Posts Tagged ‘prematurity’

From NICU to EI services

Wednesday, February 18th, 2015

preemie hand in adult handIf your baby was born prematurely or at a low birth weight, chances are he or she may benefit from Early Intervention (EI) services. EI services are designed to help your baby catch up developmentally. They can include speech, physical or occupational therapy, as well as other kinds of treatment.

Usually, the hospital NICU staff will give you the information to have your baby screened or evaluated so that services may begin soon after your baby gets home (if they are needed). But, parents – you should know that a doctor or hospital referral is not needed to start the process of requesting early intervention services. You can contact your state’s agency yourself. Although it is very helpful for hospitals to give parents all of the information they need to get services started early, a hospital referral is not a requirement for a screening.

Read this post on Early intervention for babies and toddlers to learn how to request a screening. In many cases, a phone call to your state’s early intervention program is all you need to initiate an evaluation (which is free of charge to you). EI services are available in every state and territory of the United States.

Don’t delay with delays. The sooner your baby gets help, the sooner he can start catching up. If you are concerned about your baby’s development, make the call, get the free screening, and put your mind at rest.

See other topics in the Delays and Disabilities series here.

Passing the time while your baby is in the NICU

Friday, February 13th, 2015

Passing the time while your baby is in the NICUIt may be difficult to know what to do with your time when your baby is in the NICU. Going home to an empty house may seem impossible. All you can think about is how your little one is doing. However, there are all kinds of productive things you can do, to pass the time until your baby is ready to come home.

While at the hospital

• Learn about your baby’s condition as well as what to expect on the NICU journey.
• Get to know your baby. As soon as your baby’s condition allows, take an active role in his care. Feed, hold, bathe, diaper and dress your baby. Learn about preemie cues to help you understand your baby’s behaviors.
• Room-in with your baby. Some hospitals (depending on your baby’s condition) will allow you to spend the night caring for baby. Ask your nurse if this is an option.
• Read to your baby
• Learn how to take care of your other children while your baby is in the NICU. See if they can visit your baby in the NICU.
• Is a holiday coming up? Read our blog on spending the holidays in the NICU for tips.

While at home

• Get the right car seat for your child.
• Prepare your home for your preemie.
• Make sure you have food in the house or ask a friend or relative to get some groceries for you. Eating healthy foods will help you maintain your energy.
• Keep up with your chores; ask a relative or friend to help if you need it.
• Visit our website for information on managing the NICU experience.

Relax and rejuvenate

• Put your feet up. You need to take care of yourself in order to be able to take care of your baby.
• Take a nap: Getting enough rest is important during this time.
• Be active.  A short 10 minute walk once or twice a day will be more beneficial to you than you can imagine. If you can manage a longer walk, go for it. Or, join a class (like Zumba) where you can dance off your frustrations as you have fun.
• Take a yoga, meditation or a stretch and tone class or use a DVD. You can take them out of a library for free. These classes combine getting in shape with learning to calm down. Believe it or not, most people need to learn how to relax.

While at home or by your baby’s side, seek support by visiting Share Your Story®, the March of Dimes online community for NICU families. You will be welcomed and comforted by other NICU moms who are or have been in your situation and know how you are feeling.

Do you have a baby in the NICU? Email us at Askus@marchofdimes.org with your questions. We are here to help.

Sibling visits to the NICU can be helpful

Wednesday, February 4th, 2015

Sibling visits baby in NICUPrematurity affects everyone, including siblings. When older children have a sister or brother in the NICU (neonatal intensive care unit) they sense their parents’ concern and worry, and their lives are thrown off balance. Siblings of a preemies go through their own NICU journey of sorts – from experiencing anxiety, worry and frustration to happiness and joy. However, there are some steps you can take to help your older children through the ups and downs of the NICU experience.

