Family Team News

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Wednesday, March 25, 2015

Why We Walk Wednesday: Marcus & Myles

The Kuhns’ road to parenthood was filled with doubt, uncertainty and loss. In the end they were blessed with two miracles. Conceived through IVF, Marcus Jaden was born at 32 weeks on October 12, 2009, weighing 4 lbs. 14oz. After six weeks in the NICU, he came home on an apnea monitor. Today, Marcus is a healthy 5-year-old. 

With their second son, Sarah began preterm labor at 30 weeks and received medication to stop the contractions.  On March 12, 2011, Myles Gavin was born at 36 weeks, weighing 7 lbs. 3 oz. He spent 12 days in the NICU with underdeveloped lungs. Myles is now healthy and almost 4. 

The Kuhns are grateful for the March of Dimes research that enabled Marcus to receive surfactant therapy for his lungs. Combined with Sarah’s own twin siblings, who lived only eight days due to prematurity, she and Jeff are dedicated to raising awareness and funds so that more babies are born healthy. They are our 2015 March for Babies-Western Maryland ambassadors. 

Monday, March 23, 2015

March for Babies 2015 Family Team Fundraising Rewards






THREE March for Babies Family Teams
have the chance to WIN!
 

Your choice: Walt Disney World, Orlando, Florida or Disneyland, California

One trip will be awarded in our New* Family Team drawing.

Two trips will be awarded in our drawing for any Family Team that meets the qualifications below.

Trip includes air travel, three-night hotel accommodations and a 2-day Park Hopper pass for four people.

 
Travel between June 1st – December 31st 2015 (some restrictions apply)**

How to Qualify for Entry into the Random Drawings:

1) Your team must have a minimum of 4 registered, fundraising walkers.***
2) Your team must raise at least $5,000 in a March for Babies event in 2015.
3) Your team must show at least a 10% year-over-year fundraising increase from 2014.****
4) All money must be received online or turned in to your local March of Dimes office by midnight on May 15th, 2015, to qualify.
5) You may also qualify by sending in your name, address and email address on a postcard (one per person) to Scott Archimbaud at March of Dimes Foundation, 1275 Mamaroneck Avenue, White Plains NY 10605 – no purchase or participation necessary.
6) Drawing to be held on May 26, 2015, at the March of Dimes national office in White Plains, New York.
7) This incentive is not open to March of Dimes employees or family members.

 * A new family team is a family team that registers and raises money for the first time in 2015

**Some flight and hotel restrictions may apply

***A fundraising walker is a person registered as part of a family team that has received funds

****Does not apply to new teams

See Fundraising Reward Rules on next page

Wednesday, March 18, 2015

Why We Walk Wednesday! Baby Jase


I was blessed with two pink lines after struggling with infertility! We were so excited, we just could not believe that it only took one try of IVF and that it would be smooth sailing from here on out. July 20, 2013, at our 20 week ultrasound we were surprised by the radiologist telling us that we needed to go to L&D to make sure I wasn't in active labor due to my cervix beginning to shorten, but our baby boy was happy and healthy. After 4 hours of being monitored, I was cleared by my OB to go home on bed rest and that everything looked good, but I needed to follow up with a Maternal and Fetal specialist for further evaluation and monitoring. After following up with them they informed me that I was in pre-term labor and that they could not tell me when exactly I would go but they would start steroid injections to prepare Baby Jase's lungs for an early delivery.

August 9, 2013, would be a date I would never forget just 2 days after that appointment at 23 weeks and 5 days, at 9:00 pm I started feeling just not right but not in any pain, so off we went to Labor & Delivery to be checked out. After my arrival the nurse checked me (I will never forget the expression on her face, the look of horror), and she then informed the other nurse to call the doctor in now. All I remember is seconds later I was upside down and the nurse telling me that I was fully dilated and my water was bulging. I have never prayed so hard in my life, I just wanted to be able to hold him in there for just days or weeks. Baby Jase had his own agenda and was way to impatient and wanted to meet his mommy and daddy- 36 hours later our beautiful baby boy arrived, Jase Michael weighing 1lb 8 ozs 14.5 inches long. Hearing his first and last little cry was the sweetest thing, but saddest also. We were holding an angel three hours later. Holding him in my arms while he was taking his last breath was so hard but so beautiful, he was not suffering and he was not in any pain. A piece of my heart left with him and there is not a day that I do not think of him, he will forever be with us.


Monday, March 16, 2015

Thinking of getting pregnant? Get your blood pressure checked.

When was the last time you had your blood pressure checked? Nearly one in three adults has high blood pressure or hypertension. And yet, many of us do not even know that we have it. High blood pressure can be especially dangerous for both mom and baby during pregnancy. If you have high blood pressure and are thinking about getting pregnant, it is very important that you talk to your health care provider and get it under control as soon as possible.

Blood pressure is the force of the blood pushing against the walls of the arteries (blood vessels that carry oxygen-rich blood to all parts of the body). When the pressure in the arteries becomes too high, it is called high blood pressure or hypertension.

If you are 20 pounds or more overweight or if you have a family history of hypertension, you are at an increased risk to have high blood pressure yourself.

When was the last time you had your blood pressure checked? Nearly one in three adults has high blood pressure or hypertension. And yet, many of us do not even know that we have it. High blood pressure can be especially dangerous for both mom and baby during pregnancy. If you have high blood pressure and are thinking about getting pregnant, it is very important that you talk to your health care provider and get it under control as soon as possible.

