Finding a pediatrician for your preemie

Finding a pediatrician to care for your baby after he leaves the NICU can seem like a daunting task. Your baby has been cared for by experts in the field of neonatology. Finding someone who you feel has the same expertise can be difficult.

Pediatricians specialize in caring for children from infancy through adolescence. The most important thing when you choose a pediatrician is finding someone with whom you feel comfortable. You may need to call the practice in the middle of the night with a question so you want to feel confident that the person on the other end of the phone can address your concerns. You may also want to take logistics into account. Babies—preemies and full-term newborns–go to the pediatrician a lot during their first year. Vaccines, weight checks, well-child care, never mind the occasional ear infection, fever, or cold all typically end up in a visit to the doctor. Remember that when choosing a provider. Driving an hour when all is well may not seem like a big deal, but making that drive with a baby crying inconsolably because he doesn’t feel well will be much more stressful. Someone local may also be able to help with things such as preschool recommendations, dentists and other community resources.

If you are trying to find someone, there are a few places to start. First, ask the neonatologist and NICU team for some suggestions. They will be familiar with the pediatricians who practice in or near the hospital and may be able to give you some guidance. Also, if there is a preemie support group, talk to the other parents. Parents usually have definite opinions about pediatricians so they will be honest and give you great information. And of course, make sure you check with your insurance company to make sure they cover the doctor you choose.

Once you narrow down your choices, make sure you visit the offices, talk to the doctors, and learn about how the practice is run. Some things that may be especially important are to understand how after-hours calls are handled and waiting room policies for sick children. Also, if your baby has special health care needs, make sure that the physician understands those needs and that the practice has the expertise to handle them.

You may have chosen a pediatrician before your baby was born and you may feel completely comfortable staying with that doctor. But after the NICU some parents may feel that their needs have changed. If that is the case, it is OK to find someone who you think may fit your new situation better. You will be working with your pediatrician for a long time, so you want to make sure that you feel good about your choice and that you have a good relationship.

Tags: health care provider, pediatrician, preemies, premature baby

 

Amniotic fluid surrounding your baby

What is this made of and how much is enough, too much? What’s normal, what’s not?

The amniotic sac that contains your baby begins to form about 12 days after conception. Amniotic fluid begins to form at that time, too. In the early weeks of pregnancy, amniotic fluid is mainly made up of water supplied by the mother. After about 12 weeks, your baby’s urine makes up most of the fluid. The amount of amniotic fluid increases until about 36 weeks of pregnancy. At that time you have about 1 quart of fluid. After that time, the level begins to decrease.

Sometimes you can have too little or too much amniotic fluid. Too little fluid is called oligohydramnios. Too much fluid is called polyhydramnios. Either one can cause problems for a pregnant woman and her baby. Even with these conditions, though, most babies are born healthy.

The amniotic fluid that surrounds your baby plays an important role in her growth and development. This clear-colored liquid protects the baby and provides her with fluids. Your baby actually breathes this fluid into her lungs and swallows it. This helps her lungs and digestive system grow strong. Your amniotic fluid also allows your baby to move around, which helps her to develop her muscles and bones.

Normal amniotic fluid is clear or tinted yellow. Fluid that looks green or brown usually means that the baby has passed his first bowel movement (meconium) while in the womb. (Most babies have their first bowel movement after birth.)

If the baby passes meconium in the womb, it can get into his lungs through the amniotic fluid. This can cause serious breathing problems, called meconium aspiration syndrome, especially if the fluid is thick. Some babies with meconium in the amniotic fluid may need treatment right away after birth to prevent breathing problems. Babies who appear healthy at birth may not need treatment, even if the amniotic fluid has meconium.

Tags: amniotic fluid, Baby, fetus, meconium, oliogohydramnios, polyhydramnios, Pregnancy

 

The Great Grape Race at Elk Run 2013

Join us tomorrow at Elk Run Vineyards for a 5k race!

 

Event details:

Saturday, August 24, 2013
Time: 5:00 PM
Registration Time: 4:00 PM
Elk Run Vineyards
15113 Liberty Road
Mt. Airy, MD 21771  

 

Run through beautiful Elk Run Vineyards before enjoying a sampling of their award-winning wines. The race will be timed by the Frederick Steeplechasers.

