Spending holidays in the NICU

19
Dec
Posted by Barbara

Parents in NICU If your baby is currently in the NICU, this may not be how you envisioned spending your holidays. The realization that your baby is not home for Hanukkah, Christmas or the start of the New Year can be a real jolt. But, with a little creativity, an open mind and a willingness to adapt, you can still make your holidays bright. Here’s how:

• Although no two NICUs are exactly alike, many will allow you to decorate your baby’s bed space (but ask first). You may be able to attach pictures or tiny holiday decorations on the side of the incubator or warmer bed.

• Engage your other children if you have them. You can take a photo of them and pin it up on the side of your baby’s bed (if allowed). Likewise, take a photo of your baby and bring it to your child or children at home to decorate. They can make a Christmas ornament out of it and hang it on the tree or draw a picture around it and set it up next to the menorah. This way, your littlest one is always present at your home in a physical way.

• If your baby is healthy enough, see if you can put him in a special holiday outfit. A snowman, Santa or elf onesie would be adorable! (But be sure to check with the head nurse or doctor first.)

• Depending on the health of your baby and NICU rules, perhaps Dad can pose as Santa and take a photo with your baby. (Be sure the Santa outfit is squeaky clean please!)

• Place a tiny “Charlie Brown” tree, menorah or other symbolic decoration on the windowsill or counter next to your baby.

• If appropriate, see if you can play soft holiday music when visiting your baby. Humming or singing to your baby may be soothing to him and in this way you can introduce him to his first Christmas Carol or Hanukkah song.

• Make a clay impression of your baby’s foot as a keepsake. There are kits that you can buy that are easy to prepare. Or, if you have a creative streak in you, you can make the “dough” yourself. Search the internet for recipes.

• Enjoy your New Year’s toast together as a family in the NICU with your baby, even if you do it well before midnight to accommodate bedtimes of your other children.

Spending your holidays at the NICU is not something you planned on. But, hopefully, the New Year will be one of improved health, weight gain for your preemie, and a soon-to-be united family at home.

 

Note:  This post is part of the weekly series Delays and Disabilities – How to get help for your child. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also view a Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Visiting Santa is do-able for kids with special needs

17
Dec
Posted by Barbara

child w SantaThe sensory challenges experienced by many children can make a visit with Santa impossible, or at best, uncomfortable. From the noise and crowds of a busy mall, to the waiting on a long line, a fun and fulfilling experience can soon become a very stressful one. The sensory overload can quickly turn the visit upside-down. It is for this reason that a specially trained Santa and a well-planned visit can make all the difference in the world.

The good news

Across the U.S., there are opportunities for kids with special needs to visit Santa in a sensory friendly way. Malls, private organizations such as occupational therapy centers and doctor’s offices, fire stations, and many local disability groups offer programs that feature a specially trained Santa who welcomes children with varying needs. These Santa visits are unhurried, calm, quiet and understanding of the sensory issues of little ones. Parents often say the best part about visiting a sensory special Santa is not having to wait on long lines (which can be an impossible hurdle for many kids with special needs). An advance reservation may be required, so call ahead to learn about any important details that will help your visit go smoothly.

To locate a special Santa, check with the your local mall, town hall, parks and recreation department, fire and police stations, therapy offices, disability organizations, etc., to see if a “Special Santa,” also known as a “Sensitive Santa” or “Caring Santa” is in your area.

If you do see a special Santa, you might want to give the staff a quick heads up about your child’s needs. Or, you can write a short note to give to Santa before your child’s visit. The note can give a brief description of your child (eg. “Johnny is non-verbal but understands if you speak slowly,” or “he wants to tell you something, so please be patient and wait as he gets his words out”). Your note can also state the toys he wants for Christmas, so Santa can mention them and your child can nod in agreement. With a little planning and creativity, the visit can be smooth and successful.

If your child can not leave the house, you may be able to find a Santa that makes home visits. It is worth calling your local disability organization or town government to inquire. If there isn’t a program in your area, perhaps ask a therapist, special education teacher or another parent or relative familiar with your child’s special needs, to transform into Santa and visit your child.

