Why I Walk Wednesday: Arlo & Shay

When two moms were placed on bedrest at Novant Health Prince William Medical Center, they had no idea what bonding and friendship would form because of their situations. Deena was diagnosed with Placenta Previa, a condition where the placenta lies low in the uterus and covers the cervix causing heavy bleeding. She was placed on hospital bedrest for five weeks. The staff promised her "This will be over before you know it." They were right!

Arlo was born via an emergency cesarean section at 32 weeks. He spent 35 days in the NICU. Through all the alarms and feeding tubes he never gave up. From his little NICU bed, Arlo was alert and curious about the world outside. He was always looking beyond the door to his future. Today, he’s a thriving one-year-old. His amazing smile lights up the room.

Audrey’s three weeks on hospital bedrest was due to a rupture in her amniotic sac. It was anything but “Rest” as staff came in around the clock to monitor her and the baby. The staff at PW Novant was incredible and made big sis (age 1) feel like a rockstar when she visited her mommy each day. Shay was born via an emergency c-section at 30 weeks (3 months sooner than big sister, Reese). She was unable to breathe on her own for several weeks. Shay spent 43 days in the NICU slowly gaining weight and growing strong. Now, this one-year-old is meeting and exceeding her milestones. Shay will continue to have issues with breathing as her lungs were not fully developed at birth, but with her fighting spirit, she will continue to thrive.

Deena and Audrey constantly checked on one another's infant while they were in the NICU and continue to message one another daily. They can't imagine this past year without the support from each other. Their bond is incredible. They rode the NICU roller coaster together and that is a ride many people cannot understand.

While Arlo and Shay were in the NICU during March for Babies last year, both families are looking forward to walking with their miracle babies this year. 

Neither Deena or Audrey imagined this experience would happen to them. That's why they encourage you to participate in March for Babies – to help the March of Dimes fight prematurity so more babies can get the strongest start possible.

www.marchforbabies.org/avbaldwin --Shay

www.marchforbabies.org/team/TeamArlo  --Arlo 

Why I Walk Wednesday: Kami

When she was 30 weeks pregnant, Shauna went into premature labor and was put on strict bedrest. Five days later, she gave birth to Kamryn via emergency C-section. Born 10 weeks early, "Kami" was soon diagnosed with periventricular leukomalacia, which is a brain injury found in infants -- particularly in premature babies. 

After being in the NICU at UMMC (almost two hours from their home) for the longest two months ever, Kami was able to come home. 

Kami had her first seizure when she was nine-months-old. She was diagnosed with epilepsy. A short time later, she was further diagnosed with spastic quad cerebral palsy, cortical visual impairment, torticollis and asthma. Kami is now four-years-old and has a contagious smile. She is full of life and teaches everyone what life is really all about!

Kami and her family are this year's March for Babies Ambassadors for Suburban Maryland. You can meet Team Grimes at the Southern Maryland March for Babies at Regency Furniture Stadium, which is the home of the Southern Maryland Blue Crabs baseball team. They invite everyone to join March for Babies so that moms can have healthy, full-term pregnancies. Register for a walk near you at marchforbabies.org. A few of them are at baseball parks!  

Why I Walk Wednesday: Lucy

At their initial prenatal visit, Lucy’s parents found out they were having monochorionic diamniotic twins, identical twins who share a placenta but have separate amniotic sacs. From early on, one twin was measuring much smaller and they were diagnosed with early onset twin to twin transfusion syndrome, a dangerous and potentially fatal complication. Furthermore, at the first trimester screening, the smaller baby was diagnosed with holoprosencephaly, a severe brain abnormality. The doctors thought it was likely that both of the twins had a severe chromosomal abnormality; however, the bigger twin had appeared normal on all ultrasounds. Due to the TTTS and the very sick twin, the difficult decision was made to have a selective cord coagulation laser procedure by the fetal therapy team at Johns Hopkins in hopes to save the other twin. After much testing (two amniocentesis and one CVS procedure), it was determined that the remaining baby was a healthy girl and did not share her sister’s chromosomal deletion. Then, just shy of 28 weeks, at a routine prenatal visit, Lucy’s mother was diagnosed with preeclampsia and admitted after presenting with high blood pressure and proteinuria. She spent the next 22 out of 27 days in the hospital being closely monitored until on Feb 17th, Lucy was born at 31 weeks, weighing just 2lbs, 8.6 ounces. She was born via C-section after a failed induction attempt. She spent the next 45 days in the NICU and was able to go home two weeks shy of her due date. She is now a healthy, happy one-year-old. Lucy's mom is a nurse practitioner at The Pediatric Center who participates in March for Babies because she knows that March of Dimes is hope for the future and improved pregnancy and birth outcomes.

