Posts Tagged ‘NICU’

What is newborn screening?

Wednesday, September 20th, 2017

Newborn screening looks for rare but serious and mostly treatable conditions. Babies with these conditions often look healthy at birth, but if the disorder is not diagnosed and treated early, a baby may develop serious health problems. Newborn screening identifies babies with these conditions so they can get the treatment that they need. Newborn screening includes blood, hearing and heart tests.

When is newborn screening done?

All babies in the United States get newborn screening before they leave the hospital, when they are 1 or 2 days old. Some states require that babies have newborn screening again, about 2 weeks later.

If your baby is not born in a hospital, talk to her provider about getting newborn screening before she is 7 days old.

What happens if your baby is in the NICU?

Babies in the NICU may require a special process for newborn screening. If your baby is born prematurely, at a low birthweight, or needs special care in the NICU, it’s possible that some of the treatments and procedures she’s receiving may affect newborn screening results. Often, babies born early will require more than one newborn screening blood draw to make sure that the results are accurate. Talk to your baby’s NICU team if you have questions about newborn screening.

How is newborn screening done?

Newborn screening is done in 3 ways:

  1. Your baby’s baby’s heel is pricked to get a few drops of blood. The blood is collected on a special paper and sent to a lab for testing. The lab then sends the results back to your baby’s health provider.
  2. For the hearing screening, the provider places a tiny, soft speaker in your baby’s ear to check how your baby responds to sound.
  3. For heart screening, a test called pulse oximetry is used. This test checks the amount of oxygen in your baby’s blood by using a sensor attached to his finger or foot. This test is used to screen babies for a heart condition called critical congenital heart disease (CCHD). CCHDs are the most severe heart defects. Babies with CCHD need treatment within the first few hours, days or months of life. Without treatment, CCHD can be deadly.

When will you get the results?

In most cases after your baby has had newborn screening, you won’t hear any more about them. Most newborn screening results are normal and if that is the case, families are not contacted. But you can always ask your baby’s health care provider for the results.

In rare cases when the screening results are out-of-range, you will receive a phone call about 2-3 weeks following the screening. This call can come from either the state newborn screening program or your baby’s health care provider and it usually means that your baby simply needs more testing.

How many health conditions should your baby be screened for?

The March of Dimes would like to see all babies in all states screened for at least 34 health conditions. Many of these health conditions can be treated if found early. Each state decides which tests are required. You can find out which conditions your state screen for here.

Have questions? Email us at AskUs@marchofdimes.org.

Do you have questions? Ask us

Wednesday, August 9th, 2017

Have a question about becoming pregnant? Do you want to learn more about what to expect during your pregnancy? Is your baby in the NICU? Let us help.

Our Health Education Specialists provide women and families with evidence-based information about having a healthy pregnancy and reducing the risk of having a preterm birth. Our specialists have been answering questions from women and families since 1997.

How can you reach our specialists?

Our specialists can answer your questions in both English and Spanish. For English, text or email AskUs@marchofdimes.org. For Spanish, text or email preguntas@marchofdimes.org. You can also submit your questions through our website. Just complete our online form and one of our staff will respond within 2 business days.

Health Education Specialists all have master’s degrees in health fields such as public health, health science, nutrition and genetic counseling. We also have a certified lactation counselor on staff.

What information can our center provide?

Our specialists can provide information on many topics including:

  • starting a family
  • how to have a healthy pregnancy
  • pregnancy complication and risks
  • newborn health
  • prematurity
  • the NICU experience
  • lasting effects of prematurity
  • birth defects and special needs
  • pregnancy and infant loss.

If you are looking for information related to any of the topics listed, you’ve come to the right place. Reach out for resources and support. Our Health Education Specialists are here for you.

Getting ready for discharge from the NICU

Monday, July 31st, 2017

In general, your premature baby will be ready to go home around her due date. But your baby will have to reach certain milestones first. Her vital signsPreemie going home–temperature, breathing, heart rate, and blood pressure–must be consistently normal. This means that your baby:

  • Keeps herself warm
  • Sleeps in a crib, not an incubator
  • Weighs about 4 pounds or more
  • Has learned to breast- or bottle-feed
  • Breathes on her own

What can you do to get ready?

