Posts Tagged ‘Share Your Story’

Helping your baby thrive in the NICU

Friday, December 2nd, 2016

This video clip contains great information on nurturing your baby in the neonatal intensive care unit (NICU). In the video, real NICU parents describe different ways to bond with your baby while in the hospital, including skin-to-skin or kangaroo care.

 

 

For more helpful information about caring for your baby in the NICU, please visit our website. Learn about resources and support that can help you and your family while your baby’s in the NICU. Also, you can go to Share Your Story, the March of Dimes online community for families to share experiences with prematurity, birth defects or loss.

Have questions? Text or email us at AskUs@marchofdimes.org.

Understanding retinopathy of prematurity (ROP)

Friday, November 4th, 2016

baby-eyesRetinopathy of prematurity is an abnormal growth of blood vessels in the eye. It mainly affects babies weighing about 2¾ pounds (1250 grams) or who are born before 31 weeks of pregnancy. ROP affects about 14,000-16,000 babies in the United States each year. If your baby has ROP, getting treatment right away is really important. The disease can develop very quickly and cause vision problems or even blindness if it’s not treated.

What causes ROP?

During the last 12 weeks of pregnancy, the eye develops quickly. When a baby is born full-term, the growth of the blood vessels that supply the retina is almost complete. The retina then typically finishes growing the first few weeks after birth.

However, if a baby is born too early, the blood vessels may stop growing or not grow correctly. Scientists believe that the edge of the retina then sends signals to other areas of the retina for nourishment. This results in abnormal vessels growing. These abnormal vessels are fragile and can bleed easily and cause retinal scarring. If the scars shrink, they pull on the retina and cause it to detach.

Risk factors for ROP

Some things make a baby more likely than others to have ROP. They include:

  • Premature birth.
  • Apnea. This is when a baby’s breathing stops for 15 to 20 seconds or more.
  • Anemia. This is when the body doesn’t have enough healthy red blood cells to carry oxygen to the rest of the body.
  • Heart disease
  • Infection
  • Trouble breathing or respiratory distress
  • Slow heart rate (also called bradycardia)
  • Problems with the blood, including having blood transfusions.

Stages of ROP

ROP is classified into 5 stages:

  • Stage 1 – Mildly abnormal blood vessel growth. These babies often get better without treatment and go on to have healthy vision.
  • Stage 2 – Moderately abnormal blood vessel growth. These babies often get better without treatment and go on to have healthy vision.
  • Stage 3 – Severely abnormal blood vessel growth. Some of these babies get better without treatment, but others develop a condition called plus disease. This means the retina’s blood vessels get big and twisted. Plus disease is a sign that ROP is getting worse, but treatment can help prevent retinal detachment.
  • Stage 4 – Severely abnormal blood vessel growth and part of the retina detaches. These babies need treatment because part of the retina pulls away from the inside wall of the eyeball.
  • Stage 5 – Total retinal detachment. The retina is completely pulled away from the inside wall of the eyeball. Without treatment, a baby can have severe vision problems or blindness.

Treatment options

Laser or cryotherapy are the most effective treatments for ROP. Laser treatment uses a laser to burn and scar the sides of the retina. This stops abnormal blood vessel growth and prevents scarring and pulling on the retina. Cryotherapy uses a metal probe to freeze the sides of the retina, thereby preventing additional blood vessel growth.

Laser treatments and cryotherapy are done on babies with more advanced ROP, such as stage III.

Later stages of ROP require more intense treatments. Scleral buckle involves placing a silicone band around the white of your baby’s eye (called the sclera). This band helps push the eye in so that the retina stays along the wall of the eye. The buckle is removed later as the eye grows. If it isn’t removed, a child can become nearsighted. This means he has trouble seeing things that are far away.

In a vitrectomy, the doctor removes the clear gel in the center of your baby’s eye (called the vitreous) and puts saline (salt) solution in its place. Your baby’s provider can then take out scar tissue, so that the retina doesn’t pull. Only babies with stage 5 ROP have this surgery.

