Posts Tagged ‘NICU’

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.

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.

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.

Table of contents for the delays and disabilities series

Wednesday, September 10th, 2014

If you are new to this series, or if you want to catch up on posts you may have missed, this is a good way to see all the posts in the series. They are grouped by topic to help you navigate your way.

Table of Contents

Why this blog series?
A new blog series is here

How to get early intervention and special education services
Babies and toddlers:

Understanding Preemie cues

Understanding developmental milestones and delays
Preemies- adjusted age and delays
Early intervention for babies and toddlers
What is an IFSP?
Guest post from the CDC on early intervention
Don’t delay with delays
How does your state define developmental delay?

Kids ages 3 and older:

Turning 3 – the leap from early intervention to special ed
Early intervention and special ed for children ages 3 and older
What is an IEP?
What are related services?
IEP or 504 – that is the question!
IEP reviews in April
IEPs on TV
April is IEP month
What is Prior Written Notice or “PWN?”
IEPs and LREs – the nitty gritty
An easy way to find resources for kids with special needs
Summer programs for kids with special needs
Delays, disabilities and the law
Learning the lingo
Words and terms – a whole new world
Changing a program for a child with special needs
What is peer-reviewed research?
Keeping track of your child’s records

The special language of special needs

Good-bye NICHCY. Hello CPIR.

Pediatric medical specialties

What are pediatric specialties?
Finding pediatric specialists
What is a Developmental Behavioral Pediatrician?
What is a child psychologist?

Therapies and Treatments

What is physical therapy or “PT”?
What is occupational therapy, or “OT”?
What is speech therapy?
What are hippotherapy and therapeutic riding (THR)?
What are recreation services?
Kids with challenges zoom on souped up kiddie cars

Sensory issues

Sensory difficulties in children
Everyday tips for dealing with sensory special kids
Help for sensory issues
Fireworks are not fun for kids with sensitive hearing
Sensory friendly malls

Halloween ideas for kids with food allergies or sensory challenges

Heavy backpacks hurt- Here’s how to lighten the load

Understanding the diagnosis

Preemies and hearing loss
Did you hear me? What is Auditory Processing Disorder (APD)?
What are learning disabilities (LDS)?
LDs – What they ARE and are NOT
What is dyslexia?
What is dyscalculia?
What is dysgraphia?
What is dyspraxia?

Coping – day in and day out

Staying positive in the NICU

Medication mistakes are common
It’s good – no, great – to read to your baby
Avoiding and handling tantrums
More resources for handling meltdowns
Positive reinforcement – the power of one M&M’s® candy
Positive reinforcement – fortune cookie advice

Flu can be serious for kids with special needs

Flu is dangerous for certain people

Can sleep affect your child with special needs…or you?
A social skills tip for kids with special needs

Apps for math LD and other disabilities
There’s an app for that (for kids with learning challenges)

Getting through transitions, holidays, vacations and disasters

A transition tip
Bracing for the holidays

Taking Thanksgiving in stride
Holidays :) or :(
Adjusting to life after the holidays

Getting back in the swing (after a holiday)
Let it go! Let it go! Let it go! (an inspirational holiday poem)
Vacationing with your child with special needs
Accommodations help vacationers with special needs
Re-entry: life after vacation
Summer to September
From summer to school – the big transition
Back to school is hard on kids and PARENTS!
Shopping for toys for kids with special needs

Toys glorious toys! (for kids with special needs)
Preparing for disasters when you have a child with special needs

Surviving and thriving – Your child with special needs, your other children, and YOU

Special moms need special care
Caring for the caretaker – put on your oxygen mask
Caring for the siblings of a child with special needs
Do siblings of children with disabilities need help?
Laughter helps your body, mind and mood
It’s a marathon, not a sprint

Resilience. When struggles can be a good thing.

Brace yourself: the ShareUnion message

You can also see all of the blog posts by clicking on Help for Your Child under “Categories” on the menu. Scroll down to read the blog posts in reverse chronological order. If you have comments or questions, please send them to AskUs@marchofdimes.org. We welcome your input!

Breastfeeding your baby in the NICU can be challenging

Monday, August 4th, 2014

feeding in the NICUMost babies, even those born very premature can learn to breastfeed. Breast milk provides many health benefits for all newborns, but especially for premature or sick babies in the NICU. Feeding a preemie may be much different than what you had planned. If you must pump, you may feel disappointed that you are not able to feed your warm baby on your breast. But, providing breast milk for your preemie is something special and beneficial that you can give him.

Here are tips to help you breastfeed your preemie while in the NICU.

If your baby is unable to feed or latch:

• Start pumping as soon as you can to establish your milk supply. Ask a nurse for a pump and assistance.

• If your preemie is tube feeding, your baby’s nurse can show you how to give your baby his feedings.

• Pump frequently, every 2 to 2-1/2 hours around the clock for a couple of days and nights (or 8 to 12 times during the day, so you can catch some sleep at night).

• Practice skin to skin or kangaroo care if your nurse says it is ok. Both are beneficial, even if your baby is connected to machines and tubes.

If your baby is able to suckle:

• Ask to feed him in a quiet, darkened room, away from the beeping machines and bright lights.

• Many mothers find the cross cradle position very helpful for feedings. Start with kangaroo care. Then position the baby across your lap, turned in towards you, chest to chest. Use a pillow to bring him to the level of your breast if you need to.

• Preemies need many opportunities at the breast to develop feeding skills regardless of gestational age. This requires practice and patience.

• You may need increased support to breastfeed your preemie. Look for support from your nurses, the hospital’s lactation consultant, friends or family.

Not every tip will work for every mom. Try to find the feeding methods and solutions that work best for you and your preemie. More information on how to feed your baby in the NICU can be found here.

If you have questions about how to feed your baby, email us at AskUs@marchofdimes.org.

Thanks for your support!

Monday, April 28th, 2014

marching feetHundreds of thousands of you joined us this weekend for March for Babies! We had great success, lots of fun, met new people and old friends. To all of you who participated, in person or through a donation, we sincerely thank you for your support.

Preemie chats this weekend

Friday, November 15th, 2013

wpd2013

This is Prematurity Awareness weekend and we’ll be involved in chats on both Saturday and Sunday. Join us on Saturday as part of the day-long World Prematurity Network relay. We will be talking about parenting in the NICU at 1 PM ET. Make sure you use #worldprematurityday to fully engage.

On Sunday, which is actually World Prematurity Day, we will be discussing and sharing birth stories. Please come share your unique story with us throughout the afternoon. We can learn a lot from each other. Use #birthstories to be included in the thread.

We look forward to seeing you with us.

Going home after the NICU

Tuesday, November 12th, 2013

mom-and-preemieOne in every nine babies in the U.S. is born prematurely and most spend some time in the neonatal intensive care unit (NICU). Life isn’t easy for them or their parents.

Join our chat about what it’s like once you bring your baby home from the NICU, the challenges, the fears, the daily miracles, the joy. Our guest will be Amanda Farr Knickerbocker, @Micropreemie, mom to a micropreemie & creator of the amazing site understandingprematurity.com.

Please join us on Thursday Nov. 14th at 1 PM ET. Share your story, ask questions. Be sure to use #nicuchat to fully participate.