Posts Tagged ‘Share Your Story’

March of Dimes resources for NICU parents

Thursday, September 13th, 2018

Being a parent in the newborn intensive care unit (also called NICU) can bring a mix of emotions, like fear, loneliness and anxiety. It can leave you with so many questions and a longing for support and understanding. March of Dimes helps moms and families throughout the NICU journey, as well as through every stage of pregnancy. It’s what we do. We invite you to use our digital resources to get information, answers to your questions and useful tools. They also can connect you with women and families who have had similar pregnancy and NICU experiences.

March of Dimes Facebook Mentorship Program for NICU Grad Moms:

If you’ve recently brought your baby home from the NICU, we’ve launched a digital platform to pair you with a fellow NICU grad mom as a mentor. Our Facebook Mentorship Program connects you with a support system to help you balance self-care with taking care of your baby, find support from moms who know what you’re going through and get advice and content from a trusted source like March of Dimes. If you’re interested in participating as a mentee, visit our Facebook Mentorship Program.

March of Dimes My NICU Baby™ App:

My NICU Baby app provides answers, tools and support to help you focus on your baby during the NICU stay. Track your baby’s feedings and learn about NICU staff, policies, equipment and terminology. Designed by experts, the app can help you advocate for the best care for your baby. Available for free on the App Store and Google Play. Visit mynicubaby.org for more information.

Share Your Story®:

Share Your Story is a warm, supportive online community filled with families who have been touched by, inspired by or personally affected by the mission of March of Dimes. These families know what it means to face uncertainty and fear at a time when most people expect excitement and joy. The community is fueled by caring, helpful individuals who “get it” because they have been where you are now. Share Your Story offers understanding, healing, friendship and support. Join Share Your Story.

Getting your other children ready for a visit to the NICU

Tuesday, August 21st, 2018

If your baby is in the newborn intensive care unit (NICU) and you have other children, you may wonder about how to get them ready to meet their new brother or sister. The truth is that the NICU can be overwhelming and maybe even a little scary for kids, especially the first time they go. But there are things you and your partner can do to prepare your children for a NICU visit:

  • Talk to your children about rules to follow in the NICU. For example, tell them that they’ll need to wash their hands in the NICU and whether or not they can hold the baby.  
  • Keep visits short. Some children may get bored while visiting, so try to keep visits to less than 30 minutes. Having another adult there can be helpful in case you want to stay with your baby after your other children leave.
  • Describe what they may see. Tell your children what the baby looks like, including how big or small she is. Show your children pictures or videos of the baby, her bed and medical equipment.
  • Explain what the NICU equipment does. The machines in the NICU may seem less scary if children know what some of them do.

Before bringing children to the NICU, ask staff about guidelines and policies. Some NICUs may not allow young children inside to help protect the babies from getting an infection. Other NICUs may ask to test children for illnesses before they’re allowed to visit. If your children are not allowed to visit, ask them to make drawings or photo albums to help them feel like they’re helping and loving their little brother or sister.

Visit marchofdimes.org to learn about resources that can help you and your family while your baby’s in the NICU. You can also visit shareyourstory.org, the March of Dimes online community for families to share experiences with prematurity, birth defects or loss.

Taking care of yourself while your baby is in the NICU

Tuesday, May 22nd, 2018

Having a baby in the newborn intensive care unit (also called NICU) can be very stressful for you and your family. There’s so much you need to learn and so many unknowns. It is normal that you focus most of your attention on your baby’s needs, but you also need to think about your own needs. Taking care of yourself can help you stay healthy and feel better. When you are feeling well, you will be in a better state of mind to help your baby.

Here are five things you can do to take care of yourself when your baby is in the NICU:

  • Maintain a daily routine. Having a routine can help you reduce stress. Every day focus on doing things that are good for you, like: eating healthy foods and regular meals, taking a relaxing shower, drinking plenty of water, and getting a good night’s sleep.
  • Make connections with other NICU families at NICU classes, in the family lounge or in the NICU hallway. NICU families may understand how you’re feeling better than friends and family who are not necessarily going through a similar experience.
  • Visit shareyourstory.org, March of Dimes online community for families. Here you can connect and share with moms and families who have a baby in the NICU. You can find support from these parents who also have a baby in the NICU, or are going through similar experiences with their babies.
  • Consider taking breaks from the NICU. It’s OK to make time for yourself and your family. Remember, you need to be ok to be able to help others.
  • Talk to a counselor. Counselors are professionals who specialized in mental health. Talking to a counselor may help you cope with your feelings. A counselor may be someone from the NICU staff or a social worker. The NICU Staff or your health care provider can help you find a counselor.

For more information about the NICU and how to take care of yourself and your baby visit marchofdimes.org

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!