About 90% of infants with ROP fall into the mild categories and do not need treatment. But ROP can get worse quickly so early diagnosis and appropriate treatment (if needed) are very important. Your baby should be seen by a pediatric ophthalmologist. This is a doctor who identifies and treats eye problems in babies and children. The first eye exam should take place 4 to 9 weeks after birth, depending on when your baby was born.

You can read more about ROP on our website.

If your baby has ROP, visit our online community at Share Your Story to find a network of parents of babies with ROP. You can connect with them for support and comfort throughout your baby’s treatment.

Have questions? Text or email us at AskUs@marchofdimes.org.

Necrotizing enterocolitis (NEC)

Friday, November 20th, 2015

Passing the time while your baby is in the NICUNecrotizing enterocoloitis, also known as NEC, is a condition of the intestinal tract that almost only affects premature babies. It often begins 2 or 3 weeks after birth and appears in preemies who seem to be getting better. NEC occurs when the lining of the intestine becomes inflamed. Most of the time, the damaged section of the intestine will heal on its own. But in some cases, the tissue dies. When this happens, that part of the intestine no longer works the way that it should. This damage may cause the intestine to tear. The bacteria in the intestine can then enter the blood and this can then lead to infection throughout the body.

What causes NEC?

Researchers are still not exactly sure what causes NEC. But in premature infants, it is probably related to the immaturity of the baby’s intestine. Some other factors that may contribute to NEC include:

  • An injury to the immature intestine
  • Reduced blood flow to the intestine
  • Growth of bacteria in the intestine that damages the intestinal wall

What are the signs of NEC?

NEC can be difficult to diagnose. The early signs can be similar to other infections or to problems caused by feeding difficulties often seen in preemies. However, NEC can get worse very quickly. Some common symptoms include:

  • Loss of appetite, not tolerating feedings
  • Red, painful, and swollen belly
  • Diarrhea or bloody stool
  • Decreased activity
  • Body temperature instability (may be lower than normal or fluctuate)
  • Episodes of low heart rate or apnea
  • Sometimes greenish vomit

Doctors can diagnose NEC with an X-ray of the belly.  When they examine the X-ray, they are looking for tiny gas bubbles inside the walls of the intestine. They can also see if air has leaked out of the intestine through a tear or hole.

How is NEC treated?

Early diagnosis and intervention is very important. Typical treatment includes:

  • Stopping oral (mouth) feedings and replacing with IV nutrition to give the bowel time to rest,
  • Inserting a tube through the nose and into the stomach to remove air and other secretions from the intestine,
  • Giving broad-spectrum antibiotics to treat and prevent infection,
  • Continuous monitoring using X-rays, blood and urine cultures,

If these interventions work, NEC typically lasts 2-3 weeks, although the critical stage is often over after a few days. Usually doctors will continue IV feedings until the intestines heal and the pockets of gas have been gone for 5 or more days. They will then start to gradually re-introduce oral feedings.

Surgery may be necessary for those babies who do not respond to the treatments above. In that case, the surgeon will remove the damaged section of intestines.

How can NEC be prevented?

Researchers are trying to better understand NEC so that they can prevent it. However, here are some things that seem to be beneficial:

  • It is important to start oral feedings early. The introduction of tiny amounts of milk to the digestive system may help the intestine to mature faster and possibly reduce the chance of your baby developing NEC.
  • Early feeding with colostrum and breast milk may be beneficial. It is easy to digest, supports the growth of good bacteria in the intestine, and helps to build your baby’s immune system.

If your baby has NEC or had it in the past, please go to Share Your Story where you can connect with other families and find comfort, support, and advice.

Have questions? Text or email us at AskUs@marchofdimes.org.

March of Dimes NICU Family Support® program offers services to thousands of families every year

Wednesday, September 23rd, 2015

Nurse and mom in NICUNow in its 14th year, this unique program offers comfort, support and information to families who have a baby in the NICU (neonatal intensive care unit) at over 120 hospitals across the U.S.

