteers from the early years (Eddie Cantor, Marilyn Monroe, Elvis Presley…) to today’s hot tickets like Pink, Dee Snider, and Thalia!

With the support of these exceptional, high-impact volunteers, the March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality.

Thank you all so, SO much for what you do during this special week and all throughout the year!

Some infections can harm you and your baby during pregnancy. This is why vaccinations are so important. They help protect your body from infection, and you pass this protection to your baby during pregnancy. This helps keep your baby safe during the first few months of life until he gets his own vaccinations. 

Vaccinations also protect you from getting a serious disease that could affect future pregnancies. You probably got vaccinations as a child, but they don’t all protect you for your whole life. Over time, some childhood vaccinations stop working, so you may need what’s called a booster shot as an adult. Plus, there may be new vaccines that weren’t available when you were young, like the flu vaccine, recommended each year, or the Tdap vaccine that is recommended during each pregnancy. Talk to your health care provider to make sure all your vaccinations are up to date.

Not all vaccinations are safe to get during pregnancy. Here’s a link to a chart to help you know when you can get certain vaccinations if you need them. It includes the latest recommendations from the U.S. Department of Health and Human Services and from the CDC. Talk to your health care provider about vaccinations you need before, during or after pregnancy.

Most of us have heard that Halle Berry is pregnant at the age of 46. Wow, you go girl!  And did you see the recent episode of Call the Midwife where a first-time pregnant woman (a twin) in her 40s gave birth to twins of her own? Some women are asking us “If they can, why can’t I?”  Good question, complicated answer. 

Women over age 35 may be less fertile than younger women because they tend to ovulate (release an egg from the ovaries) less frequently. Certain health conditions that are more common in this age group also may interfere with conception. These include endometriosis, blocked fallopian tubes and fibroids.

If you are over 35 and haven’t conceived after 6 months of trying, make an appointment to see your health care provider. Studies suggest that about one-third of women between 35 and 39 and about half of those over age 40 have fertility problems.  At age 47, most babies are conceived with some form of fertility treatment.  This can be time consuming and expensive and there is no guarantee the treatment will work.

Most miscarriages occur in the first trimester for women of all ages, but the risk of miscarriage increases with age. Studies suggest that about 10 percent of recognized pregnancies for women in their 20s end in miscarriage. The risk rises to about 35 percent at ages 40 to 44 and more than 50 percent by age 45. The age-related increased risk of miscarriage is caused, at least in part, by increases in chromosomal abnormalities. 

The good news is that women in their late 30s and 40s are very likely to have a healthy baby. However, they may face more complications along the way than younger women. Some complications that are more common in women over 35 include: gestational diabetes, high blood pressure, placental problems, premature birth, stillbirth.  About 47% of women over age 40 give birth via cesarean section. You can see why it’s so important to keep all appointments with your health care provider.

All these things taken into consideration, many women who do conceive in their late 40s, either on their own (unlikely but not impossible) or with some fertility treatment, do manage to have healthy babies.  The important thing to remember is to have a preconception checkup and early and regular prenatal care. Know the signs of preterm labor, and give your doc or midwife a call whenever you have a question or concern.

Whether your child has a medical condition, disability, receives services through the Early Intervention Program or Special Education, one of the best things you can do is to keep all of your child’s records well organized. 

Why is this so important?

If your child is in the early intervention program for babies and toddlers or if he is receiving services through your local school system, you will find that you will amass an enormous amount of paperwork. Keeping it organized will help you tremendously when you need to find documents for IFSP or IEP meetings, visits with other doctors or specialists, and if you need to apply for other programs or services. It is very important that you keep all evaluations and test results so that future specialists can see the history of your child when he evaluates him. Having orderly records will also help you if you need to speak with an attorney in an attempt to try to obtain services you feel your child should rightfully receive.

How should you get organized?

My favorite way to do this is to get an old fashioned three ring binder and put each item in it in chronological order (date order). Put the oldest one on top and the newest one at the bottom (so it reads like a book). You are going to need more than one binder as your child grows, and each one can be labeled a different year (2013, 2014, etc.). This binder method will allow you or your child’s doctors to review your child’s history in a beginning-to-end format. It will also give you a “big picture” of your child, and help you put the details of all the different moving parts into one coherent whole.

What should you put in the binder?

