This Saturday, April 25th, my family and I will be walking five miles to save lives. Each year I walk as the team captain for Team Emma, a March of Dimes March for Babies team that raises money in honor of my daughter Emma, who was born two months early in 2004.
This year fundraising has been incredibly difficult for Team Emma.
Although my reach through social media, blogging, and online marketing reaches well above 8,000 people, only $400 has been raised so far with just days to go. Last year reaching out to friends and family alone, Team Emma raised nearly $1500. While the economy is hitting everyone hard, it is making fundraising for non-profits nearly impossible.
The March of Dimes provides funding for the research and development of life-saving innovations and education, which are the very things that saved Emma’s life five years ago. Their online education provides mother’s with a way to find answers to their pregnancy concerns and throughout the nation the March of Dimes emotionally supports thousands of families who spend weeks and months with their desperately ill newborns in NICUs.
The original goal of the March of Dimes was to eradicate polio, which it did one dime at a time. Taking into account inflation, I am asking that everyone who reads this consider contributing to the campaign to give every baby their full nine months and a fair chance at a healthy life by contributing just one dollar.
Together we can save lives.
To learn more about Emma’s journey into this world, read Unexpected Delivery.
To find a walk near you go to March for Babies.
Interested in knowing what life is like with a newborn in the NICU, read on…
I do not often write this part of my story. I have a healthy five year old daughter, and so telling this tale often feels like unwarranted complaining. It is also a very difficult story to tell.
Because I went into labor at work and was convinced, partly by my incompetent OB, that I wasn’t actually in labor, I drove myself to the hospital that afternoon. My husband was an hour away at work and the rest of my family was four hours away when the doctor looked at me during my internal and said, “Oh no. No. Amy, this is not good.”
These are not words that any pregnant women ever expects or wants to hear.
The next hour is a blur. I was injected with steroids that would attempt to mature my daughter’s lungs in the hours we had left before she arrived. I was also put on magnesium sulfate which dropped my blood pressure down to nearly nothing making it difficult to see or hear clearly and impossible to even lift my head from my pillow. My entire body felt as though it was on fire. And yet the labor continued…
At some point during the night the neonatologist was brought in to prepare me. I was given a description of the child I would soon deliver. I should expect a tiny baby, about three pounds, and the chance that she would breathe on her own was slim to none. There would be days if not weeks spent in the hospital, and possibly she would be transferred to a larger facility. The next 48 hours could bring radical changes. Brain bleeds, stopped heart, stopped breathing… I should be prepared for all of these things. They also did not know the cause of my labor, so there would be tests…
At 3:19 a.m. on February 26th my daughter made her bold entry into this world, screaming, her lungs filled with oxygen. She was four pounds, 8 ounces, and more than 18 inches long – a giant among preemies. But despite her size, her body had only had 32 weeks to develop the skills necessary to survive outside of the womb, and 32 weeks is not enough. It just is not enough.
Every baby needs a full nine months gestation. Complications from a premature birth is the number one cause of death in the first year of a child’s life. The rate of premature birth has reached a historical high in the last five years.
Emma needed her lungs cleared with paddles to the back, but thankfully she was able to breathe with only the help of oxygen. However, the next three weeks were torture for us, two unsuspecting 26 year old first time parents. I was not allowed to nurse my child because she could not afford to expend that energy nor could she spend that much time out of her incubator. I pumped, but having no stimulation from my baby meant that my supply was too low to keep her alive. We supplemented. From time to time she could not eat at all and would be fed via tube for days until she regained strength.
Her thin, frail skin peeled off in bloody patches in response to the tape needed to hold tubes and wires in place. Monitors wailed periodically as she simply stopped breathing several times an hour and her heart began to slow. Each time she was allowed outside of the incubator, her temperature dropped, one time as low as 95.7 degrees….she risked dying of hypothermia.
Doctors kindly informed me within the first day of her birth that perhaps she had Downs Syndrome or Fragile X. I asked what it meant to have a daughter with Fragile X. I was told that she would never reproduce. I had been a mother for less than 24 hours…
A pediatric cardiologist was brought in and found a hole in Emma’s heart along with two other heart conditions. I was given her card and told that I would be seeing her often. Emma may need open heart surgery in her first year….
On three separate occasions we were told we could take our daughter home with us, and then denied. One time we had gone so far as to strap her into her carseat when the doctor changed his mind and ordered her back into the incubator for at least another 48 hours. Our hearts broke over and over…
Within the first year of her life, Emma’s heart problems literally healed themselves. She learned to hold her temperature and remembered to breathe, and three weeks after her birth she came home with us, monitor free. Through a series of tests, she was cleared of any specific genetic defect, and we were referred for more testing, which showed nothing conclusive. We stopped going for follow-ups. Our daughter is perfect to us just the way she is. We didn’t want to know any more.
But none of these things mean that life is easy for a premature child. She did not get her first tooth until she was 15 months making feedings and nutrition a daily challenge. She did not crawl until 11 months, walk until 18 months, and still at five years shows signs of gross motor function delays. Taking her to playdates and watching her sit, unable to interact with her peers, broke my heart every day.
Emma’s story would have been radically different if she had been born just a few weeks later. Please help Team Emma. Please support the March of Dimes.