The NICU–what you need to know

Having 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.

Tags: NICU, NICU Family Support, premature baby, Share Your Story

Happy Holidays from the MDNCA March of Dimes!

Wind chill, hypothermia and frostbite, oh my

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

Wind Chill

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

Frostbite

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

Hypothermia

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

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

 

Tags: frostbite, heat loss, hypothermia, staying warm, wind chill, winter safety, winter season

Visiting Santa is do-able for kids with special needs

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

The good news

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

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

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

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

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

 

Note:  This post is part of the weekly series Delays and Disabilities – How to get help for your child. It was started in January 2013 and appears every Wednesday. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also view a Table of Contents of prior posts.

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

Tags: calm, Caring, holidays, Santa, sensitive, sensory challenges, Special needs

Keeping you and your baby warm in winter

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

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

Listen to weather forecasts -

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

Layer it on -

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

Limit time outside-

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

Stay healthy through the cold weather-

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

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

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

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

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

Tags: snow, staying healthy, staying warm, staying warm in winter, winter clothing, winter sports

Meet the Mathenys

In 2012, my wife Jamie Matheny was diagnosed with preeclampsia while 32 weeks pregnant with our first child. Her blood pressure started to rise, her ankles swelled, and she released a significant amount of protein in her urine. Once this was known, she was transported via ambulance from Calvert Memorial Hospital to John Hopkins Bayview. She was medicated for two days. Then on December 13, 2012, Kylie Marie Matheny was born weighing 2lbs. 14oz. She was in the NICU for 33 days with only one significant episode. One morning, we had to authorize a spinal tap at 3am because Kylie wasn’t doing well. It was an extremely stressful and trying time for us. We lived two hours away and had to work out the logistics of getting breast milk to the NICU. Friends housed us some nights. The Hopkins Children’s House accommodated us others.  

Kylie turns two on Saturday, and she is doing great. We enrolled her in the infants and toddler program when she came home. She’s exceeded expectations in all assessment areas. We always wanted two children but were uncertain of the risk due to Jamie’s preeclampsia. Various physicians had different opinions. One said the risk was 10-20%, and we decided to give it another try. After Jamie got pregnant, a high risk doctor stated the probability of her preeclampsia returning was around 60%.

Jamie started showing signs of preeclampsia again. She had high blood pressure, slightly elevated signs of protein in her urine, no swelling. She was put on bed rest, a special diet and was closely monitored. A checkup yielded that Jamie’s biophysical and cord doppler were abnormal, and the baby was not moving. Jamie’s OB determined immediately that the baby had to be delivered via emergency cesarean as the baby was in fetal distress. Once we arrived at Hopkins Bayview, Jamie was immediately rushed to the Operating Room. There, she developed eclampsia as her blood pressure levels spiked to 220/110. I was in the OR with her. Gavin was delivered, and Jamie’s blood pressure levels dropped immediately. She had a seizure, which lasted roughly 40 seconds while she was still being operated on. She eventually stabilized and the operation completed. She was monitored in the ICU that evening. Gavin had a hard time breathing on his own. He too had blood pressure and malnourishment issues. He was taken to the NICU, intubated and stabilized. Ironically, Gavin Michael Matheny was born on November 17, 2014 -- World Prematurity Day ☺. He weighed 1lb. 15oz. His gestational age was 26w2d +/- 1w6d.

Gavin is doing great now at Hopkins Bayview! He started feedings and just got off of antibiotics. He lost an ounce but just gained one back. He’s a fighter and makes us very proud. I’m extremely proud of my beautiful wife who stayed very strong throughout this process. She thinks that she’s somehow to blame, and I reassure her daily that is not the case. I thought I was going to lose her and my son, all at the same time, there in that operating room. The feeling is very weird the second time around. You know what to do or how to react but you still don’t know what to expect. You live day to day, and you’re thankful for every moment within that day.  

Not much is known about preeclampsia and/or eclampsia and why it occurs. Jamie’s symptoms were different the first time versus the second, which caused a different response to the condition. Her condition was worse the second time. We’re left with a lot of questions. Is the condition genetic? Environmental? This is a prime example of the importance of the March of Dimes Prematurity Research Centers, where researchers are working tirelessly to uncover the causes of premature birth.

Are you at risk for premature birth?

Have you had a premature baby in the past? Are you pregnant with twins or other multiples? Do you have problems with your cervix or uterus?  If so, you are more likely to give birth early.