It is a happy time of year, and a calm visit with Santa will undoubtedly make Christmas brighter for your child…and you!

 

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. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also view a Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Chickenpox, vaccinations and Angelina Jolie

16
Dec
Posted by Ivette

VaccineAngelina Jolie coming down with chickenpox is a good reminder for all of us to keep our vaccinations up to date! Chickenpox, also called varicella, is caused by a virus. Its symptoms include an itchy rash, blisters and fever. And before the varicella vaccine, people usually got chickenpox during childhood. Now, most kids get the vaccine in the first few years of life.

As a kid, I remember getting chickenpox along with several others in my kindergarten class. And as itchy and uncomfortable as I was, I still didn’t get it as bad as my little sister did years later – in fact, she got it twice, but that’s rare! Come to think of it, my sister was slammed three times by the virus when she got shingles last year. That’s right – the virus that causes chickenpox can also cause shingles later in life.

For most of us who were “lucky” enough to catch chickenpox in childhood, we probably don’t have to worry about getting chickenpox in adulthood, like Mrs. Pitt. But if you’ve never had chickenpox or aren’t sure, talk to your provider about getting the varicella vaccine, especially if you’re thinking about getting pregnant. Having chickenpox during pregnancy may cause some babies to get congenital varicella syndrome, a group of birth defects. Not all vaccinations are safe to get during pregnancy, so it’s best to get the varicella vaccine before getting pregnant.

In the meantime, here’s hoping Angelina has a speedy recovery!

Deck the halls…carefully

15
Dec
Posted by Lauren

holiday lightbulbsTis the season. Whether you are going to rock around your Christmas tree with bright lights and shiny ornaments, light up a menorah, or get ready for a festive New Year’s party, it is important to remember how to keep it safe for you and your family.

Every December, at this time, my family and I bring out the storage bucket filled with coils of holiday lights. This year we went through each of our many coils to check for broken or burned out bulbs and frayed wires. The last thing you want is to be half way up the tree with your strand of lights and realize a bulb has been shattered. Or worse, to have a defective strand of lights on your tree which could pose a risk of fire.

Here are some tips to decorate safely

Lights

Check your new and old holiday lights to make sure they are in good condition. If you see any broken bulbs, cracked sockets, frayed wires or loose connections, discard those strands. Use no more than three sets of lights per extension cord. Remember to turn off all of your holiday lights when you go to bed or leave your house as they can short out and start a fire.

Christmas trees and wreaths

Some trees and wreaths contain small mold spores that may trigger allergy and asthma symptoms and are irritating to the nose and throat. If your child is prone to allergies or asthma, you may want to purchase a fire resistant artificial tree to use during the holidays.

“Real” trees can dry out quickly causing needles to fall off easily. Not only does this make a mess on your floor, but it is also a fire hazard. Try to buy as fresh a tree as possible, and check your tree every day to make sure it always has enough water.

Trimmings

Decorate your tree with your child in mind. Ornaments are not only sharp and breakable, they can be a choking hazard. Put all of your fragile, small ornaments and decorations that look tempting to a toddler or young child towards the top of the tree to keep them out of reach. If you decorate with artificial snow sprays, they can irritate little lungs if inhaled. To avoid this, make sure you read all labels and directions on how to properly use the snow.

Plants

Holiday plants spice up any room, but keep them out of reach from your small children and pets. Plants such as poinsettias, mistletoe berries, holly and Jerusalem cherry can be poisonous if chewed or eaten.

Candles

Although lit candles are warm and welcoming, they are a fire hazard and dangerous for children to be around. Instead, consider purchasing battery operated candles. They look and flicker like “real” flames! You can even find ones with timers so that they turn on and off by themselves. But if you do use “real” candles, remember to keep matches and lighters in a safe place away from your little ones, and keep lit candles away from your Christmas tree.

