Family Team News

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Monday, March 9, 2015

Passing the time while your baby is in the NICU

It 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.

Wednesday, March 4, 2015

Why We Walk Wednesday: The Craft Family

In 2011, we had our identical twin boys at 27 weeks. Quintin was born naturally, and Carter was via emergency c-section. Both weighed 2 pounds, 11 ounces. I didn’t get to meet them for 24 hours. Both had brain bleeds, feeding problems, heart problems, jaundice, needed help breathing, and needed frequent blood transfusions. At 2 weeks old Quintin was diagnosed with a disease called NEC, a disease primarily seen in premature babies. Upon receiving the news, Sara from March of Dimes NICU Family Support Program was there to hold our hand. About this time, I started attending a scrapbook club, through the March of Dimes. 
Two weeks later, our doctor said that they needed to operate. With a positive mindset and lots of prayer, we waited for our little boy to come out of surgery. A nurse took us into a private room, “It isn’t good news. I’m sorry,” she said. When the surgeon came to speak with us, he held my hand and cried with us. Again, there was Sara asking if we wanted to speak with someone who had been through a similar situation. In the same room, 24 hours later, we held our baby boy for his last breath, surrounded by love. Sara found us and cried with us. This hug from her was one I will never forget. She helped me complete our scrapbook, It was difficult to be around the other moms, some of whom would talk about their twins. This scrapbook is one of the most precious things we will ever own.

Information both verbally and on paper was given to us, as was a support group to help us acclimate and get through our life in the NICU. And it was our life, for 2 months. We continued to spend time with and be positive for our survivor, Carter. He stayed another month in the NICU before we were able to bring him home on a monitor. 
Even now after having my rainbow baby, I worry that something bad will happen. Many of you may tell yourselves, that we were lucky because in the end, we were able to have one of our boys. Trust me, I know, but I think about how I should have two identical boys running around every day of my life. Carter is the light of our lives. Since starting my journey with the March of Dimes, I've met many moms with similar stories, some seem hard to imagine possible. Having a baby die so young, means we may not have any memories, besides their silent birth. But, coming together for something like March for Babies allows us to not only band together for support and to help other families dealing with premature birth, it also gives us a new memory we can share with our lost babies. Crazy it may seem, I see a butterfly on my March for Babies walk every year. Quintin is with us. All of our babies are with us. Their memory stays alive with these events, and by talking about them. 
We hope to turn a negative event in our family’s life into a positive act for others. Walking with the March of Dimes gives us an outlet. A way of raising funds to help ensure that someday all families get to hold their babies, go home with their babies and that these babies have the best chance of survival. Sometimes, we have to go out and make silver linings for obstacles in our lives, which is why we walk with the March of Dimes. 

Monday, March 2, 2015

March 3rd is the first ever World Birth Defects Day

Families frequently write to the March of Dimes and share a story about their child’s struggle with a birth defect. Often, they ask what else they can do to help raise awareness. Well, here is a great way to get involved.

Help us mark the first World Birth Defects Day by participating in social media activities and sharing a story about the impact of birth defects on you and your family.
The March of Dimes and 11 other international organizations, including the CDC and the WHO, have created the first-ever World Birth Defects Day on March 3rd. We hope to raise awareness of this serious global problem and advocate for more prevention, care and research to help babies and children.

Birth defects affect 1 in 33 infants worldwide. Half of these birth defects will be detected soon after birth; the other half will be diagnosed during the first year of life. Birth defects are a major cause of death in infants and young children. Babies who survive are at an increased risk for life-long disabilities.
We need you.

On March 3rd, share your story about the impact of birth defects on you, your child or someone you know. With our partners, we’ll be urging governments, non-governmental organizations, policymakers, researchers, and health care providers around the world to help us work together toward a healthier future for children.
What can you do?

1.  Post an announcement on your blog, Facebook, Twitter or other social media platform.
2.  Register to be a part of the World Birth Defects Day Thunderclap. A message will be sent out at 9:00 a.m. EST on March 3 to help raise awareness.
3.  Join the Buzzday on Twitter on March 3rd. Plan to send one or more messages using the #WorldBDDay tag at some point during the day. Retweet both promotional and day-of messages to build our buzz for the day.

We look forward to having you join the conversation. Together, we can make strides to improve knowledge and raise awareness.
For more information, email AskUs@marchofdimes.org. See other topics in the series on Delays and Disabilities- How to get help for your child, here.

Monday, February 23, 2015

Pregnancy in women with congenital heart disease

Most women who have congenital heart disease and decide to get pregnant will have a safe pregnancy with minimal risks. However, there are many factors that may need to be considered. During pregnancy, your heart has much more work to do. It has to beat faster and pump more blood to both the mother and the baby. If you are a woman who has congenital heart disease, then this extra stress on your heart may be a concern. Considering these issues before pregnancy and being prepared for potential complications can help you feel more confident and more in control throughout your pregnancy.