Blood pressure is the force of the blood pushing against the walls of the arteries (blood vessels that carry oxygen-rich blood to all parts of the body). When the pressure in the arteries becomes too high, it is called high blood pressure or hypertension.

If you are 20 pounds or more overweight or if you have a family history of hypertension, you are at an increased risk to have high blood pressure yourself.

If you do have high blood pressure, there are a few lifestyle changes that you can make to get it under control, and to help prepare your body for pregnancy:
• 
Eat healthy foods and reduce your intake of salt, cholesterol, and saturated fats
• 
Exercise regularly
• Get to a healthy weight
• Don’t
smoke or drink alcohol.

Not all medications for high blood pressure are safe to continue during pregnancy. If you are taking any prescriptions to manage your hypertension, make sure you discuss them with your doctor. You should never stop taking any medications without talking to your provider first.

About 8 percent of women have problems with high blood pressure during pregnancy. Although most health problems can be managed with regular prenatal care, pregnant women with high blood pressure are more likely than women without high blood pressure to have these complications:
• 
Low birthweight: when a baby weighs less than 5 pounds, 8 ounces. High blood pressure can narrow blood vessels in the uterus and your baby may not get enough oxygen and nutrients, causing him to grow slowly.
• 
Premature birth: birth that happens before 37 weeks of pregnancy. A pregnant woman with severe high blood pressure or preeclampsia may need to give birth early to avoid serious health problems for her and her baby.
• 
Placental abruption: the placenta separates from the wall of the uterus before birth. It can separate partially or completely. If this happens, your baby may not get enough oxygen and nutrients.

Work with your provider before and during your pregnancy to control your blood pressure. Making a few changes now can help you to have a safer, healthier pregnancy.


If you do have high blood pressure, there are a few lifestyle changes that you can make to get it under control, and to help prepare your body for pregnancy:
• 
Eat healthy foods and reduce your intake of salt, cholesterol, and saturated fats
• 
Exercise regularly
• Get to a healthy weight
• Don’t
smoke or drink alcohol.

Not all medications for high blood pressure are safe to continue during pregnancy. If you are taking any prescriptions to manage your hypertension, make sure you discuss them with your doctor. You should never stop taking any medications without talking to your provider first.

About 8 percent of women have problems with high blood pressure during pregnancy. Although most health problems can be managed with regular prenatal care, pregnant women with high blood pressure are more likely than women without high blood pressure to have these complications:
• 
Low birthweight: when a baby weighs less than 5 pounds, 8 ounces. High blood pressure can narrow blood vessels in the uterus and your baby may not get enough oxygen and nutrients, causing him to grow slowly.
• 
Premature birth: birth that happens before 37 weeks of pregnancy. A pregnant woman with severe high blood pressure or preeclampsia may need to give birth early to avoid serious health problems for her and her baby.
• 
Placental abruption: the placenta separates from the wall of the uterus before birth. It can separate partially or completely. If this happens, your baby may not get enough oxygen and nutrients.

Work with your provider before and during your pregnancy to control your blood pressure. Making a few changes now can help you to have a safer, healthier pregnancy.

Wednesday, March 11, 2015

Why We Walk Wednesday! Maddi


As my husband and I sat excitedly at my 20 week ultrasound, the sonographer said, “It’s a girl.” But, within a minute the excitement was gone when the sonographer excused herself from the room. Shortly after that we were told that our baby girl Maddi had a hole in her diaphragm, called a congenital diaphragmatic hernia (CDH). Your diaphragm keeps all of your intestines in your lower abdomen, so Maddi’s lungs and heart were being crushed by her intestines and would not form properly. Local doctors gave us a 30% survival rate and offered termination. We went home devastated, but I was not ready to give up yet. I went home and found out that the Children’s Hospital of Philadelphia (CHOP) specializes in this condition and does extensive research on treatment options. 
We went for a day of testing and evaluation, and they determined that Maddi had a moderate form of the birth defect along with a small abdominal mass. They gave her a 90% survival rate if I was willing to move to Philadelphia before delivery. After several weeks of bed rest at home, I moved at 36 weeks into the Ronald McDonald House to be near CHOP. At 39 weeks, I was induced but my labor quickly turned into an emergency c-section when Maddi went into distress. She let out one little cry before being quickly intubated and sedated to protect her delicate lungs and heart. After two rocky days, she was stable enough for surgery and had her diaphragm repaired and mass removed at the same time. She spent the next month on a ventilator while her lungs and heart healed. There were many bumps along the way and a night or two we almost lost her but by month two she was off the ventilator and learning to eat. After 55 Days in the NICU, she was able to come home with a feeding tube and cared for at home. 
The March of Dimes funded Nitric Oxide therapy research, which was key to Maddi’s survival. Nitric Oxide was used to help treat the damage to her lungs and without this treatment I am not sure that she would be here today. Ten years ago when this treatment wasn’t available, babies with her condition had very poor outcomes, and those that did survive had terrible damage to their lungs. It is my HOPE that in the future all babies will be born healthy and other families will not have to go through the struggles that Maddi and our family went through.
We have had amazing support from our family and friends. Although it hasn’t always been an easy road, today Maddi is a happy 5 year old attending kindergarten and is thriving! 


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.