Make sure you talk to your baby’s health care provider and the NICU staff about caring for your baby at home. Here are some things to think about:

  • Do you have everything you need at home to take care of your baby? Do you have medicine and equipment your baby needs? Do you know how to give your baby medicine and use the equipment?
  • Are there any videos, classes, booklets or apps that may help you learn how to take care of your baby at home? Ask about taking a CPR class prior to bringing your baby home—knowing what to do in an emergency may make you feel more comfortable.
  • What do you want discharge day to be like? Do you want family or friends to be there when you and your baby get home? Or do you want it to be just you and your partner with your baby?

Many hospitals let parents “room in” with their baby for a night or two before going home. This can be a good way to practice taking care of your baby on your own while the NICU staff is still right there to help.

Car seat

You will be required to have a car seat before you leave the hospital. Preterm and low-birthweight infants have a higher chance of slowed breathing or heart rate while in a car seat. So your baby may need a “car seat test” before being discharged. The NICU staff will monitor your baby’s heart rate and breathing while she is in her car seat for 90 to 120 minutes. They may watch your baby even longer if your travel home is more than 2 hours.

Follow-up care

Make sure you have chosen a health care provider for your baby. You can choose a:

  • Pediatrician. This is a doctor who has special training to take care of babies and children.
  • Family practice doctor. This is a doctor who provides care for every member of a family.
  • Nurse practitioner. This is a registered nurse with advanced medical education and training.

If your baby has special medical needs, you may also need a provider who specializes in that condition. The NICU staff, hospital social worker or your baby’s general care provider can help you find someone.

Have questions? Send them AskUs@marchofdimes.org.

How does buying diapers support the March of Dimes?

Tuesday, July 11th, 2017

pampers photoToday’s guest post is written by Natalie Diaz, preemie mom, bestselling author of “What To Do When You’re Having Two” and founder of Twiniversity. Read her inspiring story below and how you can help support other families.

I’ve spent my share of time in the NICU; 31 days to be exact. Delivering my twins at exactly 34 weeks due to HELLP Syndrome (a variant of preeclampsia), my family got to learn the ins and outs of a section of the hospital I thought I would never want to visit, let alone stay in. In hindsight, the time I spent at the Mt. Sinai NICU in New York City was not only therapeutic for my twins, but life changing for me. The team there taught me more than I thought any new mom could learn; not just from the medical side of things, but also how to heal my heart emotionally after the trauma of an unexpected early delivery.

After the twins were born, I got involved with the March of Dimes. I participated in their “March for Babies” for years and raised money that went towards research, education, support, and advocacy to help preemie parents like myself. I know the only “cure” for my prenatal condition was the delivery of my twins, and perhaps just taking some literal steps could prevent that from happening to the next mom.

In 2009, I took my desire to help preemie twin parents a step further and launched Twiniversity. With over 60% of twin babies born prematurely, I wanted to offer a place online where families of twins could read about issues exclusive to our community and gain knowledge and insight, along with connections with other twin parents who’ve walked in their shoes. So not only could I support the March of Dimes during their annual walk, but now I could support families daily.

On July 11th, you can help support the March of Dimes without ever leaving your chair on Amazon’s Prime Day. Sign up for a new Pampers subscription on Amazon Prime Day and Pampers will donate $10 to the March of Dimes to support families with babies in the NICU – up to $160,000!

If you aren’t familiar with Prime Day, it’s an online shopping celebration exclusively for Amazon Prime Members, featuring amazing deals, exclusive opportunities, and now a way to give back. Not only can parents make sure their baby has the diapers they need at an affordable price by purchasing a Pampers subscription, but on Prime Day this purchase also provides information, expert advice, tools, and comfort for families with a sick or premature baby in the NICU as part of Pampers support of the March of Dimes.

Pampers will not just be making donations on Prime Day thanks to your subscriptions, but they will also host an hours long Facebook Live on the Pampers Facebook page, kicking off at 9am EST. With social media celebrity guests, real parents with real advice, and parenting experts, you can join the Prime Day party by tuning in and using the exclusive hashtag #Pampers4Preemies.

So join the Prime celebration, save money with Subscribe & Save, know your babies are covered with up to 12 hours of leak free protection from Pampers, and help support the March of Dimes all at the same time.

See you online on the 11th! I wouldn’t miss the Pampers Online Prime Day celebration for the world.

The March of Dimes does not endorse specific brands or products.

NICU dad x 2 – the story of Jack and Josie

Friday, June 16th, 2017

Kyle Daddio and son JackIf there is one father who can talk about being a NICU dad, it is Kyle Daddio.Kyle Daddio and daughter Josephine

His son, Jack, was born at 26 weeks, more than 3 months prematurely. His daughter Josephine “Josie” came along three years later, born at 26 weeks as well. Both babies weighed one and a half pounds at birth.

