My son was born 7 weeks early. He spent the first 78 days of his life living in the Neonatal Intensive Care Unit (NICU). A dozen nurses helped his father and I take care of him, watching him and feeding him when we weren’t able to be there. They taught us how to hold him, how to feed him, how to change his diaper. They showed us how to swaddle him when he was upset. When he accidentally ripped his nasogastric tube out a dozen times, they showed us how to replace it (though we never really did) so he would continue to receive the breast milk I spent hours each day pumping so he would have as many nutrients as possible.
They comforted me when I would break down into tears because he couldn’t go home as originally scheduled due to an apnea episode shortly before discharge. They cheered for us when he was finally allowed to go home (on a heart monitor). One of them gave him a small teddy bear as a gift for surviving the NICU. A couple of them cried tears of joy for us as we left the hospital and he came to live at home with us. Finally.
When he was born, my son weighed just over four pounds and had a grade IV intraventricular hemorrhage (bleeding into the fluid-filled ventricles of the brain). He struggled with eating and never learned how to breastfeed. When he finally came home, five pounds heavier than his birth weight, I was relieved.
During his stay in the NICU, I relied on the nurses for support and information. I tried to research the terms that spilled from their mouths with ease — IVH, nasogastric, bradycardia, hyperbilirubinemia – -but when I found myself confused I could still go back to them with questions.
I could find support with my friends and family, but when it came to the emotions I felt living with a child in the hospital, I felt lost and alone. Even my son’s father couldn’t understand what I was going through. We had two different experiences; I couldn’t understand his side of it either. He went back to work and could only visit on evenings and weekends.
I had quit my job to be a stay-at-home mom…but I didn’t have a baby to stay at home with. And on days I was too emotionally exhausted to go to the hospital without my partner, I felt overwhelmed with guilt. I should be with my baby. I should be there every minute, just in case. I am his mother and I should be with him.
I saw the purple pamphlets around the NICU for the March of Dimes, but I never picked one up. I thought it was for sicker babies than mine. It was for the two pound triplets who lost one sibling shortly after birth. It was for babies needing surgery and multiple medications. My baby was one of the biggest in the NICU and, despite such a long stay, wasn’t “that” sick.
The truth is that March of Dimes is for all babies. Sick and healthy. Full-term or premature. They work to end preterm birth and other problems that threaten babies. Their goal is for every baby to have a healthy start in life. If something goes wrong, they can offer support and information. They fund the research of scientists searching for the cause of prematurity and what can be done to prevent it.
Today is World Prematurity Day, a day where we seek to educate and bring awareness to the complications of preterm birth. Of the estimated 6.3 million deaths of children under the age of 5 (in 2013), 1.1 million were attributed to complications from prematurity. It is the world’s number one killer of young children. Babies who survive often have lifelong health problems like cerebral palsy, vision and hearing loss, and intellectual disabilities.
Premature birth is a serious health problem worldwide. With more education, research, and awareness, we can lower rate from its current astounding 15 million (1 in 10 worldwide) premature babies per year.
To help celebrate World Prematurity Day, you can visit their Facebook page to read and share stories and videos of babies born too soon. For the United States, you can also check out the premature birth report card to see how your state – and the nation -scores. Donations to the March of Dimes, including those gathered during the March for Babies in March and April, help fund research and provide information to families of babies who were born too soon.
Every baby deserves a healthy start in life. Help us end premature birth.
Do you have experience with prematurity? I would be honored to hear your story.
This is an original post to World Moms Blog by Roxanne of Nevada, USA. You can find Roxanne at her personal blog, Unintentionally Brilliant.