Preconception planning
The most important thing you can do if you are a woman with congenital heart disease is to talk to both your cardiologist and obstetrician before you get pregnant. This will allow you to understand what risks (if any) are involved for your pregnancy. You can also determine if there are any concerns with your heart that need to be fixed prior to pregnancy—for instance, do you need to alter any medications or have any surgical repairs? Doing all of this before pregnancy will allow you to make sure your heart and your overall health is ready for pregnancy.

Some medications carry a risk for birth defects. These include ACE inhibitors and blood thinners. Therefore, if you are taking these medications and want to have a baby, it is important to talk to your doctor about their safety and potential alternatives that may work for you. However, you should never stop taking any medications without your doctor’s approval.

You may also want to meet with a genetic counselor to review the risks of passing congenital heart disease on to your baby. This risk will vary depending on the cause of the heart disease.

Pregnancy
During pregnancy you and your doctors will want to minimize any risks for both you and your baby. You will need to have regular follow-ups with both your obstetrician and cardiologist. It is important that your doctors work together and coordinate your care. Some women will need to be followed by a maternal-fetal medicine specialist (an obstetrician who manages high-risk pregnancies).

Although most women with congenital heart disease have safe pregnancies, symptoms of heart disease can increase, especially during the second and third trimesters when the heart is working much harder. This may mean additional visits to both your cardiologist and obstetrician.

Typically if you have a personal or a family history of congenital heart disease, your obstetrician will offer you a fetal echocardiogram at around 18-20 weeks of pregnancy. This is a specialized ultrasound that allows your doctor to check out the anatomy of your baby’s heart and look for major structural changes. Not all heart defects can be identified through fetal echo though.

Delivery
It may surprise you to learn that most women with congenital heart disease can have a normal vaginal delivery. You and your doctor will want to discuss pain management options and have a plan in place. You may need additional monitoring both during and after delivery. This can include oxygen monitoring as well as EKGs (electrocardiogram—a test that checks for problems with the electrical activity of your heart).

If you have congenital heart disease work with both your obstetrician and cardiologist so that you can have the best outcome possible. As with most chronic medical conditions, planning for your pregnancy will allow you to make informed decisions about what is best for you and your baby.

 

Monday, February 16, 2015

Kami's story

I was 30 weeks pregnant when my water broke at 3 am. The doctor told us to get to the hospital quickly... shortly after getting there, they flew me to UMMC (University of Maryland Medical Center in Baltimore) where I was placed on strict bed rest with my best friend/hubby by my side for 5 days. On March 10, Kamryn was in distress and decided to make her arrival through emergency C-section...

At just a few weeks old, we found out about her PVL (Periventricular leukomalacia)... Scared to death, we didn't really know what to expect but we knew this was God's plan and with our amazing group of family and friends, we would get through this together and everything would be ok! After being in the NICU at UMMC (almost 2 hours from our home) for the longest 2 months ever, Kami was able to come home.

At just a few months old, Kami was diagnosed with CVI (Cortical visual impairment) and quadriplegic spastic high and low tone CP (cerebral palsy), at just 9 months old, she had a very severe seizure that almost took her life. She was intubated and on a breathing machine for 3 days... This is when she was diagnosed with epilepsy. At 14 months old, she had surgery to put at G-tube in, this was because she was very underweight and aspirated when she swallowed - all the food/liquids were going into her lungs. She has recently been diagnosed with asthma and has had a lot of breathing issues. She has had one eye surgery with more expected.

Kami is now almost 3 years old on March 10, 2015 - she does not crawl, walk or talk, she has PT, OT and breathing treatments every day, continues to struggle with seizures and everyday issues - but has a smile that would light up a room and is a very happy beautiful baby girl." If it wasn't for the help of others, we don't know where we would be and we are so grateful for all our blessings!!!

Wednesday, February 11, 2015

Share Your Why We Walk Story


We want to hear from you! Every Wednesday leading up to March for Babies, we will post a story from one of our walkers on this blog as well as MD-NCA Facebook and Twitter accounts.  


We are asking volunteers to provide a quote and picture(s).

Please fill out the following and send photos (a newborn and recent photo – it can be from a March for Babies) to Heather Kane at hkane@marchofdimes.org for consideration.

First and Last Name
Email
Team Name:  
Walk site: 
 Story/Quote (200-350 words about your journey and why you March for Babies): 

Monday, February 9, 2015

Does your baby have the right car seat?

Finding 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.