If your baby is in the NICU, it may be possible for your other children to visit. Ask the head nurse of the NICU if the hospital allows this and if your preemie is strong enough for the visit. Often, seeing their baby brother or sister in the NICU helps older children understand what is happening and to realize why mom and dad are not home as much. Even a short visit can help put the situation into perspective. Visiting can also make siblings feel like they are a part of the journey and that they are helping out.

But, NICUs can seem scary to children, and seeing a tiny baby hooked up to monitors and tubes can be terrifying. Here are ideas (some from the Preemies book) to help make the visit successful. In all cases, get the permission of the NICU staff first:

• Have your older children send in a toy or drawing ahead of the visit, and display it prominently near your preemie’s bed. When your children arrive, they will see their presence and will feel an immediate connection.

• Describe your baby’s condition to your children before the visit. Perhaps show them a doll that is about the size of your preemie, so they are not too surprised when they see their tiny sibling.

• If it is possible, allow your children to touch the baby. Touch helps to establish a bond. Of course, the NICU nurse will tell you if this will be allowed or not, depending on your baby’s current medical condition.

• Ask if your children can talk, read a book, or sing a song to the baby (softly). It will give them the feeling of doing something positive to help.

• Ask if your hospital has a NICU Family Support Program. The March of Dimes partners with many hospitals in the United States. Such programs comfort and support families, including siblings. Some hospitals also have a corner where siblings can play as they wait while their parents visit. They may even meet other siblings in this play space, and be able to share their feelings with other kids who understand what they are experiencing.

There is no doubt about it – having a baby in the NICU is a difficult journey for the whole family. Hopefully, short visits will help your other children to understand, feel included and “help out”, which will in turn, lessen the mystery of having a little brother or sister in the NICU.

Additional information and support for families with babies in the NICU can be found at Share Your Story, the March of Dimes online community for NICU families. Also, see this blog post for helpful info on a father’s role in the NICU.

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 Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). You can also view a Table of Contents of prior posts. We welcome your comments and input.

If you have questions, please send them to AskUs@marchofdimes.org.

Does your baby have the right car seat?

Monday, February 2nd, 2015

rear-facing car seatFinding the right car seat can be a challenge. There are so many different kinds and sizes, how do you know which car seat is right for your child’s age and weight? What should you do if you have a baby born prematurely? This guide can help:

Step 1: Find the right car seat

• Should you get a rear facing car seat? Forward facing? Booster seat? Click here to learn the kind you need as your child grows. This handy visual guide is also helpful; just click on each box for details.
• Next, find a car seat based on your child’s height and weight.
• Car seats are also rated on ease of use. This info may be helpful to narrow down the kind of seat to buy.

Step 2: Correctly install your car seat

A car seat that is not installed correctly can be hazardous to your child.

• Learn proper car seat installation based on the kind of seat you have.
• Click here to learn about the inch test and pinch test – two simple ways to see if the seat is installed properly.
• And, did you know child seat safety inspectors can check your child’s car seat to make sure it is safely installed? (I didn’t!) Check it out.

Step 3: Register your car seat

• You can receive updates and notices about possible recalls by registering your car seat. Here’s how.

Preemies and tiny babies

If you have a premature or low birth weight baby, take time to read these special recommendations and our blog post on tips for tiny babies.

The right car seat, installed and used correctly is a MUST to keep your child safe.

Spending holidays in the NICU

Friday, December 19th, 2014

Parents in NICU If your baby is currently in the NICU, this may not be how you envisioned spending your holidays. The realization that your baby is not home for Hanukkah, Christmas or the start of the New Year can be a real jolt. But, with a little creativity, an open mind and a willingness to adapt, you can still make your holidays bright. Here’s how:

• Although no two NICUs are exactly alike, many will allow you to decorate your baby’s bed space (but ask first). You may be able to attach pictures or tiny holiday decorations on the side of the incubator or warmer bed.

• Engage your other children if you have them. You can take a photo of them and pin it up on the side of your baby’s bed (if allowed). Likewise, take a photo of your baby and bring it to your child or children at home to decorate. They can make a Christmas ornament out of it and hang it on the tree or draw a picture around it and set it up next to the menorah. This way, your littlest one is always present at your home in a physical way.