 

Enjoy live music, food and raffles at the post-race festivities.

Caring for the caretaker - put on your oxygen mask

It is hard to be a parent. It is doubly hard to be a parent of a child with special needs. Besides taking care of your child’s specific physical, mental and emotional needs, you also have to learn how to navigate the tricky waters of the early intervention or special education system. It is a journey filled with mysterious terms and specific procedures. In addition to your own job, other children and responsibilities, you now need to learn about the laws and procedures that are there to help your child. Yikes! Most parents are not equipped for the time and effort that this requires. This is understandable. Consequently, it is not unusual for parents to find that soon they are consumed with this “special” world, and their own personal health, well being and happiness are somehow forfeited. If this is happening to you, you are not alone. But, what can you do about it? This post will give you tips on how to take care of you.

It’s not selfish – it’s necessary.

You may feel that you don’t have the time to “take care of yourself.” Well, here is what I tell parents who say that they can’t take any time for themselves at all…. When you board an airplane, the flight attendant gives instructions on what to do with the emergency oxygen masks (in case you should you need them). FIRST you put it on your own face, and THEN you put it on your child’s face. The reason is because if you are busy putting it on your child and you run out of oxygen and pass out, you won’t be able to help your child at all. You have to make sure you are breathing, in order to help your child breathe. Sounds logical, right?

Well, the same holds true for you and your special needs child. You need to be fully functioning in order to do a decent job of taking care of your child. If you have a spouse/partner and other children, you need to be especially aware of yourself, so that you don’t run out of steam to be there for them, too. Taking care of you is not selfish – it is necessary!

What are some ways to take care of you?

In other posts, I have referred to Wrightslaw – the website where Pam and Pete Wright provide incredible help to parents ensconced in the special ed maze. Here are their survival tips which I highly recommend.

I would like to add a few more tips which have helped me:

• Take a bath. Bubbles, lavender oil or bath salts, coupled with soft music for 20 minutes help to relax all the senses and promote a sense of tranquility.
• Watch a fun TV show. Laughter is a masterful medicine. It sets off endorphins which will help you to feel better.
• Have a glass of wine and read a magazine or chapter from a book. Just remember to drink responsibly a don’t drink if you are pregnant.
• Be active. A short 10 minute walk a couple of times a day will be much more beneficial to you than you can imagine. If you can manage a longer walk, go for it. Perhaps you can take your child with you. Or, join a class (like Zumba) where you can dance off your frustrations as you have fun. The activity will create energy and help release tension and stress.
• Take a yoga, meditation or Pilates class or use a DVD. Relaxing is something that needs to be learned for most people. These classes combine getting in shape with learning to calm down.
• Breathe. Try this: breathe in deeply for 4 seconds, out for 6, and hold for 2. Do this several times a day, especially when you feel like you are about to blow up. It will help to settle your energy and calm you down.
• Join a support network – it can be online or in person. The March of Dimes’ Share Your Story is where parents can go for support, comfort and friendship if you have a preemie, a baby in the NICU, a child with medical conditions, and more. You can start your own conversation thread on a new topic if you like!

Bottom line

Remember, taking care of a special needs child is a marathon, not a sprint. You need to pace yourself and not burn out after the first couple of miles. Taking breaks and scheduling time for those things that bring you happiness (even if it is just for an hour), will help to refresh you. When you are refreshed, you can focus better and tackle your problems and tasks much more efficiently and calmly.

So, take out your oxygen mask, and put it on. It will help you to be the best parent you can be. I hope these tips help. Let us know what works 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.

Tags: Baby, caring for the caretaker, child, delays, disabilities, early intervention, help, relaxing, special education

Shop For A Cause

Save the date and join the March of Dimes and Macy’s as we Shop For A Cause on Saturday August 24th. Purchase a $5 shopping pass now at your local Macy's, or text* SHOP to 20222 to get the pass on your mobile phone, and enjoy some of the best savings of the year all day long on August 24 - save 25% all day on most items, including sale, clearance, and regular priced items including home & brands usually excluded. Save 10% on electronics, watches, furniture, mattresses, rugs, and floor coverings.

Shaken baby syndrome

Taking care of a fussy baby, or a baby who cries and cannot be consoled, is very, very stressful. Sometimes, usually out of frustration, a caregiver will shake the baby forcefully, in an attempt to make him stop crying. Never shake a baby because his tiny, fragile brain may be damaged.