Why I Walk Wednesday: Jaxon

At 33 weeks, Jaxon’s mother discovered that she was leaking amniotic fluid. She was admitted to the hospital and put on an IV antibiotic to prevent an infection to Jaxon. The hope was to delay Jaxon’s arrival until 35 weeks. However, he was delivered by emergency C-section within 4 hours. Jaxon’s dad was able to see him briefly before he was taken to the NICU for unstable oxygen levels. He was put on a C-PAP because he could not breathe on his own, and he was in an incubator to help control his temperature. His liver was also not functioning correctly. Jaxon’s parents spent as many hours as possible by his side. Thanks to the wonderful care in the NICU, along with the kangaroo care and breast milk he received, Jaxon was able to come home after only 16 days. Jaxon may only measure in the 5th percentile for his age, but he is now a happy, healthy, and inquisitive little boy. Jaxon and his family look forward to seeing you and your teammates at March for Babies this year.

Why I Walk Wednesday: Tristan

Premature delivery was anticipated for Tristan, so his mother was given a round of drugs to develop his lungs and she had blood drawn three days a week. Tristan had a high heart rate, and the doctors were attempting to treat him in utero by administering drugs to his mother. After visiting the specialist for a weekly blood draw on July 3, Tristan’s mother was told to go to the hospital immediately. Tristan's heart was no longer responding to the drugs and fluid was beginning to build up around his heart. On July 4, Tristan was delivered by C-section at 30 weeks gestation. The delivery was uneventful, and after showing Tristan to his mother, he was whisked away to the NICU.

The first few days were vital because no regiment of medicine was helping Tristan get better, causing a code blue to be called multiple times. About three days later, they were able to stabilize him. Tristan required surgery to correct a patent ductus arteriosus (PDA), and eleven days after his birth, he had his first surgery. The next few weeks were challenging as Tristan went through tests, which revealed that his blood was abnormal and there was concern of no audible function in his right ear. Tristan developed jaundice, was sedated, and had to have four blood transfusions. As the weeks passed, even though the test results were not always favorable, he started to eat better and gain weight.

Despite the adversity he faced within the first few years of his life, Tristan has grown into an intelligent, perceptive, and loving boy. Tristan participates in March for Babies each year with his team Tristan’s Trotters. Join your local March for Babies at marchforbabies.org. 

Why I Walk Wednesday: Amelia Keppel

Amelia Keppel was born two months too soon and weighed just 2 pounds, 3 ounces. During her two month stay in the Neonatal Intensive Care Unit (NICU), she received multiple blood transfusions and faced persistent breathing issues. Because the NICU was closed to siblings, her sisters, Maddie and Tess, did not get to meet Amelia face to face until she came home 63 days later. It was also her original due date. 

Amelia began receiving early intervention services when she was 6 months old, and she has always needed intensive learning support in school due to severe processing and archiving issues. 

Today, Amelia is 12 years old and enjoys horseback riding, swimming and acting. She will be joined by her spirited team "La Famiglia di Amelia" at March for Babies in Baltimore. You can find a walk near you and sign up at marchforbabies.org.

Why I Walk Wednesday: Danielle Matragrano

Every Wednesday during March for Babies season, we'll feature a local NICU to Now story. This week, we're featuring Danielle's story as recalled by her mom Jennifer.

It was the day of my 25 week checkup and the doctor said I needed to go to the Fair Oaks hospital because there was protein in my urine and my blood pressure was off the chart. We went straight to the hospital where I was told I was suffering from preeclampsia and they would have to perform an emergency C-section. We were transferred via ambulance to Fairfax Hospital where Danielle Grace Matragrano was born weighing only 1 pound, 2 ounces and was 10 inches long.  

We stayed in the NICU for 118 days and experienced a roller coaster of emotions. Danielle is now a healthy, active 4-year-old. She is involved in karate, dance, gymnastics and loves going to Disney World.

Make a difference for babies like Danielle by joining your local March for Babies! Register today at marchforbabies.org.

Why We Walk Wednesday! Natalie

In 1999, I became pregnant with my third child. After giving birth in December of 1998 to a baby boy, I was ecstatic to think I was expecting again. The pregnancy started out like the other two, but at 4 months, I felt an odd pressure that felt like I was about to give birth. We rushed to our doctor and shortly after being examined, I was told I had an "Incompetent cervix" and needed to have a procedure to sew my cervix closed. I was prescribed bed rest for the remainder of my pregnancy. Before doing the procedure, an amniocenteses was performed, and I found out that we would be expecting a baby girl. 