Batteries

Check all the batteries in electronic holiday toys or ornaments to make sure they are secure and hidden. Button batteries are a choking hazard if they get into a curious toddler’s hands.

Take a couple of seconds before you start decking your halls to read all instructions and warning labels on products. With just a few extra moments of care, you and your family can decorate safely, and enjoy the holidays.

If you have any questions, email us at askus@marchofdimes.org.

Are you ready to have another baby?

12
Dec
Posted by Sara

pregnant woman and toddlerEveryone has a different opinion about how far apart in age their children should be. Some people like to have their babies very close together, while others like a little more time between each child. But there may be more to consider than just personal preference. A recent study found that women who wait less than 18 months between pregnancies are more likely to give birth before 39 weeks.

The study found that mothers who had less time between pregnancies were more likely to give birth before 39 weeks when compared to women whose pregnancies were 18 months apart or more. Women with pregnancy intervals of less than 12 months were more than twice as likely to give birth prematurely (before 37 weeks) when compared to women whose pregnancies were at least 18 months apart.

“Short interpregnancy interval is a known risk factor for preterm birth, however, this new research shows that inadequate birth spacing is associated with shorter overall pregnancy duration” states  Emily DeFranco, Assistant Professor of Maternal-Fetal Medicine at the University of Cincinnati College of Medicine in Ohio and the Center for Prevention of Preterm Birth at Cincinnati Children’s Hospital Medical Center, and co-author of the study. She adds: “This study has potential clinical impact on reducing the overall rate of preterm birth across the world through counselling women on the importance of adequate birth spacing, especially focusing on women known to be at inherently high risk for preterm birth.”

So if you are thinking about having another baby, make sure you schedule a preconception checkup with your health care provider.  The two of you can discuss any health concerns you may have as well as the time between your pregnancies.  Also, if you have had a premature baby in the past, make sure you discuss ways to reduce your risk of having another premature birth.

Toys glorious toys!

10
Dec
Posted by Barbara

playing with toysAt one time, parents did not have many options to find appropriate toys for a child with a disability or developmental challenge. Nowadays, it is possible to find just the right kind of toy for your child’s individual needs. She can play at her own level and be a very happy camper.

What child does not love toys? It seems to me that the word “toy” is synonymous with “child.” It is hard to separate the two. At this time of year, there is a seemingly endless variety of toys available. Yet, for parents of a child with special needs, it can seem hard to find toys that are appropriate for your child’s condition.

Fortunately, a simple internet search for “toys for kids with special needs” will yield multiple sites that feature toys for children with physical or cognitive challenges, speech and developmental delays, hearing or vision impairments, sensory disorders, issues related to autism and learning disabilities. You can find everything from sensory swings to board games with larger print. You will not be at a loss to find the right toy for your little one.

When searching for toys by age group, remember to keep your child’s adjusted age in mind if he was born prematurely. And, see this post for other tips on shopping for toys kids with special needs.

This year, let your fingers do the searching and find the perfect gift for your child with special needs. The hours of fun your child gets from a toy that is right for him will give you hours of joy!

 

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. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also view a Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Wind chill, hypothermia and frostbite, oh my

08
Dec
Posted by Lauren

snowstorm1Outdoor activities during this season can help you and your family beat the winter blues. The days are getting colder and the sun is going down earlier, but if you’re busy having fun, you may hardly notice. Last week I talked about keeping you and your baby warm during the winter. But even if you and your little one are bundled, things like wind chill, hypothermia or frostbite can still happen.

Wind Chill

• Wind chill is the temperature your body feels when the air temperature is combined with the wind speed. It is based on the rate of heat loss from exposed skin caused by the effects of wind and cold. As the speed of the wind increases, it can carry heat away from your body much more quickly, causing skin temperature to drop.
• Always be aware of what the wind temperature is before you or your children go outside. If you are unaware of the wind chill, it could be only a matter of time before frostbite and hypothermia set in.