Jack spent 121 days in the NICU, while Josie clocked in at 91 days.

Fortunately, Jack is doing well now, and Josie has recently gone home from the NICU to join the family.

In honor of Father’s Day, we asked Kyle to share his feelings about being a NICU dad, and to offer tips to new dads going through a similar experience.

What was the hardest moment you experienced in the NICU? 

February 13th, 2014, when our son Jack was 7 weeks old. It was the worst day of my life. It was a Thursday and, like I had been doing every day, came into the NICU early in the morning before work to read the newspaper with Jack while he was in his isolette. On Monday evening of that week Jack’s nurse had noticed that his belly started to become distended and was concerned. They began pumping him with antibiotics, running tests and getting x-rays.

The result was that he had Necrotizing Enterocolitis, NEC, which is an infection in the bowels. By Thursday morning his condition had not improved and the NICU staff was doing everything they could not to have to perform surgery. On that Thursday morning while I was reading the paper with Jack, he flat-lined. I was rushed out of the room while all the nurses and doctors ran in. His stomach was so distended that his lungs did not have enough room to fully expand, and it eventually became too difficult for him to breathe even on a ventilator. I was let back in the room about 30 minutes later to see Jack on an oscillator. I called my wife Katie to come down to the hospital and the doctors notified us that surgery was now more possible.

When he flat-lined again at 2pm, surgery was now necessary and the surgeon came in to speak with us. He notified us that given Jack’s small size (2/1/2 lbs) they were unable to know exactly how severe the infection was, and that this type of surgery at his size, given his current condition, had a success rate of less than 50%. A nurse then approached Katie and I with some holy water and said “I read on your form that you’re Catholic. You should baptize your son now.” We baptized him, and then followed the nurses and doctors as they wheeled Jack into the operating wing.

In the hall approaching the OR, Jack flat-lined for a third time. They resuscitated him and brought him into the OR for surgery. At that point we had no idea what was going to happen. We went back down to the NICU family room and sat silently waiting for a report from the OR. Many of the NICU nurses came and sat with us during that time, which was an incredible gesture. After nearly 2 hours, a call came down from the OR that the surgery was successful and Jack would be back down to the NICU for recovery in an hour or so. They removed his sigmoid colon and gave him a colostomy bag. The surgeon later told us that from a surgical standpoint it was a very good situation. The infection was focused on a small area that could easily be removed and should not have long standing effects on Jack’s GI tract. He is now a happy and healthy 3 1/2 year old and has had no resulting issues.

As a father and husband, how did you take care of yourself as you were taking care of your family throughout this difficult period?

My one advice I always tell other dads is you have to cry. You have to process your emotions at some point otherwise you will never get through it. For me, it was most mornings in the shower. On the nights that we actually slept, I would wake up in the morning and think “how am I going to get through another day of this. This isn’t how it was supposed to go.” Once those emotions hit you, you can’t push them down, you have to let them out, otherwise you’re not helping yourself and its going to begin to affect those around you.

The second thing you should do is use your support system. We were lucky enough to have our family near when Jack was born in NY, and they were absolutely amazing. When Josie was born in Colorado, family began jumping on flights the second they got the news. My father arrived the day before we delivered and my mom and brother arrived the day she was born. They made sure we had nothing to worry about other than being at the NICU with our kids, and they were very good about taking us out to get our mind off of everything. Taking us out for dinner, taking us to the movies, anything to step away from everything for a few hours.

Any tips for new NICU dads on how to support your wife or partner during this process?

My wife takes care of everything in the house, so anything I could do to shorten that list was help to her. With our son Jack, he was born while we were visiting our family in NY, so we were living at my aunt and uncle’s house for the nearly 5 months while he was in the NICU. It was an incredible gesture for them to have us but it wasn’t home. So I traveled back to Chicago to get some items that would help with our everyday lives.

With our second trip to the NICU with Josie, we had our 3 year old son Jack at home, so spending time with him so that Katie could be at the hospital with Josie was my main focus. Jack had school every day and therapy in the afternoon 2 days a week, and I was lucky enough to be able to work from home for the first 2 months of Josie’s NICU stay and help with Jack.

The most important focus for me was to make sure that Katie was getting as much time as she needed with our baby at the hospital.

What’s some advice you wish you’d had when your baby was born prematurely?