I remained very disciplined with my bed rest. However, at 20 weeks, my water broke. I was rushed to Georgetown hospital where the doctors said that if I was put in "Trendelenburg" -- basically positioned upside down -- that my amniotic fluid could replenish. I remained steadfast in my determination to deliver my daughter healthy. I stayed in Trendelenburg for 8 weeks. I had been experiencing leg pain in my left leg from week 21, which the doctors and nurses treated with pain medication  Unfortunately, the pain turned out to be a severe DVT (Deep vein thrombophlebitis) and after many attempts to hold off my labor with treatment of Heparin I was rushed into surgery.

On November 28, 1999, Natalie Elizabeth Simonson was born. She also died that day after fighting 8 long hours to survive. Her little lungs were not strong enough. I was never able to meet her, as I was in critical condition from losing so much blood. The surgery left me in ICU for 4 days. I believe it was God’s way of protecting me from the horrific loss of my baby girl.

If I were to go through the same today, because of the March of Dimes, research would have had me on preventive measures to avoid DVTs in women on bed rest. As well as the advances in premature deliveries and babies and their survival. It took me a long time to recover from the loss of my child. The pain for our family is something no one should have to experience. I chose to work with the March of Dimes to help our future generations have a better chance.

Why We Walk Wednesday! Layah Faith

Our little girl was about 3 pounds at birth. Now, she's a healthy 15 pounds. Not only has she caught up physically with a full term 5 month old, but she has caught up developmentally as well especially for her adjusted age to be only 3 months.  

It's amazing how she went from just 3 pounds to my 15 pound butterball. The March of Dimes is now my favorite charity, and I thank them for all they have done. I still wear my purple, March of Dimes bracelet. 

Why We Walk Wednesday: The Gachot Family

During the blizzards of 2010, my water broke when I was 21 weeks pregnant with our daughter, Addie. After being rushed to the hospital, I was told that I had premature ruptures and would need to remain there on bed rest until she was born. Three weeks later, I was rushed into an emergency C-section. 

Addie was born on February 20, 2010, at 24 weeks gestation. She weighed 1 pound, 7 ounces and was 11 inches long. 

She was on a ventilator for 26 days. She had good and bad days but was still unable to breathe on her own. On the morning of July 29, we made the decision to take her off the ventilator after five long, hard months of fighting. Addie died in our arms at 2:45 am. 

Addie’s little brother Hudson was born on March 30, 2012, at 36 weeks and 6 days. I can contribute his almost full term delivery to the help of my weekly progesterone (or 17P) injections. We just welcomed another son, Crosby Jacques Gachot to the family on April 24, 2015. Mom and baby are doing well!!

The Gachots are the 2015 March for Babies Ambassador Family for Greater Baltimore. Their "Walking for Addie" team will walk on May 9 at Hunt Valley Towne Centre in memory of Addie and in honor of her little brothers Hudson and Crosby!

Why We Walk Wednesday! Angels on Earth and in Heaven

This year, walking to raise money for the March of Dimes will be bittersweet for me. In previous years, it was a happy day where I got to remember how lucky I was that my now 4-year-old, Emily made it through the terrifying delivery at 26 weeks and overcoming her 86 days in the NICU. Now I am seeing the other side- the terrible side no mother should ever face in her life.




This year, we are also walking to remember our beautiful Anna, who was born on September 13 at 22 weeks -- too soon and too small to survive. Tom, Emily and I miss Anna everyday and wonder what she would be doing right now. We love her so much. Emily misses her little sister. We changed our team name to "Angels on Earth and in Heaven" to honor and remember both of our daughters.



We know the research developed by the March of Dimes was proven to save Emily's life. So, we continue to walk and support the March of Dimes so one day ALL babies will be born healthy and hope one day no mother has to feel the pain of loss.

Why I Walk Wednesday: Lee West

Meet Lee, the 2015 March for Babies Ambassador for Maryland's Eastern Shore! Baby Lee was born in December of 2011. He was six weeks early weighing 4 pounds,14 ounces. Due to prematurity complications, he was airlifted to Children’s National Medical Center where he stayed for the next 12 weeks. He fought through multiple surgeries, procedures, even Sepsis. Thanks to the help of his amazing medical team and modern medicine, after spending 88 days in the NICU, Lee came home on February 8, 2012. 

Lee is now a very active 3-year-old. He is proud to call the scar on his abdomen his ‘battle wound!’ 