Frostbite

• Frostbite is when the skin and outer tissues of the body have become frozen. This can happen on fingers, toes, ears and nose. They may appear pale, gray and blistered. Your child may complain that his/her skin burns or has become numb.
• Frostbite can happen quickly. The risk is increased in people with reduced blood circulation and among those not dressed properly for extremely cold temperature.
• The Centers for Disease Control and Prevention (CDC) say a victim is usually unaware of frostbite until someone else points it out because the frozen tissues are numb.
• If frostbite occurs, bring your child inside and place the frostbitten part in warm (not hot) water or apply warm washcloths to the area. Call your child’s health care provider if numbness continues for more than a few minutes.

Hypothermia

• Hypothermia is a medical emergency that occurs when your body loses heat faster than it can produce heat, causing a dangerously low body temperature. This can happen when your child is playing outside in extremely cold weather, if his clothing gets wet or if he is not dressed appropriately for the weather.
• Hypothermia is most likely to occur at very cold temperatures, but it can occur even at cool temperatures (above 40 degrees Fahrenheit) if you become chilled from rain, sweat or submerged in cold water.
• Signs of hypothermia include shivering, becoming lethargic or clumsy and slurring speech. Infants will become bright red, have cold skin and very low energy.
• If you notice any of these signs in your child, contact his health care provider immediately or call 911. Take your child indoors, remove any wet clothing and wrap him in blankets or warm clothes until help arrives.

With a little knowledge and some advance preparation, you and your child will enjoy the cold, winter season without any problems. Click here for more information on how to stay warm and safe this winter.

 

Prescription drugs: new FDA labeling rules will help pregnant women

05
Dec
Posted by Sara

prescription medsCurrent FDA guidelines about medication safety during pregnancy can be very confusing for women and their health care providers. Soon, however, doctors will have access to more information about the safety of prescription drugs during pregnancy.

When you are pregnant, you try to avoid anything that may harm your baby. But sometimes, you need to take medications for your own health. Managing chronic conditions like diabetes, asthma, and high blood pressure is very important, especially during pregnancy. But it is often difficult to know what medications are safe. And current FDA safety categories can be very confusing and difficult to understand.

However, in the summer of 2015, drug manufacturers will need to start providing additional details about medication safety in pregnant and breastfeeding women. The new labels will have to state how the safety information was obtained and whether the data was the result of scientific studies in people, or if it was obtained through study of animal models. The manufacturers must also include how much of the drug is excreted in breast milk and whether it affects the nursing baby, as well as how the drug may affect future fertility for both men and women of reproductive age.

These changes in labeling will provide doctors with more information about a medication’s safety during pregnancy. The information will not be on the actual medication bottle. It will be included in the official drug labeling information that doctors use when prescribing medications. It may also be included in the printed materials that pharmacies often include when filling prescriptions. This change in labeling does not apply to over-the-counter medications, though.

The new guidelines will allow doctors and patients to weigh the pros and cons of which medication is best to take during pregnancy for a given condition based on scientific evidence. And it will provide doctors and patients with more safety data than has previously been readily available.

The March of Dimes hails the release of the FDA’s final rule on pregnancy and lactation drug labeling information for prescription drugs. According to Dr. Jennifer Howse, president of the March of Dimes the new rules “will drive critical improvement to prescription drug labels regarding known effects on pregnancy, breastfeeding, and fertility.  The rule takes vital steps to improve the organization, readability, and usefulness of this information, which will enable women and their providers to find it and use it more readily….It is important to note, however, that this rule is only a first step, and it does not address other crucial issues related to pregnancy, lactation, and prescription drugs. The March of Dimes looks forward to working with the FDA and other interested stakeholders to ensure that appropriate research is performed and data generated to allow women and their health providers to make fully informed decisions about medication and its expected impact on pregnancy, lactation and childbearing.”

Getting back in the swing

03
Dec
Posted by Barbara

unhappy childThe Thanksgiving holiday is behind us. Be honest now…how many of you are still having a bit of trouble trying to get back to your old routine? I know I loved having a few unstructured days of sleeping late, eating rich foods (mashed potatoes, gravy, yams and stuffing to name a few), and of course eating desserts. At my house we had apple pie with vanilla ice cream, and a double chocolate layer cake for anyone who was not an apple pie fan. OR, for most of us…we ate both (and loved every morsel)!