Knowing the possibilities. What are the chances that our child could be born prematurely? Why could they be born prematurely? If they’re born prematurely, what are the risks and things that can happen in week 1, week 2, etc.? We had no knowledge of anything dealing with prematurity. We had never been introduced to the March of Dimes or knew anything they did with prematurity research. It wasn’t on our radar and so we never thought about it. Our doctors never spoke about it and we never thought we were at risk so why would it ever happen to us? We joke now that after 212 days in the NICU between our two kids that we have a full year of nursing school under our belts. I have learned things and seen things that I would never have thought of prior to this experience.

We want to thank Kyle for sharing his story and giving his advice. We wish him, other NICU dads, and all fathers, a wonderful Father’s Day.

Please feel free to send a message to Kyle and his family or to share your NICU story with us.

Thank you to all nurses!

Wednesday, May 10th, 2017

Nurse holding babyIf your baby was in the NICU, you most likely spent a great deal of time with her team of nurses. Likewise, if you had a difficult pregnancy, a nurse was probably by your side assisting you the whole way.

Nurses are critical in the care of mothers and babies. Many families who have had a baby born prematurely or with a health condition have told us just how fantastic the nursing staff was at their hospital. Nurses are hardworking, compassionate, highly educated professionals who work around the clock to ensure that you and your baby get the care you need.

In honor of National Nurse’s Week we want to thank all of the nurses that have impacted March of Dimes’ families. In particular, we wish to congratulate the four nurses who won the March of Dimes Graduate Nursing Scholarship Awards.

To recognize and promote excellence in nursing care of mothers and babies, the March of Dimes offers several $5,000 scholarships annually to registered nurses enrolled in graduate programs of maternal-child nursing. The March of Dimes Dr. Margaret C. Freda Graduate Nursing Scholarship Award was established in 2016 to honor long-time March of Dimes National Nurse Advisory Council Chair, volunteer, and friend, Dr. Margaret Comerford Freda. This award is given each year to the highest scoring graduate nursing scholarship applicant. Congratulations to our winners!

Did you have an amazing nurse that took care of you or your baby? How did he or she impact your NICU stay?

Share your story and help us thank all nurses for their unending dedication and incredibly hard work.

 

Why reading aloud to your baby is so important

Thursday, February 16th, 2017

AA baby mom dad brother in NICU.jpg.resizedDid you know that reading to your baby helps promote language skills? Science has shown that reading to your baby helps build vocabulary, speech, and later reading comprehension, literacy and overall intelligence. Yet, less than half of children under the age of 5 are read to every day.

Reading aloud to your child is such an important aspect of language development that the American Academy of Pediatrics (AAP) offers guidance on how to read to your child, including book suggestions for every age.

But what if your baby is in the NICU?

Even if your baby is in the Newborn Intensive Care Unit (NICU), it is still incredibly valuable to read to him. The March of Dimes is partnering with Jack and Jill of America, Inc. to provide books to families who have a baby in a NICU. Parents are encouraged to choose books and read to their babies as often as they can.

In this resource, the AAP explains “Why it is never too early to read with your baby.” They say: “When parents talk, read, and sing with their babies and toddlers, connections are formed in their young brains. These connections build language, literacy, and social–emotional skills at an important time in a young child’s development. These activities strengthen the bond between parent and child.”

Why start reading today?

Today is World Read Aloud Day, a perfect time to start a new routine of reading to your child.

If you’re not sure what to read, you can ask your local librarian in the children’s room. You can also acquire books for a home library at second hand stores or even recycling stations. The “dump” in the town where I raised my kids has a book shed where you can drop off or pick up used books for free. And don’t forget, garage or yard sales are great places to get books for nickels. Having a mini-library at home has been shown to help children get off on the right academic foot.

But perhaps the best reason to read to your child is because it brings you together. The snuggles and cuddles, laughter and silliness that may result from reading a wonderful book, brings happiness to both parent and child.

Whether it is in the NICU or at home, reading aloud to your child is one of the most powerful things you will ever do. So grab a book, snuggle up, and enjoy!

 

Is breastfeeding a preemie different than a full term baby?

Friday, February 3rd, 2017

preemieThe answer is yes.

You’ve probably spent the last few months anxiously getting ready for your baby’s arrival. You’ve probably also thought about and decided how you are going to feed your baby after birth. Unfortunately, your breastfeeding plans may need to change in order to accommodate your baby, if you gave birth prematurely (before 37 weeks of pregnancy).