His sisters have never cut him any slack when it comes to sibling rivalry but are also very protective of their little brother. 

The West family invites you to come out and walk in Assateague on May 2 or find a walk near you at www.marchforbabies.org!

Why We Walk Wednesday! Riley, Baylee and Charleigh

This is my first year walking for March for Babies. In February 2014, my husband and I found out we were expecting. We were surprised at first, of course, but very happy to be given such a wonderful gift. In April, we found out we had triple the gift when it was revealed on an ultrasound that we conceived spontaneous triplets. We were beyond words and everything changed at that moment. As first time parents, we were scared to death. I was closely watched by several doctors and followed a different set of rules. We were expecting all girls. Two identicals Baby A Riley and Baby B Baylee and Baby C Charleigh, our fraternal.

My pregnancy was healthy for the most part and all three little girls were growing beautifully. Everything was great until June 30, 2014, which is a day I will never forget. It was a routine ultrasound that I received biweekly. They had found that Baylee’s heart had stopped suddenly, and they were unsure of the reason. There wasn't any sign of twin to twin or anything else. My heart broke to pieces and it will never be the same again. Since she was my middle baby, I would need to continue to carry her until I gave birth to her sisters. I was around 23 weeks along so she would still be born, just silently and very small. She was 5 oz at birth. Since I had to continue to carry her, my risk for preterm labor and other difficulties increased more than it already was. The rest of my pregnancy was full of fear and anxiety. I was watched even closer now, and by the gift of God, wonderful doctors and research, I made it to October 6 (36 weeks and 2 days). My late preemies did not need the NICU despite Charleigh being 4lbs due to becoming growth restricted and developing cord flow issues.

I am forever thankful for my doctors to getting me and my babies as far along as possible and watching us closely to keep us safe. My story could have turned out worse than it already was and that is unimaginable. I have decided that I want to do something every year for the good of others in honor of Baylee and my surviving triplets, Riley and Charleigh. What could be more appropriate than March for Babies? I want to help other families like ours. I want to help them have a better outcome than we did and be able to take all of their babies home whether they gave birth to one or to multiples. I want all babies and pregnant women to have the best care possible. I feel that I made it as far as I did because of the care I received and it is important for that level of care to continue to grow. Fundraising for this cause in honor of Baylee is helping my healing process, and I am just excited to make this a tradition.

Why We Walk Wednesday! Paige and Jackson

Like you, we did not prepare for this. You can never really prepare yourself for this…..the loss of a normal pregnancy, the birth of a premature baby and the long days of care they are going to require. The emotions that come with a premature birth are sometimes indescribable to the inexperienced and are certainly at times unbearable for those that do experience them.  You see and hear all the normal rhythms of a normal pregnancy and childbirth playing out all around you. You feel isolated and alone as you see and hear the other families celebrate their new “bundle of joy”.

We went through and felt all those things. Sometimes we still do. Two years later. We did have joyous, “normal” moments during our pregnancy.  Then, after being hospitalized for five days at 24 weeks gestation with pre-term labor, there was a last-minute, unplanned baby shower.

But on Monday September 17, at 25 weeks, we went in for a follow-up ultrasound. The ultrasound tech was not smiling as she had before. We were immediately admitted and stayed in the hospital for the next 12 days. Agonizingly watching contractions on a monitor and praying and hoping that we could somehow stop what seemed to be an inevitable, early conclusion. On September 29^th, we were transferred here, to Franklin Square, because it seemed we weren’t going to be able to forestall the now unavoidable early delivery.

My wife and I are in the medical field and work as respiratory therapists. We knew all the statistics and outcomes but that knowledge and familiarity did not lessen the blow or fear. When the doctor came into the room and delivered the news that these babies were coming and there were no more options to delay, there was a feeling of panic and fear and denial. We hadn’t even picked names.

Paige Emerson and Jackson Phillip were born in the early hours of September 30, 2012 at 27 weeks gestation. Paige weighed two pounds two ounces; Jackson two pounds. I still remember the pin-drop silence in the operating room. It is a mixed-emotion, bittersweet moment. My wife, laying on the operating room table, just kept looking up at me and asking if they were OK. I could only say they were doing all they could. Paige and Jackson were taken to the NICU and away we went on the proverbial roller coaster.

Some people will tell you as you sit vigil at your baby’s isolette or crib that “everything will be OK”. It is hard to accept. It is the furthest thing from OK. Not right now. Being in the NICU is scary and hard and noisy and overwhelming. Life outside doesn’t seem to exist. We dealt with news of brain bleeds. Holes in hearts. Lungs that weren’t working. Infections. Ventilators. Tubes. IV’s. Apneas. Bradys. Lights.