Babies in the NICU may have been born too small, too soon, or with a medical condition that requires intensive care. Throughout the NICU experience, parents can be involved in their baby’s care in a variety of important ways. The March of Dimes developed the NICU Family Support program to help support NICU families during their baby’s time in the NICU. The program also educates NICU staff about the best ways to support babies, families, and each other.

Specialized materials for long and short NICU stays

Hospitals with a NICU Family Support program are able to offer their families relevant, NICU-specific materials including a keepsake booklet, a guide for parenting in the NICU, and a NICU guide and glossary. As part of the program, hospitals also receive information for extended family members such as grandparents and siblings.

There are also materials for families whose babies stay in the NICU less than 14 days, a common experience that can also be very frightening and stressful.

Families can access March of Dimes NICU resources online from any device with an internet connection, in both English and Spanish. Topics include medical care, understanding equipment, how to hold and feed your baby in the NICU, becoming an informed parent, and many other important subjects.

Hospital staff education

NICU Family Support also provides ongoing education for hospital staff. This education focuses on best practices in supporting families, and the benefits of appropriate family-centered care for NICU babies at every stage of development. Training for staff is based on best practices and evidence based care, to help support them in their important role.

Parent to Parent online community

Support from other parents can be found on our online community, Share Your Story where current and “graduate” NICU parents reach out to help guide and comfort one another. Parents can log on and post a comment or question to join this warm and inviting group.

 

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

See other posts on how to help your child including how to transition from the NICU to Early Intervention services.

 

The NICU–what you need to know

Friday, November 21st, 2014

in-the-NICU_jpg_rdax_50Having a baby admitted to the NICU can be frightening and confusing. There is a lot of information to learn and understand very quickly. It is easy to feel overwhelmed, stressed, and anxious. But understanding what is going on and knowing what to expect can help lessen anxiety and make you feel more confident about being a parent in the NICU. We have many resources available online that can help you.

As you probably learned very quickly, the NICU is a busy place. The babies need 24-hour care from a number of different medical professional. Here’s a list of NICU staff and what they do. Some or all of these people may be part of the NICU team at your hospital.

There are a number of conditions that babies may develop while they are in the NICU. It is important to know that every baby is different, and your little one may not have any of these complications or may have only one or two. However, here you can read an overview of some common conditions that may be treated in the NICU. If you have more specific questions about a certain medical condition, please email us at AskUs@marchofdimes.org and we will do our best to get you the information you need.

One of the most intimidating factors of the NICU can be seeing all the different machines that are hooked up to your baby. Here is a guide to some of the common equipment you see in the NICU. Once you understand the purpose of the machines, what they are doing, and how they are helping your baby, you may feel a little more comfortable. You can also read our post about understanding your preemie’s cues, to help you better understand her expressions and reactions.

You have probably already realized that there are many tests your baby will have while she is in the NICU. Blood draws, ultrasounds, eye exams, and weight checks…there is a lot to keep track of during her stay. These tests help diagnose any problems and help determine how they should be treated. They also help to monitor your baby’s progress. If you have any questions about what tests are being done, or the results of any testing, make sure you talk to your baby’s doctor or NICU nurse.

Our NICU Family Support Program offers comfort and materials to NICU families during their baby’s stay. The March of Dimes currently partners with over 120 hospitals in the US. You can ask the head nurse of your NICU whether your hospital is a NICU Family Support Partner.

Finally, one of the most important resources that you can access is Share Your Story.  Reaching out to other parents who understand exactly what you are going through can be very helpful. Giving and receiving comfort, support, and advice can help you to stay positive during your baby’s time in the NICU.

Honoring parents with angel babies

Wednesday, October 15th, 2014

yellow butterflyThe loss of a baby is heart wrenching.  As today is Pregnancy and Infant Loss Awareness Day, I want to take a moment to honor those parents who have angel babies. Most people cannot even imagine being in their shoes for an instant, yet alone having to live a day-to-day existence without the baby they continue to love.