It takes only a few seconds of shaking to cause irreversible brain damage in an infant. Further damage can occur if the shaking ends with the baby hitting something, like a wall or mattress. When a baby is shaken to the point where his brain is damaged, it is called shaken baby syndrome (SBS) or shaken impact syndrome.

SBS is the leading cause of death in child abuse cases in the United States. The average age of the victims is between 3 and 8 months. In most cases, the person who injures the baby is a young male in his early 20s. He often is the baby’s father or the mother’s boyfriend.

When a baby is shaken forcefully, the brain strikes the inside of the skull. This causes blood vessels and nerves to burst and the brain tissue to tear. Afterwards, the brain swells, causing more pressure and more damage. About half the babies who have SBS die.
Children who survive may suffer:
• Partial or total blindness
• Hearing loss
• Seizures
• Developmental delays
• Learning problems
• Paralysis
• Intellectual disabilities

In mild cases, the baby may appear normal after the shaking. But over time, he may develop one or more of the problems listed above. Often a problem is first noticed when the child goes to school and has trouble learning or behaving.

SBC can be totally prevented, especially when parents recognize when they are frustrated and get help to reduce stress.

If your baby won’t stop crying, our article Crying and Fussiness provides helpful tips.

Tags: brain damage, brain swelling, childhood blindness, crying baby, infant, intellectual disabilities, shaken baby syndrome, shaken impact syndrome

Preemies Today

 

We strive to promote compassion, inclusiveness, understanding and patience.

The birth of a premature infant is an extremely challenging and life-altering time. Preemies Today, a national preemies support network, is a non-profit organization located in Washington, DC. The organization provides a meaningful connection for preemies families both in the NICU and beyond by enabling them to meet others families whose lives have been affected by premature birth. Families share information, comfort one another, and gain a better understanding of preemie issues and local early intervention services.

Our Mission is to advocate for the needs of families experiencing the traumatic event of premature birth. We carry out this mission by providing education, support, resources, and a sense of community through outreach programs and parent-to-parent support from birth throughout childhood.

What We Do

Preemies Today offers local in-person support to families of preemies in the extended Washington DC metropolitan area. We provide on-line support to families of preemies located across the county and internationally. Preemies Today is made up mostly of parents of children born prematurely. We network with other parents groups, healthcare providers, therapists, and people providing community resources to obtain information for our members. To contact us regarding our programs email info@preemiestoday.org.

Resources

Preemies Today has developed a list of resources to support families of preemies from their time in the NICU through childhood. This is not an exhaustive list of all providers, but ones our members have used now or in the past. Your healthcare provider is a great resource for finding doctors and medical support, and always check to be sure the resource is a good fit for you and your preemie by asking questions about your particular situation. Also, be sure to find out if the resource can be covered or partially covered by insurance to limit out of pocket expenses.

Please check out our Helpful Tips for Families of Preemies!

Preparing for disasters when you have a child with special needs

It is important to know what to do to protect yourself and your family in case of an emergency. It is essential that you know what to do if you have a baby or child with special needs.

Since June is National Safety Month sponsored by the National Safety Council, and this week’s theme is emergency preparation, it is appropriate that I talk about how to prepare for an emergency when you have a child with special needs.
Where can you find information?

Family Voices is an organization dedicated to helping families care for their special needs children. They offer tips on how to keep your special needs kids safe in an emergency or disaster. They say:

“If your son or daughter has special health care needs, your emergency plan will probably be more complicated, involve more people, and may require equipment. This will be the case if your child or youth:

• Depends on electricity — to breathe, be fed, stay comfortable;
• Cannot be moved easily because of his medical condition or attachment to equipment;
• Uses a wheelchair, walker, or other device to move;
• Cannot survive extreme temperatures, whether hot or cold;
• Becomes afraid or agitated when sudden changes happen;
• Cannot get out of an emergency by herself for physical or emotional reasons.”
They recommend you download the interactive emergency form available on the American Academy of Pediatrics (AAP) website. This is a terrific resource which can be updated as your child grows and changes. You can see all of Family Voices ideas and resources on their webpage. They also have “Family-to-Family Health Information Centers” (F2F HICs) in every state to “provide assistance and support in emergency preparation.” Click here to learn more about the F2F HICs, or to find one in your state.

