North Carolina Ambassadors
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Ethan and Gabby Martin, Twin Asheboro Ambassadors
As with most multiple births, we were concerned that our twins may arrive early. My OB had begun to get concerned about their growth. Our baby boy was estimated to be much smaller than our baby girl during ultrasounds. We are very thankful that the doctor gave me steroid shots to help the babies’ lungs mature. After cutting back on my hours at work and then taking me out all together, the doctor finally admitted me to Women’s Hospital in Greensboro. During an ultrasound the next day, they discovered that I was in labor. We were so scared. They were going to be ten weeks early and I was somewhat aware of the risks. The hospital did not have space for two babies in the NICU so I was transferred to Forsyth Memorial Hospital. Ethan Samuel and Gabrielle Elise were born at 10:44 PM and 10:45PM via cesarean section on August 3, 2001. Ethan weighed 2lbs. 5oz. and Gabrielle (Gabby) was 2lbs. 10oz.
The next couple of months were scary and definitely an emotional roller coaster. Gabby was on a ventilator for less than a day and received one dose of surfactant. She was weaned off oxygen after just seven days. Ethan however, was on a ventilator for seven days. He received four doses of surfactant. He was on oxygen for a long time.
The babies progressed well. They were both gaining weight and finally began sucking milk from a bottle. Gabby was moved to an intermediate room and finally came home on September 5th. Just a few days before, Ethan had also joined his sister in the intermediate room. The day after Gabby came home, Ethan began having trouble digesting milk and was “set-back” a bit for a second time. After going back into the NICU for a while he was finally upgraded again and started making good progress. Ethan was finally weaned off of oxygen and came home a few days later on October 5th. He has had surgery since to repair two hernias but has had no other major problems.
Thanks to the great care Ethan and Gabby received, the babies are doing wonderful today. We thank God every day for our two little miracles. |
Rene Zuraf, Carolina Foothills Division Ambassador
In Spring 2000, after trying to conceive for three years, I found out I was pregnant with my first child. My pregnancy was progressing normal, I was ecstatic and found out on my birthday that I was carrying a baby boy. We could now start the planning, buying, and name games. My bond with this baby grew stronger each day. On August 13, 2000 my husband and I were enjoying a pleasant day on the lake with friends when I started to feel sick to my stomach. I had no idea these gas pains were actually labor pains and four short hours later my very tiny baby would be struggling to survive. My first born son, Trevor William, was born at 24 weeks 1 day on August 13, 2000 at 10:28 p.m. on my cold bathroom floor. Unfortunately, he weighed only 1 lb. 12 oz. and was too premature and passed away while the paramedics were tending to him.
I became pregnant again in February 2001. This pregnancy would be closely monitored. I proceeded to have a cervical cerclage (stitch), weekly ultrasounds, and 15 weeks of bedrest. All preventative measures to keep my baby girl inside as long as possible. However, labor began suddenly and quickly at 33 weeks. I was admitted to the hospital and put on monitors and terbutaline and then magnesium to prevent my contractions. I was given steroids to develop the baby's lungs. The drugs were not effective and at 34 weeks exactly, I delivered little René. René came into the world on October 7, 2001 weighing 5 lbs. 12 oz. and screaming!! The NICU team was in the delivery room and diagnosed René happy and healthy and gave her to her Mommy. One hour later, René was having difficulty breathing and was admitted to the NICU. She stayed there for 27 hours and came home with Mom! René is now a very healthy 1-year-old beauty.
I feel the work the March of Dimes has done to research ways to prevent preterm labor and to develop NICUs is extremely important. René is my personal Miracle and someday I hope no mother has to grieve over the loss of a premature baby.
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Taylor Beason, High Point Ambassador
Taylor was born fifteen weeks premature weighing only 1 lb. 1 oz. one year ago and spent over 12 weeks in the NICU. We are proud to say she now weighs 14 lbs. 7 ozs.
Will Harbinson, Hickory Ambassador
Will was first diagnosed with a probable, very rare metabolic disorder. He had numerous and extensive lab work done. Many of those tests took up to several days to return to the NICU. When all came back within normal limits, another diagnoses was made and we were told that Will had Ondines' Curse, medically known as Congenital Central Hypoventalation. There is no test available for this disorder, it is only a clinical diagnoses. We were told that he needed to be transported to Baptist Hospital where he would undergo surgery for a trachestomy. We were prepared to bring Will home on a ventilator where he would only live a short and limited life. The Friday before he was to be transported, Dr. Wellman performed another lumbar puncture; Will's fourth. This time, his white blood cell count and platelet count was extremely high...indicative signs of meningitis.
Up until that time, we had no positive diagnosis or why to treat him effectively.