The first couple weeks were the most difficult. While Paige and Jackson were hooked to equipment and were fighting hard and struggling we watched other babies come and go. But immediately, with the help of the doctors, nurses, RTs, family and friends we were able to somehow insulate and internalize all those emotions and hold and comfort and provide all the care that we could for Paige and Jackson. Those times were so special.  Day after day went by. We ate dinner in the hospital every night. My older children did homework in the hospital every night. We resolved that we were NOT leaving this hospital without our babies. And then something happened. As I reflect, I can’t pinpoint the exact day or moment, but the darkness that seemed to cast a shadow over everything started to illuminate. We celebrated things you never imagined you would, but things that were perfectly appropriate in our new world.  The 3, 4 and 5 pound club. Wearing clothes for the first time. Coming out of an isolette, affectionately referred to as their little house.  We cheered the simple acts of breathing. We held them skin-to-skin with joy and not with fear. We eventually even heard them break their silence and cry for the first time. We realized that our babies had a fight in them that was so far beyond their size. Each day that passed shed more and more light. I remember vividly a day when a next-door NICU mom who was getting ready to leave with her baby leaned over and said “your day will come”. It’s obvious to me now that she had come through the darkness and into the light. 121 days passed since we went to that ultrasound, 108 days since Paige and Jackson had come to meet us. It felt like a lifetime. We went to that ultrasound wearing shorts and short-sleeves. And then the leaves had changed colors. Halloween had come. Thanksgiving had come. Christmas and New year’s had come. And then finally Paige and Jackson’s day had come. They came home. All bundled up in the middle of winter. It was a strangely surreal experience. We had reluctantly driven away from the hospital every day for 107 days without a huge piece of our heart that laid behind in the NICU. But then we didn’t. In the van, we looked behind us to where Paige and Jackson now laid with us. We turned back around and cried an indescribable cry and nothing held us back. 

I tell people it was the hardest thing I have ever done. It still is. But you will derive strength from places and people unknown to you prior. Many times and mostly from that little baby that has a fight and strength you will hear called “a preemie fight”. Its like no other. Your day will come.

Why We Walk Wednesday! Amelia

Amelia was born two months too soon and weighed just 2 pounds, 3 ounces. During her two month stay in the Neonatal Intensive Care Unit (NICU), she received multiple blood transfusions and faced persistent breathing issues. Because the NICU was closed to siblings, her sisters Maddie and Tess, did not get to meet Amelia face to face until 63 days later when she came home. It was also her original due date. Amelia began receiving early intervention services when she was 6 months old, and she has always needed intensive learning support in school due to severe processing and archiving issues.

Today, Amelia is 11 years old and enjoys horseback riding, swimming. Her favorite activity is acting.
Amelia was honored recently at a Comcast Sportsnet banquet in Philadelphia featuring the defender for the Philadelphia Union Professional Soccer Team, Ray Gaddis. View the video. Ray joined Christy and her family to celebrate Amelia who was the recipient of a Shining Star Award at the gala.

Her tenacity and spirit (and her amazing family) have helped her to deal with developmental issues related to her premature birth. Congratulations to Amelia and family. You are our Shining Stars! :)

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. 

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.

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! 

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. 

Why We Walk: The Heard Family

Our journey as a family started with a healthy pregnancy. After having Luke, we unfortunately miscarried but tried again. Then, we learned we were having identical twin boys. With uncontrollable joy, I started buying two of everything.

At 24 weeks, the bigger twin, Cody’s heart stopped. Then, I learned the babies had Twin-to-Twin Transfusion Syndrome. So, I had an emergency C-section. Our twins were born; Cody weighing 1.6lbs, and Dalton weighing 1.2lbs; and they were whisked off to the NICU. We spent countless hours at their bedside with them praying, singing, and talking to them. After three long days, we got the call to say goodbye to Dalton. This was the longest walk of my life. We held him for what felt like hours, kissed his fragile lips and said goodbye.

We visited Cody in the NICU every day for 143 days. After many ups and downs, we finally brought him home with oxygen support. While we celebrated every single joy we had in our life, our oldest son, Luke and our surviving twin, Cody - we were numb with pain. 

The March of Dimes helped us in various ways throughout this journey. During our NICU stay, the NICU Family Support Specialist, Sara, walked by me to ask how I was or if I needed anything. We participate in March for Babies to honor our journey.