Breastfeeding in the NICU

If your baby is in the NICU, you may need to start pumping to establish your milk supply. Although you won’t have your warm baby at your breast, give your baby any expressed colostrum or milk you produce. Breast milk provides many health benefits for all newborns, but especially for premature or sick babies in the NICU.

Read our tips and tricks to breastfeeding your baby in the NICU.

Late preterm babies

If your baby was born late preterm, between 34 weeks and 0 days and 36 weeks and 6 days of pregnancy,  the good news is that she may not need to spend any time in the NICU. The bad news is that breastfeeding a near-term baby can be very difficult. Late preemies are often very sleepy and lack the energy they need to latch, suck and swallow. Also, late preterm babies are vulnerable to hypothermia (low body temperature), hypoglycemia (low blood sugar), weight loss, slow weight gain and jaundice among other conditions, which may interrupt your breastfeeding progress.

Full term babies

Breastfeeding a full term baby has its challenges, too. But, compared to a preterm or late preterm baby, there are more opportunities to be successful with breastfeeding from the start, due to fewer health obstacles.

Stay positive

If your baby is spending time in the NICU or having trouble breastfeeding, the breast milk you provide your baby through expression or pumping is very beneficial to his growth and protection from illness and infection. Seek help when you need it through a Lactation Consultant, a nurse or your health care provider. If you are in the hospital, ask your nurse if they have a support group where you can connect and share with other moms going through the same situation.

Learn more in Breastfeeding 101.

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

 

Parent navigators – a lifeline for NICU moms and dads

Tuesday, January 17th, 2017

Preemie on oxygen.jpg resizedIf you’re the parent of a baby born prematurely, you know the stress and anxiety that is a part of having your baby in the Neonatal Intensive Care unit (NICU).  Even if the entire NICU staff is super supportive and answers your every question, you may still feel like you’re on an ocean in a life raft without oars or directions. The feeling can be overwhelmingly scary.

Then, once your baby is discharged from the NICU, you may begin a whole new journey of medical visits, specialists, therapies, and figuring out the complex world of health insurance. If your baby has special healthcare needs, these next steps may be confusing at best.

Enter Parent Navigation Programs. These are programs designed to assist parents of children with special healthcare needs. The hook is that parents are assisting parents. The parent navigators have been in their shoes, as they have children with special healthcare needs.

One of our NICU Family Support Partner hospitals, Children’s National Health System in Washington D.C., employs parent navigators to provide support to parents of children with complex medical conditions. They help the parents of newly diagnosed babies or young children navigate the complicated healthcare system to get the care their child needs and to access vital community resources. And, perhaps the best part is that these parent navigators provide the emotional support that only another parent of a special needs child can fully understand.

Children’s National started their Parent Navigator Program in 2008, and is now launching a new program aimed specifically towards parents of newborns in the NICU. These babies may be born prematurely (before 37 weeks of pregnancy), with complex medical conditions and/or with birth defects.

“This short-term, peer-to-peer “buddy” program looks to decrease stress, anxiety and depression in mothers of NICU babies during hospitalization” says Michelle Jiggetts, MD, MS, MBA, Program Administrator of the Complex Care Program and the Parent Navigator Program at Children’s National.

The success of this new program will be measured scientifically, by looking at the differences between parents who leave the NICU with a parent navigator, and those who do not. They will measure caregiver stress, anxiety and depression, as well as the amount of healthcare services a baby uses after leaving the NICU. The hope is that the group that had the benefit of a parent navigator for a year following their baby’s hospital discharge, will fare better overall – both parents and baby. You can learn more about this unique program, here.

According to Dr. Jiggetts, the parent navigator’s role is to:

  1. Provide peer-to-peer mentoring and support
  2. Link families to community resources and support groups
  3. Coach parents to be active partners and communicate effectively with health care providers
  4. Suggest useful tools (e.g. care notebooks) to help organize medical information
  5. Help families navigate the healthcare system and insurance issues
  6. Encourage families to focus on self-care

It seems like a no-brainer that a program like this will be incredibly helpful. As we all know, babies don’t come with instruction manuals, and infants with special healthcare needs have their own intense challenges. Having a peer “buddy” available to provide the low-down each step of the way must be a life-line that any parent would appreciate, but especially a parent of a preemie or baby with a health condition.

Even though you’re in a life raft on that ocean, you’ve now been given oars and a compass, and land is in sight.

 

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.