We often get questions from women wondering whether they are at risk to have a premature baby. What makes some women give birth early? We don’t always know what causes preterm labor and premature birth. However, there are some things that we do know make it more likely. These things are called risk factors. Having a risk factor doesn’t mean that you will definitely have preterm labor or give birth early. But it may increase your chances.

These three risk factors make you most likely to have preterm labor and give birth early:
1. Prior premature birth: You’ve had a premature baby in the past.
2. Multiples: You’re pregnant with twins, triplets or more.
3. Cervical or uterine problems: Problems with the structure or function of your cervix or uterus.

Some other risk factors include:

Family history: This means someone in your family (like your mother, grandmother or sister) has had a premature baby. If you were born prematurely, you’re more likely than others to give birth early.

Weight: Being underweight or overweight before pregnancy or not gaining enough weight during pregnancy.

Maternal health conditions, including:
o High blood pressure and preeclampsia
o Diabetes
o Thrombophilias (blood clotting disorders)
o Certain infections during pregnancy, like a sexually transmitted disease (STD) or other infections of the uterus, urinary tract or vagina.

Smoking: Babies born to women who smoke during pregnancy are more likely than babies born to nonsmokers to be born prematurely.

Stress: High levels of stress that continue for a long time may cause health problems.

Maternal age: Being younger than 17 or older than 35 makes you more likely than other women to give birth early.

Race/ethnicity: We don’t know why race plays a role in premature birth; researchers are working to learn more about it.   In the United States, black women are more likely to give birth early, followed by Native American and Hispanic moms.

These are just a few of the risk factors for preterm labor or premature birth. You can see a complete list on our website.

There are some things that ALL women can do to reduce their risk of preterm labor and premature birth:
• Don’t smoke, drink alcohol or take street drugs.
• Make sure you go to all your prenatal care appointments, even if you’re feeling fine. This allows your doctor to detect any problems early.
• Try to get to a healthy weight before your get pregnant. Once you are pregnant, ask your doctor how much weight you should gain.
• Make sure any chronic health conditions are being treated and are under control.
• Protect yourself from infections by washing your hands with soap and water. Know what foods to avoid during pregnancy. Have safe sex. Don’t touch cat feces (waste).
• Try to reduce stress. Make sure you ask for help from family and friends.
• Once you have had your baby, it is best to wait at least 18 to 23 months before getting pregnant again. And make sure you schedule a preconception checkup before your next pregnancy.

If you have concerns about whether you may be at risk for giving birth early, see your health care provider. With guidance and care, you will have a better chance of having a healthy pregnancy.

Have questions? Send them to our health education specialists at AskUs@marchofdimes.org.

 

Tags: premature birth, preterm labor, risk factors for premature birth

Staying positive in the NICU

Having a baby in the NICU is stressful. Very stressful. When a baby is born prematurely, the roller coaster ride of the NICU experience is emotionally, physically and mentally taxing for parents.

Premature birth is the birth of a baby before 37 weeks of pregnancy. One in 9 babies is born prematurely, or 15 million babies globally! Of these babies, one million will die. Babies who survive often have lifelong health problems such as cerebral palsy, vision and hearing loss, intellectual disabilities and learning problems. Just knowing these statistics provokes anxiety and worry in parents. If you are a parent with a baby in the NICU, observing the ups and downs of your baby’s progress day to day can be heart wrenching and particularly wearing.

Depression more common in the NICU

Studies have shown that “in the month after delivery, parents of preemies are significantly more depressed and anxious than parents of term babies,” according to Linden, Paroli and Doron MD in the book Preemies – The Essential Guide for Parents of Premature Babies, 2nd Edition. The authors report that “Besides depression and anxiety, they (parents) were more apt to feel hostile, guilty, and incompetent at parenting and to isolate themselves socially…An early delivery is itself so scary that even many parents of healthy preemies react with shock and anxiety.” Given the stress associated with seeing your baby in the hospital, and the ups and downs of slow progress – it is not hard to imagine that depression is seen more often in parents of preemies than in parents of children born at term.

Many new mothers experience the “postpartum blues” or the “baby blues.” Baby blues are feelings of sadness you may have three to five days after having a baby. These feelings most likely are caused by all the hormones in your body right after pregnancy. You may feel sad or cranky, and you may cry a lot. By about 10 days after the baby’s birth, the baby blues should go away. If they don’t, tell your health care provider who will determine if you may have postpartum depression (PPD), which lasts longer and is more serious than baby blues.