Andrea Pierce, Lexington Ambassador
When Andrea’s mother, Nancy, was only 26 weeks pregnant it was discovered that she had developed a condition called “severe pre-eclampsia”, and that it was imperative that the baby be delivered in order to save both of their lives. Up until that point, Nancy’s pregnancy had been uneventful. She was in excellent health when she became pregnant, and had received pre-natal care throughout the pregnancy.
Andrea was born at Forsyth Memorial Hospital by emergency C-section on February 27, 1996, weighing just 1 pound 12 ounces. She stayed at the Neonatal Intensive Care Unit there for the first 3 months of her life.
It was discovered in the last month of her stay in the NICU that Andrea had a condition called PVL (similar to a stroke), a complication of prematurity and pre-eclampsia which can cause cerebral palsy (CP). She was diagnosed with CP by her first birthday, and is affected in her right arm, trunk muscles, and legs. Andrea cannot walk, but has been driving a motorized wheelchair since the age of 3 ½.
Andrea has an independent and fun-loving spirit which touches everyone she meets. Today she is a happy, intelligent first grader at Welcome Elementary. She is reading, writing and using a word processor and Apple computer, and has lots of friends. Andrea loves riding horses, attending Brownies, and being involved in the Awanas group at her church. She had a blast when she recently attended her very first sleepover party!
Andrea hopes to be a teacher when she grows up.
Madeleine McGuire, Winston-Salem Ambassador
My husband and I had long dreamed of having a family. I had been taking my folic acid as advised by MOD, worked to eat right and was pretty healthy. We were overjoyed in early September to find out we were expecting. In mid-October, we discovered we were having twins. Once we got over the shock, we were twice as excited. My due date was June 1st, far in the distant future and it was fun to plan and dream about these two little lives.
My first trimester was not much fun, I was so sick. Mid way through my second trimester, I felt less sick, but I began to notice these occasional little twinges. My stomach would sort of ripple. But it didn’t hurt so I didn’t think much of it. Sometimes I would have a bunch of “little squeezies” in a row, though, and I remember telling myself, “It’s okay, babies don’t just fall out.” How wrong I was!
At twenty weeks, my husband and I went out of town to a friend’s wedding. The whole trip my stomach rolled and rippled, not painful, not organized, but I began to think maybe something odd was happening. I told my sister-in-law about my “little squeezies” and she told me I was having contractions! “No way,” I said, but she insisted I call the doctor. He asked that I come right in and upon examining me, discovered I was already dilating.
The next three weeks were a blur. I was put on medication to stop the contractions. They made me shaky and nervous and they didn’t work. I spent four days on IV drugs in the anti-partum ward, a wing of the hospital full of women desperately trying not to have their babies. I went home, the contractions would “organize” but NEVER hurt! I would go to the hospital, the nurses would check me and send me home. We made five trips in three weeks.
On the last trip to the hospital, a Sunday night, the nurses discovered I was further dilated so they put me on stronger IV drugs, gave me shots of steroids to develop our daughters’ lungs and I stayed. Magnesium Sulfate is a drug that causes confusion, but I vaguely remember a doctor coming in to discuss the consequences of delivering at 22 weeks, my babies’ current gestational age. The nurse said it would take 24 hours for the steroids to have an effect. I remember praying for just one day for my babies. We got 36 hours; time for the steroids to work and time for my girls to become 23 weekers.
I have little memory of anyone telling us about micro-preemies. I knew it was way too early for the girls to be born and I just set my heart on waiting. Bill, however, remembers being asked to decide if, given the grim statistics, we wanted the doctors to attempt to resuscitate the girls or hold them and say good-bye. He decided if they were born pink and wiggly, we’d go for it.
Madeleine came into the world at 6:37am on a cold and rainy Tuesday. She was 17 weeks early, weighed just one pound, three ounces and was pink and wiggly. A few minutes later, Alison appeared, also pink and wiggly, weighing one pound, three-and-a-half ounces. It was the happiest day of my life. Knowing so little about prematurity, the grave situation our 23 weekers were in and the wild roller coaster ride we had just entered, my husband and I rejoiced that our precious daughters were born alive. It didn’t take long for us to realize the precariousness of our girls.
The first time I saw Madeleine in the NICU, she was covered in plastic wrap, even over her head. I was so afraid that she would suffocate! The nurse explained that she was on a ventilator, she was not in any danger, not from the plastic wrap, anyway. It was there to keep her skin from drying out, but it looked so strange. Alison was under bili-lights and wore cute little “sunglasses.” There were a multitude of tubes, wire and monitors surrounding these tiny little creatures. But they were beautiful and perfect, every finger every toe, each little feature in miniature. Both of our girls received several doses of surfactant, a substance to help keep their lungs from sticking together when they breathed (thanks MOD!)