The loss of a baby touches so many people in profound and long lasting ways. No two individuals grieve in exactly the same manner. The mother may grieve differently from the father. Children who were expecting their sibling to come home from the hospital experience their own grief as well. Even grandparents and close friends may be deeply affected. The ripple effects from the loss of a baby are widely felt.

The March of Dimes is committed to preventing premature birth, birth defects and infant mortality. It is our hope that through continued research, we will have a positive impact on the lives of all babies so that fewer families will ever know the pain of losing a child.

If you or someone you know has lost a baby, we hope that our online community, Share Your Story will be a place of comfort and support to you. There, you will find other parents who have walked in your shoes and can relate to you in ways that other people cannot. Log on to “talk” with other parents who will understand your grief. We also have bereavement materials available free of charge. Simply send a request to AskUs@marchofdimes.org and we will mail them out to you.

Please know that the March of Dimes is thinking of you today and every day.

BRACE yourself – The ShareUnion message

Wednesday, October 1st, 2014

BRACE yourself poseBRACE yourself for your new normal. This is the acronym that keynote speaker Kevin Bracy imparted to dozens of women at the 10th annual ShareUnion in Phoenix, Arizona. ShareUnion (SU) is the annual gathering of members of Share Your Story, the online community of the March of Dimes, where parents reach out and support one another. This year’s theme was “Finding your new normal.”

The well-known motivational speaker inspired the women who face daily struggles associated with prematurity, infant loss, or raising a child with a developmental delay or disability. The speaker himself is no stranger to loss or the long term effects of prematurity. He and his wife, Jessica, have a 13 year old son who was born at 28 weeks gestation and suffers from significant challenges. Nine years ago, the Bracys lost a son who was born at just 22 weeks gestation. They also have a 21 year old daughter who is healthy. The Bracys embody the mission of the March of Dimes. Jessica has been a Share Your Story member for years, and sent her positive vibes to the group via her husband.

Bracy’s messages are universal, but they are best embraced by anyone who is faced with a constant struggle. His first message, BRACE yourself, (while crossing your arms over your chest with your hands in fists) is meant to help lift you up when you are feeling overwhelmed.

BRACE yourself stands for:

B – Be good to yourself – Be kind to yourself.
R – Regroup and refocus when you need to, especially when your life seems to be getting out of control.
A – Attitude – Always be attitude conscience. Let the “inner you be expressed by the outer you.”
C – Cause centered – Focus on the important people and things in your life.
E – Embrace change. Don’t fight it. Adapting will make your life better.

Accept, adapt and embrace your new normal. Don’t “go through” your challenges, “grow through them” Bracy says. For many SU moms, this advice resonated as they face the daily struggles of caring for a child with special needs as well as themselves and their families.

Mouth over mind – Bracy’s 2nd message

“When the mind goes negative, the mouth goes positive” Bracy explained. He recounted that the great fighter Muhammad Ali would talk out loud to himself before a fight. Ali would say he was the best and he was going to win. He spoke out loud to himself because he believed that his mind could talk his body into greatness. Bracy recommended that when your mind starts thinking of negative scenarios, quickly talk out loud, positively, and it will change the direction of your thoughts. Your mind can’t be negative if you are talking positively. By speaking out loud, you switch off your negative thoughts. Bracy then proved his point through a group exercise. Powerful stuff.

For families affected by prematurity, infant loss, disabilities or birth defects, Bracy’s messages were uplifting and inspiring. “Win the day, one day at a time” he concluded. Judging by the standing ovation he received, everyone became a winner that day.

 

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.

If you have comments or questions, please send them to AskUs@marchofdimes.org. We welcome your input!

Help for sensory issues

Wednesday, June 18th, 2014

child in ball pitSensory issues can make or break your child’s day, and yours. Last week I discussed the different kinds of sensory problems that many kids experience. Today I offer some treatment options based on parent feedback.