Signs of PPD include feeling tired all the time, having no interest in your usual activities, gaining or losing weight, changing your eating habits, having trouble sleeping or concentrating, and thinking about suicide or death. If you have five or more of these signs and they last for two weeks or longer, you may have PPD. Sometimes mothers of preemies develop postpartum depression as a result of the severe stress and anxiety experienced by having a premature baby. Even fathers of preemies can become depressed.

What can help?

There are many ways to feel better.  Treatments for depression may include all or some of the following: healthy eating, regular sleep and exercise, talking with friends, family or a professional counselor/therapist, lowering your stress by taking time to relax and avoiding alcohol. In addition, your health care provider may give you medication specifically designed to help with depression.

Talking to other parents who have gone through the NICU journey can be very helpful. The parents on the March of Dimes’ online community, Share Your Story, “talk” to one another and share their experiences. It is a comforting and supportive community, where all NICU families are welcomed.

When will you feel better?

The length of time a parent feels down, anxious or depressed can vary, and may depend on the health of your baby, and the length of NICU stay. But usually, parents of preemies begin to feel more balanced as their baby grows, and “by the end of the baby’s first year, their psychological distress, on average, has been found to be similar to those of mothers of term babies” according to the Preemies book. But, each baby and NICU stay is unique, so each parent’s journey to feeling better is unique.

Bottom line

Having a baby in the NICU is extraordinarily stressful and difficult. You need to take care of yourself in order to be able to take care of your baby. It is important to be aware of the signs or symptoms of depression and to speak with your health care provider if you have any concerns at all.

The sooner you seek help, the sooner you will feel better.

 

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January 2013 and appears every Wednesday. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also view the Table of Contents of prior posts.

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

Tags: anxiety, baby blues, coping, depression, fathers, hospital, NICU, Parents, postpartum depression, preemie, prematurity, Special needs, stress

Understanding preemie cues

For parents, seeing your little one in the hospital, hooked up to tubes and machines can be scary and overwhelming. We want the best for our children, and it can be unbearable to wonder if your baby is in pain or uncomfortable. Worrying comes naturally, especially when your baby can’t talk and tell you how she is doing. But did you know that babies have certain expressions and behaviors or “cues” that can tell you a lot about how she is feeling? By observing your preemie, she will give you signals that tell you if she is happy, sleepy, in pain, or ready to interact with you.

Learn your baby’s behaviors

Here are a few cues that may help you understand your baby better:

• Happy and content – A calm baby will have relaxed arms, legs and face, stable breathing, an even skin color, and may look around.

• Stressed – Her fingers may splay out wide, she will frown or grimace. Her breathing may increase and her skin become blotchy or pale. She may arch her back or neck, cry and even suddenly become limp or fall asleep.

• Self-soothing – Your baby will try to soothe herself by sucking on her fingers, grasping something (like your finger or a blanket), put her hands on her face or clasp her hands together.

Your preemie’s cues will tell you what she needs. For example, if your baby is stressed, she may be getting too much stimulation. The stimulation can come from too much sound, light or even the combination of being touched AND spoken to at the same time. According to authors Linden, Paroli and Doron in Preemies – the Essential Guide for Parents of Premature Babies, 2nd Edition, “a premature baby is less able to shut out stimuli and to calm herself down after being disturbed.”

What can you do?

Ask the NICU nurse how to comfort your baby. For example, if your baby arches her back, hold back or change your touch. See whether she calms when you cup her head and feet with your hands.

If your baby turns toward you, offer her eye contact or a gentle voice — or both. If she turns away when you talk but toward you when you sing, she’s showing a preference for that kind of voice. Keep in mind that some preemies can only process one stimulus at a time. She may like and respond to touch but not touch in combination with your voice.

Your premature baby’s cues will change as she gets older. As you get to know your baby, you will be amazed at how well you interpret her movements and expressions, and understand how she is feeling or what she wants.

By knowing infant cues, you can learn how to connect with your baby, and respond to her needs. Hopefully, knowing how your baby is feeling will help you to relax and not worry so much.

Source: Preemies- The Essential Guide for Parents of Premature Babies, 2nd Edition, by Linden, Paroli and Doron, 2010.

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January 2013 and appears every Wednesday. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also view the Table of Contents of prior posts.

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

Tags: behavior, NICU, pain, preemie cues, prematurity, worry