The first twenty-four hours were “the honeymoon,” fairly uneventful, but it wasn’t long until things fell apart. We had so many problems those first few days, but we were so lucky to have a level three NICU, equipped to cope, or try to, with the needs of our tiny girls (More thanks, MOD). We were devastated when Alison, on Sunday afternoon, lost her fight. She had several bacterial infections and a massive brain bleed. We were so unprepared to plan a funeral for our baby.
On Tuesday, Madeleine’s one week birthday, the neonatologist asked to meet with us. We walked down a hall into a little room, there were several other people in attendance. My heart sank; this could not be good. The doctor told us she was sorry for our loss, but, we needed to prepare for another one. She listed all the things that were wrong with Madeleine, most of all, the vent was up as high as it would go, pushing in the air any harder would blow up her lungs, but her oxygen level remained dangerously low.
She was not doing well, the doctor said, and she had a significantly less than 50% chance at surviving.
Madeleine, however, chose not to listen! The next weeks were touch and go, good days and bad, on the roller coaster ride. There were so many days we thought we just couldn’t do it anymore, but there was no choice. Fortunately, we tended to fall apart on different days, so we could keep each other going.
It was difficult trying to be parents in the NICU, there was so little we could do. Because she was on an occilating ventilator, we could not hold our daughter. After 24 days, Bill and I each got to hold her once, but then we had to wait another month to hold her again. We could change her diaper, though, and take her temperature. I even found a catalog that sold clothes for one pound babies. It was so exciting to buy her clothes!
We had many meeting with the doctors during which they explained all the bad things that happen to preemies, cerebral palsy, brain damage, blindness…The “positive outcome rate” for 23 weekers was not great. I remember one doctor telling me that what ever it might be, we would help Madeleine develop her full potential. We began to realize that this roller coaster ride was not ending any time soon.
After 122 days in the NICU, we got to take our daughter home. She weighed 4 pounds, 13 ounces and was 16 inches long. And she came equipped with an oxygen tank, a cardiac and breathing monitor and 9 different medications! And we didn’t even get a nurse! We were terrified of this responsibility, but thrilled to be taking Madeleine home.
The roller coaster ride was far from over. We had to figure out how to work the oxygen tank and the monitor. There were monitor alarms to deal with, when her breathing rate or heart rate got too low. And she was re-hospitalized twice in the first month, once for breathing difficulty and the second time for surgery on an infection in her hip joint, of all places! We had at least two doctor appointments a week to juggle. Going anywhere was a monumental ordeal, putting her on portable oxygen, moving the monitor, packing her all up in a huge stroller. All her “stuff” went with us where ever she went. She was on oxygen until she was two years old so eventually we began to feel like pros.
I wish I could say that it soon got easier, but it didn’t. We had issues (and still do!) with gastro-esophogeal reflux, oral motor and feeding problems, developmental delays, and at age two, Madeleine was diagnosed with a hearing impairment. For her first three years, it felt as if almost every day was a battle. We wrestled with schedules, eating and sleeping, doctors, insurance, therapies… And even a mild illness was a major crisis. Her first ear infection found us in the emergency room because she quit eating and drinking. This child was a full time job and then some!
As Madeleine has gotten older she has become an easier child to manage. She is now a bright and sunny four-year-old. She is still developmentally delayed, but she’s catching up. She loves to sing and dance and play with her dolls, and she is passionate about her preschool at The Children’s Center. We still have lots of issues remaining from her prematurity. Eating remains a challenge for her due to muscle problems, a reshaped mouth from long-term intubation and sensory problems. We just had yet another surgery to work on her vocal cords, and there will likely be more to come. But she is a happy child and joy to have.
We were so fortunate to have really good insurance. Our closest calculations have Madeleine’s medical bills at close to 250,000 dollars! 122 days in intensive care is not cheap! Add on the take home equipment, medications, doctors and therapists and it adds up quick. At her high point, Madeleine had six doctors and several therapists looking after her, most of which was covered by our insurance. All of this intervention has given our daughter a tremendous boost and we are hopeful that she will continue to become more and more “typical” but it is a tremendous expense. Multiply that cost times all the tiny preemies who survive, and the financial toll is huge. It’s easy to see that reducing prematurity is a great “cost cutting” device, and it will be a great benefit to so many children.
Becoming the parent of a preemie was never part of my dream of parenting. I wouldn’t trade my daughter for the world, but I will always feel guilty that she has gone through this ordeal and will forever carry the scars. I will always remember my angel and I will always wonder what if… was there anything I could have, should have done?
My heart will always hurt when I see twins and know one of mine is gone. No family should have to go through this. My thanks go out to March of Dimes for all they have done to help my child survive and all they hope to do to ensure that other babies can be born strong and healthy.
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