Sharing our story--Jameson

I am a NICU nurse and a NICU mom.

In July of 2008, my husband and I were so happy when we found out that we were expecting our first baby. My pregnancy was uneventful until my 32-week appointment showed that my baby wasn't growing well. I was placed on bed-rest and made it two weeks before I became sick with preeclampsia and HELLP syndrome. Little Jameson Patrick was born via emergency c-section and weighed four pounds, five ounces. We didn't hear him cry. I remember straining from the operating table, trying to see past the sea of people, wondering if my little guy was okay. Finally, a little kitten mewed twice--that was Jameson's cry. We were so thankful.

Amazingly, he spent just six days in the NICU step-down unit. We couldn't believe it when we took him home weighing four pounds, two ounces! What I have learned about being a preemie mom, though, is that the story doesn't end when you leave the NICU. We struggled with some common preemie problems in his first eighteen months: low-weight gain, reflux (GERD), motor delays, and physical therapy. Now he is a thriving and quite wonderful two-year-old.

I have walked in the March of Dimes for five years. I walk not just for my son, but for all the babies that I take care of in the NICU. I walk for all the times I have administered surfactant to premature baby lungs that wouldn't work with out it; for babies that would not have lived if they hadn't been able to receive nitric oxide; for babies that have avoided heart surgery by receiving a medication instead. I walk for moms who pump breast milk every three hours for months so that I can feed that milk to their babies through a tube; parents who wait days, weeks, or even months to hold their babies. I walk because although March of Dimes research has brought great technical advances, we still don't know the reason why many babies are born preterm.

--Proud mom, Jenn Ross

Sharing our story--Baby Max

We are trying to spotlight several families that have been touched by March of Dimes. None of us are in this alone, and we are all walking together for stronger, healthier babies. Here is the story of Baby Max:

Max was born at 25 weeks gestation, EXACTLY! I was admitted two days earlier when my water broke. I woke up on that morning in labor and he was here within a couple of hours. I had an infection in my placenta. Not sure what caused it, no symptoms, etc...

Max was large for his gestational age at 2 lbs 2 ozs. He had good skin and those were two important things which really helped him along the way.

I waited 19 days to hold him... in that time he underwent heart surgery and bowel surgery, and my greatest fear was that I would hold him for the first time, when they placed his dead body in my arms. That was my lowest point...

It was hard to know whether to bond, or keep a distance until we knew things were safe. It was hard to juggle spending time in the NICU with him and still being a family unit and caring for our other two children, who were 3 and 5 at the time. It was hard watching him suffer and struggle and being powerless to help him, hold him or heal him.

Max underwent 5 surgeries, he had PDA ligation, 3 bowel surgeries for his NEC (necrotizing entercolitis) and a dual inguinal hernia repair. He was on the vent for more than 3+ months. He was on IV nutrition and no oral feeds for 3+ months.

Max received 3 doses of surfactant, the first right in the delivery room, to help him breathe. We know research funded by the MOD made this possible.

We also learned through March of Dimes research that breast milk would give him a 50% better chance of surviving NEC. So when I couldn't produce milk of my own, we found a milk donation option.

The ONLY parent information we received in the NICU was provided by the March of Dimes. They helped us understand the terminology, the treatments, and started us in the right direction so we could ask questions, consider options, and be involved in our baby's care.

Max is a whopping 23+ lbs and growing stronger every day. We still face struggles. But we are the lucky ones.. because Max is alive. He will l turn 1 on April 16th, and we've chosen to celebrate his birthday at the Kansas City March for Babies. Instead of gifts, we are asking friends and family to join us, and donate to the March of Dimes. They helped save our baby, and us, during those 123 days in the NICU. The most difficult 123 days of our lives...


Jennifer Hamblin Robinson

2011 Ambassador Family

The Vire Family, Gerry, Jennifer, & Cameron


Dear March for Babies Team Captains,

We are honored to serve as the 2011 March of Dimes Ambassador Family for Kansas City and have this opportunity to share our son’s journey of survival. We never anticipated delivering our child early or with any complications, but we now know that prematurity can affect anyone.

When we found out that we were pregnant with our first child, we were so excited for this new chapter in our married life and we were having a normal, healthy pregnancy. Unfortunately, about 17 weeks before he was due, we started having complications. I began to experience severe upper abdominal pain and decided to visit the Emergency Room. After sending me home with medication to ease my pain, I was monitored to make sure that the baby was still doing well. I followed up with a specialist and he told me I had developed HELLP syndrome and pre-eclampsia, a condition where my blood pressure was dangerously high. Since my health was now at risk, I needed to be monitored at the hospital until I had the baby. Gerry and I were overcome with emotion as we realized our dream of having a healthy baby was slipping away.