Our website has lots of good info on how to prepare for a natural disaster. In addition, Ready.gov has info for families with individuals who have special needs. They have an easy to follow preparation list. You will also find all sorts of tips, such as how your phone can alert you of an impending emergency.

How can your kids help?

You can get your kids involved in creating a plan, too. It helps them to feel involved and to better remember what to do when the time comes, because they helped to create the plan. Ready.gov has a kid-friendly webpage with activities to get them engaged in preparing for an emergency, which includes an activity book for kids.
They also have a printable brochure with tips on how to prepare for a disaster for people with disabilities that covers how to help individuals with functional or special access needs.

Bottom line

Don’t wait to prepare for an emergency or a disaster until it is upon you. With a little bit of foresight, you can have a plan in place and have peace of mind. And, if or when the time comes, your special needs child will be well taken care of.

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. Go to News Moms Need and click on “Help for your child” on the menu on the right side to view all of the blog posts to date. As always, we welcome your comments and input.

Tags: child, disabilities, disaster preparation, emergency preparation, how to prepare, hurricane, natural disaster, Special needs, storm, tornado

Words and terms - a whole new world

The early intervention and special education world is filled with its own language – words and terms that are probably unknown to you. In a prior post, I gave you a list of acronyms to begin learning some of the abbreviations for certain terms. In this post, I am pointing you to a wonderful resource on NICHCY’s website that will help make sense of all these terms. It will help you to understand IDEA (the Individuals with Disabilities Education Act), which is the law that applies to the world of early intervention and special education. For those of you who feel you are drowning in a sea of unfamiliar words, here is your lifeline.
Early intervention terms

First up are the key terms and phrases common in Part C of IDEA. This is the part of the law that applies specifically to babies and toddlers up to age 3. Go to NICHCY’s page on Early intervention Key Words and scroll down the page for easy-to-read definitions and examples of each of the following terms. (The terms in bold will take you to my prior blog posts for additional reading.)

· Consent

· Developmental delay

· Early intervention services

· Health services

· Infant or toddler with a disability

· Multidisciplinary

· Native language

· Natural environments

· Prior written notice

· Service coordination services

Special education terms

Likewise, for parents of children ages 3 – 21, NICHCY offers great explanations of many terms that you will hear and need to know that are in Part B of IDEA. (This is the part of the law that applies specifically to school aged children.) NICHCY’s Key Terms to Know in Special Education provides easy-to-understand explanations on the following topics (some of which I have already written about in a prior blog post, but NICHCY’s info is too good not to mention again, here).

Bikers for Babies 2013

Sunday, October 06, 2013
Time: 11:00 AM
Maryland International Raceway
27861 Budds Creek Rd.
Mechanicsville, MD 20659

What if the hardest day of your life….was your first?

 

Join us for the 10th Annual Southern Maryland Bikers for Babies!
Sunday, October 6, 2013 (Rain date: October 13, 2013)

11:00 am Gates & Registration open
12:30 pm Tattoo Contest (must register prior; $10)
1:00 pm Bike Show Awards (must register before 12:30 pm; $10)
2:00 pm Ride Starts

Click here to register. Registration includes entry into MIRock. Come early and enjoy the races, festive atmosphere, music, vendors, tattoo contest, & bike show. The 45 mile police escorted ride will begin at 2:00 with official line-up and start on the ¼ mile-racing track and will take you on a scenic ride through beautiful Southern Maryland when the fall foliage is at it’s peak. The ride will end at Apehangers Bar & Grill in Bel Alton, Maryland for a free after ride party with all the trimmings, including live entertainment by The Craze!

All clubs and all wheels welcome! Just leave your attitude at home.

Don’t ride? Bike in the shop? Register anyway and enjoy all the festivities and fundraising benefits.

Pre-register and receive a free 2013 Bikers for Babies Event Patch (Registration fee must be paid online prior to event date to qualify.)

Once you complete your online registration, please consider setting an additional goal of raising $100, $250, or even $1,000 by emailing your friends, family and co-workers and ask them to support your efforts in the fight to give every baby a healthy start.