For all of the senses, and especially for tactile sensitivities (touch), Sensory Integration (SI) therapy, a specific kind of therapy used by occupational therapists, has been a popular form of treatment. A recent study showed that a group of autistic children who received SI therapy reduced sensory difficulties in contrast to the children who did not receive SI therapy. It is thought that this form of therapy helps your child’s brain adapt to sensory information so that he can make adjustments in his daily life.

The therapy is lots of fun – it usually involves balls, swings and other game-like movements that engage the senses. It also can include wearing compression clothing to help decrease sensory seeking behavior. Although it has been around for several decades, SI therapy has not been studied until more recently. The American Occupational Therapy Association has information about sensory issues and SI therapy on their website and on this factsheet. The American Academy of Pediatrics (AAP) reminds parents there is limited data on the use of sensory based therapies and recommends that parents and pediatricians work together to determine if SI therapy would be appropriate for your child.

Treatment for eating issues

Since good nutrition is important for health and growth, you may find yourself at your wits end to get your child  to eat a balanced diet. For children with aversions to many foods, occupational therapy may help, too. There are various methods that a therapist may use to gradually get your child used to different textures or tastes.

You might also ask your pediatrician if multivitamins or other supplements are recommended, especially if your child’s taste issues has made it so that he does not eat many foods. I used to open vitamin capsules and mix them in my daughter’s food (such as spaghetti sauce) in order to ensure she got her daily dose of essential vitamins and minerals. Smoothies with vitamins or protein powder may also be a good substitute or addition to a meal.

Another option is to speak with a Registered Dietitian (RD) who specializes in children’s eating issues; they are trained to know how to create balanced diets and often have experience with children who have sensory issues. Ask your child’s doc or call your local hospital for a referral.

Other treatments

Some parents report that acupuncture as well as other kinds of treatment have helped their child decrease sensitivity.  Again, consulting with your child’s pediatrician is important before deciding on a treatment plan.

Where to get more info

  • The March of Dimes’ online community Share Your Story offers a way for parents to share their experiences and treatments for children experiencing sensory problems. Feel free to log on and join a discussion or ask a question.  Parents sharing ideas and information is key to helping your child overcome obstacles.
  • Email AskUs@marchofdimes.org and request additional resources. We can refer you to a list of books written for children (to help them understand why they feel sensitive) as well as books written for adults (to help you understand your child’s sensory issues). We’re happy to help 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 and click on “Help for your child” in 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.

The NICU experience

Friday, April 23rd, 2010

Have you or someone you know had a baby born sick or prematurely? If so, you’re all too familiar with the emotional rollercoaster of caring for a baby in the neonatal intensive care unit (NICU). You’re thrown into a whole new world with new expectations, decisions and language. Click here for help on parenting a baby in a neonatal intensive care unit (NICU).

You can also visit, Share Your Story. This is an online community for past and present NICU families. You can participate in online discussion, create a blog or just make friends.

I’m walking in March for Babies this Sunday in support of all of the families affected by prematurity, birth defects and newborn loss. No one is working harder than the March of Dimes to helps families have healthier babies.

Are you walking this weekend? If so, where and why?

Parents’ ordeal continues long after NICU

Tuesday, August 25th, 2009

nicu-baby2Most moms and dads anxiously await the arrival of their new baby after a healthy 9 months of pregnancy. But for some, that day may come too early and it can mean baby will spend time in the neonatal intensive care unit (NICU).

Having a newborn baby in the NICU, especially one that is born prematurely, can be a heart wrenching experience for moms and dads. The effects of this traumatic event on parents can last long after baby has left the NICU and is on the way to a healthy recovery. The New York Times published an article today that shares compelling stories from former NICU parents who continue to deal with this stress as baby grows older.

If you or someone close to you is in a similar situation with a baby in the NICU, you may want to visit our online community, Share Your Story. This community of preemie and former NICU parents offers comfort, gives guidance to and shares their experiences with other moms and dads also going through the NICU experience. Talking with someone who’s been through it all before can help moms and dads to better cope with this difficult ordeal.