Put everything that is related to your child’s health, disability and education in the binder. This would include:

• Medical records – beginning with your child’s birth (and even your pregnancy if it is applicable or if you have it)
    • All evaluation reports
    • Your child’s ISFPs and/or IEPs
    • Report cards
    • Educational test results (such as standardized tests)
    • Your notes from meetings or phone calls with school personnel, doctors, or other individuals, with dates
    • Notes from your child’s teacher
    • Samples of your child’s work
    • The business cards of all of your child’s doctors. You can either put them in plastic business card holders, or create a master list of all the doctors with their contact info.
    • CDs or thumb drives of electronic information that is on your computer (always back up files!)
    • A list of all the medications your child is taking, with the dosage, frequency and prescribing doctor.

Some experts say that it is also helpful to create a one page summary sheet, which is almost like a table of contents. It should list each document, the date the document was created or received, and a brief description of what it is (eg. “John’s neurological evaluation, 2009,” “IEP for 5th grade,” “notes from team meeting on January 12, 2011,” etc.).  This will help you to locate valuable information when you need it quickly (such as right before a meeting or a visit to a new doctor). The more organized you are, the easier it will be to manage your child’s journey.

Some people don’t like the binder method. If you find this does not work for you, then you might find it easier to put all of the above items in a file cabinet (in file folders) in chronological order. Whichever method you choose, just be consistent and label your folders so that you can find things when you need them.

When should you stop keeping these files and records?

Besides needing these records for early intervention or school based services, you may need these records for the high school years and beyond graduation. For example, you may need these records in order for your child to qualify for accommodations for college based entrance exams, such as the SAT or ACT. You will also need these records to support a request for testing accommodations at college. Lastly, many of these records will be required to apply for government benefits, such as Supplemental Security Income (SSI).  So, I suggest that you keep your file system going for as long as your child (or later as an adult) has special needs.
 
Where can you get more help with this?

I often recommend that parents go to the NICHCY website as they have a Sample Record-Keeping Worksheet as well as a description of all of the various kinds of info that you should include in your binder  on page 15.

In addition to NICHCY, you can also go to Wrightslaw, an extensive website dedicated to helping parents navigate the maze of special education.  They offer concrete advice on how to advocate for your child with special needs. They also have great articles on how to organize your child’s records.  

Bottom line

If you begin your record keeping early, you will not be overwhelmed by the avalanche of papers that will undoubtedly come your way. But, if you did not have a method of record keeping before today, don’t worry. Simply start with today and you can go back and organize prior paperwork another time. Being organized will cut down on the stress that occurs when you feel like you are buried beneath a mountain of paper. You have enough to tend to with your child – it is helpful if the paperwork does not get in your way but rather helps you achieve your goals. Of course, the best part of all is that you will feel more confident and in control of your journey.

Let me know if this helps or if you have other suggestions. What has worked for you?

Have questions?  Send them to AskUs@marchofdimes.com.

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It appears every Wednesday, and was started on January 16, 2013. Feel free to go back to look at prior posts as the series builds on itself. As always, we welcome your comments and input.

Do you suffer from head bangers? Were they worse or better during pregnancy? Some women find they get worse while others enjoy a reprieve. Some women may have migraine headaches for the 1st time in early pregnancy - often severe, throbbing pain on one side of head. What causes this?

Find out about triggers, what meds are safe and what should be avoided, what are some non-medical suggestions for relief.

Join us on Twitter Wednesday April 17th at 1 PM ET for our next pregnancy chat. Get some tips or share with your fellow sufferers what worked best for you. Be sure to use #pregnancychat to join in the conversation.

My daughter recently started her first job as an assistant teacher in a preschool center (Yay!)  One of the first things she learned was that she can’t bring any peanut butter sandwiches to eat for lunch (her favorite) due to children having peanut allergies. 

At first I was a bit surprised that she could not bring in a sandwich that contained peanut butter, knowing that she would never share her food with the kids, but when I stopped to think about it, it makes perfect sense.  In severe cases a child can have an allergic reaction from accidentally coming in contact with peanut butter.  So, it makes sense to ban peanuts from the school campus altogether, and protect anyone with a peanut allergy from a possible reaction. In many cases, a reaction can happen in seconds and become dire if medical intervention is not swift enough.  Why run the risk?

For parents who find that their children only eat a handful of foods, alternatives to peanut butter may include cream cheese, yogurt, cheese, lean deli meats such as turkey or chicken, and tuna fish. Be sure to put an ice pack in your tot’s lunch box if you are going to send foods that need refrigeration.