On October 14, 2007, exactly 15 weeks early, Cameron Jake was born at Overland Park Regional Medical Center. He weighed just 1 pound even and was 11.25 inches long. He was sent to the Neonatal Intensive Care Unit (NICU) and I was sent to the adult Intensive Care Unit because my condition had worsened. It was hard being away from Cameron as I was healing in the ICU; I was not able to see him until he was nearly a week old. Cameron’s health was so fragile at first, that it wasn’t until two weeks after he was born that I finally got to hold my son for the first time – what an amazing feeling! Every day in the Neonatal Intensive Care Unit was touch and go, but Cameron always proved to be a fighter. We were so grateful for the surfactant therapy, created as a result of March of Dimes-funded research, which contributed to saving his life. This therapy helped Cameron eventually be able to breathe on his own. After spending 104 days in the NICU, Cameron finally came home without any medical equipment or follow-up needed.

Today, we are so happy to report that Cameron is a happy, healthy, intelligent three year old. While Cameron is still catching up to his classmates in size, in our eyes he is perfect as his personality is larger than life and he has a zest and energy about him that can light up a room.

It is so important that we all continue to support the March of Dimes to raise money for the fight against premature birth. The reason Cam is alive today is because of the research that has been funded by the March of Dimes, research that has led to lifesaving treatments and technology. Without the March of Dimes, the chances that Cam would be with us today are slim. It’s that simple. The dollars YOU raise DO make an impact.

Thank you for walking together for stronger, healthier babies!
The Vire Family
Jennifer, Gerry, and Cameron
2011 Kansas City March of Dimes Ambassador Family

Imagine........

This was written by mothers on the Shareyourstory.org website. It was a thread where they were asked to finish the sentence “Imagine…” in a way that helps others understand the effects of premature birth. Let us know how you would finish the sentence in the comments section.

Imagine........

Imagine.....your baby's birth weight being less than a bag of sugar or a 2 pound free weight or a 32 oz soft drink

Imagine…your granddaughter's tongue the same size as a tic-tac

Imagine...not hearing your child cry until he was a month old

Imagine…trying desperately to stay pregnant for as long as you can, even at risk to your own health

Imagine…giving birth only to be told that your baby has a 40% chance of survival and if she does survive, she will be blind, mentally and physically handicapped and never walk

Imagine…the smile on your face and the tears in your eyes when one year later, that same child RUNS past that same doctor

Imagine...having a hospital feel like home and your house feeling like a place you occasionally visit to sleep

Imagine…not seeing your daughter’s face until she was four weeks old because she was ventilated

Imagine…being able to fit your wedding ring on your child’s arm

Imagine…leaving the hospital empty handed

Imagine…planning your newborn’s funeral

Imagine…having the hospital call a week after the baby’s birth and asking if you’re having fun with your new baby…the new baby that you’ve never even held because he’s in the NICU struggling for life

Imagine…boxing up all of your baby things because it’s too painful to look at them in the nursery
Imagine…signing papers to allow for surgery on a baby who weighs less than a pound and a half

Imagine…the pain of parents all around you losing their babies, grief and guilt mixed with relief that it’s not you

Imagine…holding your baby when she’s two weeks old and realizing that the blanket she’s wrapped in weighs more than she does.

Imagine…feeling the pain of seeing pregnant women

Imagine…having to choose to stop breastfeeding the child you’ve already taken home in favor of his twin sister who is still in the NICU

Imagine…the fear of ever having another child

Imagine......Being afraid of, and afraid for, your child.

Imagine......Not even knowing who's lips, eyes, nose, or chin your child has because you can't see their face for all the tapes, tubes, and eye masks.

Imagine....Your husband knowing your nurses and the NICU routine better than you because he's been there for five days already before you ever even get to see your son.

Imagine...the looks on the faces of your friends and family when you try to talk about the future

Imagine...Being ecstatic when your baby hits 4 pounds, or 3, or 2...

Imagine…knowing your baby is born but the only sound you hear is the door closing as they take her away

Imagine... getting condolences instead of congratulations when your child is born.

Imagine... Not getting to hold your child until he/she is nearly a month old.

Imagine... hearing comment after comment on all the things people didn't think your baby would ever do.

Imagine... that some of the most peaceful times of your day are when you are sitting attached to a breast pump!

Imagine... how quickly the rough past fades away when your child first smiles at you.

Imagine…trying to produce breast milk that your baby desperately needs even though your body isn’t prepared to produce it

Imagine…knowing your baby literally inside and out because of x-rays, heart monitors, brain scans and blood tests

Imagine…dressing your baby for the first time in doll clothes

Imagine…knowing that no matter what happens, your life will never be the same

Imagine....being able to turn this life altering, tragic journey into something that can help many, many other people!