• If your baby is healthy enough, see if you can put him in a special holiday outfit. A snowman, Santa or elf onesie would be adorable! (But be sure to check with the head nurse or doctor first.)

• Depending on the health of your baby and NICU rules, perhaps Dad can pose as Santa and take a photo with your baby. (Be sure the Santa outfit is squeaky clean please!)

• Place a tiny “Charlie Brown” tree, menorah or other symbolic decoration on the windowsill or counter next to your baby.

• If appropriate, see if you can play soft holiday music when visiting your baby. Humming or singing to your baby may be soothing to him and in this way you can introduce him to his first Christmas Carol or Hanukkah song.

• Make a clay impression of your baby’s foot as a keepsake. There are kits that you can buy that are easy to prepare. Or, if you have a creative streak in you, you can make the “dough” yourself. Search the internet for recipes.

• Enjoy your New Year’s toast together as a family in the NICU with your baby, even if you do it well before midnight to accommodate bedtimes of your other children.

Spending your holidays at the NICU is not something you planned on. But, hopefully, the New Year will be one of improved health, weight gain for your preemie, and a soon-to-be united family at home.

 

Note:  This post is part of the weekly series Delays and Disabilities – How to get help for your child. 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.

Toys glorious toys!

Wednesday, December 10th, 2014

playing with toysAt one time, parents did not have many options to find appropriate toys for a child with a disability or developmental challenge. Nowadays, it is possible to find just the right kind of toy for your child’s individual needs. She can play at her own level and be a very happy camper.

What child does not love toys? It seems to me that the word “toy” is synonymous with “child.” It is hard to separate the two. At this time of year, there is a seemingly endless variety of toys available. Yet, for parents of a child with special needs, it can seem hard to find toys that are appropriate for your child’s condition.

Fortunately, a simple internet search for “toys for kids with special needs” will yield multiple sites that feature toys for children with physical or cognitive challenges, speech and developmental delays, hearing or vision impairments, sensory disorders, issues related to autism and learning disabilities. You can find everything from sensory swings to board games with larger print. You will not be at a loss to find the right toy for your little one.

When searching for toys by age group, remember to keep your child’s adjusted age in mind if he was born prematurely. And, see this post for other tips on shopping for toys kids with special needs.

This year, let your fingers do the searching and find the perfect gift for your child with special needs. The hours of fun your child gets from a toy that is right for him will give you hours of joy!

 

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.

We’re thankful for you

Friday, November 28th, 2014

ESBldg_2014newsdeskHere at News Moms Need, we’re grateful for so many things this year–especially all of you. Thanks so much to all of you who helped us make this year’s Prematurity Awareness Month such a success. Many of you shared your stories with us and others so that everyone could have a better understanding of how premature birth affects us all. We’re very grateful for your energy and support.

To all of you and your families, our thanks and best wishes. And make sure to check out our Facebook page to see images of how World Prematurity Day was celebrated around the globe.

Understanding preemie cues

Wednesday, November 19th, 2014

preemie handFor 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.

Time to chat about World Prematurity Day

Friday, November 14th, 2014

globeCome one…come all tweeters for the #WorldPrematurityDay 24-hour Twitter Relay beginning on November 13 at 7 PM EDT and ending November 14 at 8 PM EDT.  Join 28 global partners and friends from around the world, including member organizations from our World Prematurity Network, to commemorate World Prematurity Day and drive awareness to the issue of preterm birth.

The March of Dimes will tweet about preterm birth @modhealthtalk by hosting an hour on November 14 at 1 PM EDT on “Parenting in the NICU.”  Please join us, retweet, offer your tweets about your activities for #WorldPrematurityDay and help us surpass this year’s goal of reaching over 30 million people on Twitter!

Staying positive in the NICU

Wednesday, November 12th, 2014

parents in the NICUHaving 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.