Register for Bikers for Babies today! For more information, jabell@marchofdimes.com, www.bikersforbabies.org, 571-257-2310

Register for Bikers for Babies

 

Vacationing with a special needs child

When you have a child with special needs, taking a vacation can be a challenge. Often a child with a delay or disability does not like change of any kind – he may find it particularly upsetting and anxiety producing. So, removing him from his own bed, room and home can be difficult at best. You are going into alien territory…soooo scary! It may make you wonder if going away for a weekend or week is even worth the effort. But, with a little planning ahead of time and a few strategies for the road, it can usually be done successfully.

Prepare ahead of time

If you know that your little one dislikes change, it may be necessary to prepare him for what is to come. Whether or not your child can understand verbal language, create a photo that shows your child and all family members at your upcoming destination. You can do this by printing out a photo of the place where you are going, and then putting individual photos of your family on top of it (kind of like playing with paper dolls). Help your child participate with this task so he actively sees himself at the place. If you have a photo of the room where he will sleep, it may help for him to place himself on the bed. Tell the story of how you are going to put all of his things in a suitcase and go on a happy trip to this new place.

When it comes time to leave, be sure that your little one “helps” you pack his belongings. Start the process several days beforehand and leave the open suitcase in his room on the floor, so that he and you can place special items in it. Don’t forget the special stuffed animals or dolls, blankets or whatever comfort item your child loves. These will be very important transition items when you arrive at your destination; they will help him to associate “home” with his new surrounding.

Be sure to pack some of his favorite foods. Don’t assume that you will be able to find the staples that he likes in a new grocery store. Often, brands are different. My daughter used to eat only one brand of American cheese and could taste the difference if I substituted. By having a supply of consistent foods, you provide stability and comfort.

On the trip

If your child struggles with language (expressive or receptive), does not talk yet, or is non-verbal, you may be familiar with a communication picture book. This is a notebook that contains small photos or images of common items, such as his bottle, pacifier, specific toys, certain foods or snacks, a bath tub, your car, clothes or outfits (for getting dressed), pajamas, his bed or porta-crib, stroller, etc. You help your baby, toddler or child get through transitions by pointing to the image of what you are about to do. Likewise, you can encourage your little one to point to the item that he needs (eg. he may point to his bottle when he is thirsty). Going to new places can be especially scary for a special needs child. The more ways to encourage communication, the less frustrated and scared your child will be.

Often children behave one way at home and another way on the road. If your usual routine is upset, your child may act out. Positive rewards can go a long way in shaping behavior. But, you need to figure out what “reward” works best for your child. One example is to use a sticker chart (where a star or sticker is placed on a chart for every positive behavior). Another idea is to bring along a bag of surprises for your child to give as rewards for compliant behavior. For example, if your child is a toddler and has trouble allowing you to dress him, offer a “prize” for getting dressed without tears or tantrums. A tiny new item given as soon as he complies can go a long way in making him feel good about himself and may help you avoid an exhausting tantrum. (Dollar discount stores are excellent places to stock up on tiny, fun items for this purpose.) If you already have a behavioral system in place, try to keep it going while on vacation. CONSISTENCY is the key.

Where should you go?

Thanks to the internet, you can find almost anything at your fingertips. Here are some suggestions:

• Here are tons of travel tips, including 32 vacation destinations for families with special needs children, and a review of the best places to go.

• The Society for Accessible Travel & Hospitality offers tips and resources, including an article on their 10 Golden Rules of Autistic Travel.

• And here are 101 Things to Do When There’s Nothing to Do -Emergency time-wasters for planes, cars, lines, and waiting rooms.

Bottom line

Traveling with your special needs child may involve a good deal of foresight and coordination, but it may also bring you extra joys. The up-side is that the stimulation and family togetherness may help your child make developmental strides. My daughter’s language used to soar after a vacation. Her speech therapist encouraged us to take her on weekend jaunts as frequently as possible to help stimulate language development. The extra planning and care necessary to help my daughter with the transition from home to hotel was well worth it.

Have you traveled with your special needs child? Have any tips you’d like to share?

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. Go to News Moms Need and click on “Help for your child” on the menu on the right side under “Categories” to view all of the blog posts to date. As always, we welcome your comments and input.

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

Tags: Baby, birth defect, change, communication picture book, delays, disabilities, non-verbal, special needs child, speech delay, tantrum, transitions, travel, vacation