Since tots also like finger foods, it is wise to pack an assortment of items so your little one can pick and choose what he feels like eating that day. A variety of sliced fruits, crackers and carrots in addition to the items I previously mentioned provides a mini buffet.  Giving him choices will help your child to adapt to different food textures and tastes – something necessary to encourage his taste buds to grow and develop.  Although food allergies  may be a way of life for some children, it does not have to stop them from experiencing and tasting a variety of foods.

I am entertained every evening as my daughter recounts stories from her day with all the little ones. She is constantly amazed at how they grow and change so fast, right before her eyes. Something a child could not do one day is mastered a week later. By giving your little one a variety of healthy foods every day, he will soon like something that previously he never would touch!

Exciting news - our iPhone app CineMama is Parenting Magazine’s App of the Week! 

Cinemama is an iPhone app that lets you turn daily photos of your belly into a fun movie momento of your pregnancy. You can record memories and milestones in a diary while staying informed with weekly tips.

Track your growing belly with pictures organized by day and month in an easy to view calendar mode.  The more photos you take the better your movie will be. Customize it with titles and one of our soundtracks for a great effect. You can keep it private or share it with friends and family.

It’s cool, it’s fun, it’s free!  Check it out!

On April 8, 2013, the U.S. Food and Drug Administration approved the drug Diclegis (doxylamine succinate and pyridoxine hydrochloride) to treat pregnant women experiencing nausea and vomiting.

More than half of all pregnant women have some nausea during the first trimester. For most women this nausea usually goes away by the second trimester. But for some women, nausea and vomiting may continue even past the first 12 weeks of pregnancy.

Diclegis is a delayed-release tablet intended for women who have not adequately responded to conservative management of nausea and vomiting during pregnancy, such as changes to their diet and lifestyle. These modifications include eating several small meals instead of three large meals, eating bland foods that are low in fat and easy to digest and avoiding smells that can trigger nausea.

“Diclegis is now the only FDA-approved treatment for nausea and vomiting due to pregnancy, providing a therapeutic option for pregnant women seeking relief from these symptoms,” said Dr. Hylton V. Joffe of the FDA’s Center for Drug Evaluation and Research. Observational studies have shown that the combination of active ingredients in Diclegis does not pose an increased risk of harm to a developing fetus.

For questions and answers about how drugs are approved by the FDA, click on this link.

If you have a child receiving special education services, April is a very busy month. It is the time when meetings usually take place to discuss your child’s progress and create a plan for next year.  It means that your child’s Present Levels of Academic Achievement and Functional Performance (also known as PLAAFP) will be determined. This is your starting point. It provides baseline information about your child’s knowledge and skills. Then, the IEP team (of which parents are members) should work together to create a new IEP with updated goals and objectives.

How to develop a good IEP

Developing an IEP takes time and dedication. It also takes a team. You, your child’s teachers and any professional that works with your child (such as a speech therapist, counselor, etc.) should have input into creating the IEP.  NICHCY has a very clear factsheet that provides all of the details on how to create a good IEP.   

In addition, my other favorite website, Wrightslaw, has tons of info for parents to help you through the IEP process. In particular, I like their page on “SMART” IEPs . They say that IEPs should be:

S    Specific (specific goals and objectives describe behaviors and skills that will be taught)

M  Measurable (measurable goals and objectives to accurately assess your child’s progress)

A   Use Action Words (words that will actively describe the goal “Crissy will be able to…”)

R   Realistic and relevant (goals and objectives that address your child’s unique needs as a result of her disability)

T   Time-limited (progress is monitored in a defined way, at defined intervals)

Please read more from Wrightslaw about creating SMART IEP goals.   I also like their page on IEP FAQs. Be sure to scroll down the page for their IEP Tactics and Strategies section. 

I can’t stress enough how important it is to familiarize yourself with the information on these two websites. Knowledge is powerful and will help you to be a much better advocate for your child.

Negotiating tips
 
Lastly, when you are in the IEP meeting, try to remain cool and calm. This is not always an easy thing to do, but when you get all flustered, upset or annoyed, you can’t negotiate in a rational way. And, it puts the other team members on the defensive which may halt your progress. Try to stick to the facts (your child’s disabling condition and his present level of functioning as based on current evaluations), and then focus on the goals and objectives that you believe are important and within reach. 

If you have been through this process and wish to offer suggestions, we’d love to hear from you.

Have questions?  Send them to AskUs@marchofdimes.com.

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started on January 16, 2013 and appears every Wednesday. Feel free to go back to look at prior posts as the series builds on itself. As always, we welcome your comments and input.