Now is the time when settling back to your old routine seems incredibly hard. Have you had trouble falling asleep, or worse- getting up, this week? Are you craving sweets during the day? Do you just seem to be feeling out of sync? Sluggish? (I think I have described myself pretty well, I’m afraid to say. How about you?)

Returning to your prior routine after a holiday is hard for most people. But it is especially hard for a child with special needs. Straying too far off from the usual foods, bedtimes, and daily routine can wreak havoc on your child’s system causing him to feel lost or a bit out of control. Due to his special needs, it may take longer to get back on track again, too. So, if YOU are feeling a bit out of sync this week, your little one is feeling worse, and will probably take longer to return to his prior usual routine.

Have patience and look for the bright side

I call getting back to your prior routine “re-entry” because it can really feel like a jolt to your system. In one of my prior posts, I wrote about the post-holidays adjustment period, and how the change in routine can cause a temporary step backward for your child. You need to be aware that this can happen, and gently try to get your child back on track.

For other children, the holidays can bring about a surge in new connections, making your little one gain language skills or venture to do new things. So, be on the lookout for new behaviors or positive gains.

Remember, if you are having trouble getting back to your prior “normal,” your child is probably experiencing the same feelings. Lots of praise and positive reinforcement for little steps, along with a boat-load of patience will soon get you all rolling again.

Check out these blog posts to find other coping strategies, such as creating your child’s personal “memory” or “transition” booklets, or re-adjusting to life after a vacation. If you have a technique of your own that works for your child, please share it!

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. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also view a Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Keeping you and your baby warm in winter

01
Dec
Posted by Lauren

Staying warmDecember is here and the temperatures in many parts of the country have turned from cold to freezing. Sipping hot chocolate under a blanket and ice skating at the local rink are some of my favorite activities during this month. But, staying warm and healthy this season is my top priority. Here are some tips to help keep you and your little one safe and warm.

Brrrrrrrr, it’s cold outside! Dress for the weather.

Listen to weather forecasts -

Before you or your child gets dressed to go outside, especially for outdoor activities, it is important to know the weather conditions. Dressing for 20 degree weather is different than dressing for 40 degree weather.

Layer it on -

Dress your little one in several thin layers, such as a T-shirt, long sleeved shirt, sweater or sweatshirt and a winter jacket, preferably waterproof and wind resistant. Your child should also have warm socks and waterproof boots, gloves or mittens and a hat. For older babies and young children, dress them in one more layer of clothing than you would wear in the same conditions.

Limit time outside-

Snow is fun and great to play in, but your little one should come inside frequently to warm up and change out of wet clothes, if needed. Wet clothing chills a body rapidly. If your child starts sweating while playing outside, remove an extra layer of clothing. Excess perspiration can increase your child’s heat loss. And remember, if you see your child shivering, that is a sure sign to go indoors and warm up.

Stay healthy through the cold weather-

The low temperatures outside can cause your home to become colder and dryer. You may find your skin feels much more dry than usual. Many pediatricians feel that bathing an infant 2 or 3 times a week is enough for the first year. Bathing more frequently may dry out your baby’s skin, especially during this cold season.

As the temperatures drop at night, you may be tempted to put a warm blanket over your infant, but keep all blankets, bumpers, sheepskins and other loose bedding out of your infant’s crib. Instead dress your baby in a warm onesie sleeper.

Keeping hands clean is also important to avoid getting sick and spreading germs. Make sure your family frequently washes their hands to keep viruses like colds and flu from spreading.

December is a great time to take your children out for fun winter activities, but make sure they are dressed appropriately and take precautions to keep your whole family healthy this winter. With a few extra steps, everyone in your family will be warm and healthy despite frigid temperatures.

These and other tips may be found on the CDC website.