We are five years post NICU and I still feel so alone some days. I often feel that my friends don’t “get me” and I find myself explaining to strangers why our twins are behaving in a manner that is a little out “of the ordinary”. I hate that prematurity has this kind of a hold on me…I am always waiting for the other shoe to drop when the smallest bump appears in the road. Prematurity is a lifelong journey that 1 in 9 families have to fumble their way through when they deliver their baby early. I never imagined this would be me but despite all my efforts to have a full term pregnancy, my babies were one in nine.
My name is Natalie Gordon and I am mom to my daughter Alexis, age 12 and our boy/girl twins Lola and Landry, age 5. My pregnancy with Alexis is what the vast majority of us are able to experience. I visited my OB/GYN regularly and feedback was always, “You and your baby look great Mrs. Gordon. See you in 6 weeks.” My blood work, blood pressure, and urine results always came back normal and at 40 weeks gestation, I wobbled into my doctor’s office praying for him to say that I could head over to the hospital. But, as “luck” would have it, I had an OB that believed the body would go into labor on its own. He said that he wouldn’t let me go passed 42 weeks but that he wanted me to go home and wait. At 42 weeks, I was admitted into the hospital and 12 hours later, at 5:34pm, I delivered our healthy, 7 pound 5 ½ ounce little girl. She was perfect and three days later, we were discharged from the hospital as a family. We got to take newborn pictures, put on her “going home” outfit, place her in her car seat and head for home. It was the epitome of the perfect pregnancy… little did I know how badly I would yearn to be able to experience a full term pregnancy again.
Seven years later, after all attempts to experience another perfect pregnancy, my husband and I found ourselves working with an Infertility Specialist. I had stage 4 endometriosis and ovarian cysts that were preventing us from conceiving again. Wanting another baby so badly, we decided to do IVF and two months later we were not only pregnant with one baby; we were expecting twins! However, it wasn’t time to celebrate. The day we found out we were having twins, the problems started. We discovered a blood clot in my uterus, lost one of their heartbeats for 5 days and wondered for the first 10 weeks of the pregnancy if they were even going to make it. But then, as quickly as it all started, the complications stopped. I was released from the specialist to my regular OB/GYN and rocked along until I hit 24 weeks. That is the day the floor dropped out from under my feet and my world was forever changed. Our precious babies were born at a meager 1 pound 9 ounces and 1 pound 10 ounces and they were literally clinging to life. The first time I saw them I peered through the portal door of their isolettes unable to touch or hold them and thoughts flooded my mind. How did this happen? What did I do wrong? Was it something I ate or drank? Was I trying to do too much? I was devastated…this must be a dream. It has to be a dream because prematurity only affects those who drink, smoke or do drugs while they are pregnant. It only affects those that do not get prenatal care or those who ignore what their doctors are telling them. It doesn’t happen to women that eat right, cut out all caffeine, stay in shape, go to all of their doctor’s appointments, and stay away from alcohol and drugs. Or does it?
I can tell you that I chased this for nearly four years. I just had to find out a reason why I delivered prematurely and I just knew I was going to get the answer…but, I never did. I did everything right yet everything still went so wrong. I finally had to accept that it was nothing I did. My babies were just part of the 1 in 9. Think about that statistic for a minute. 1 in 9 babies in the United States are born prematurely. To bring that into perspective, the next time you are standing in line at the grocery store, 1 out of every 9 people waiting in the checkout line will be burdened by prematurity. The next time you take your child to their classroom, at least one of his or her classmates were born prematurely. It affects women of all backgrounds, overweight or thin, short or tall, African American, Caucasian, Hispanic and Asian. We can all fall victim to prematurity which is why we must raise awareness. We must try and understand what increases our risks to deliver early and find ways to try and prevent it. In the end, the reality of delivering a premature baby is like drawing straws. This easily could have been you. Help us to raise awareness about prematurity by learning about it. If you stop to think about it, you have been affected by prematurity in some form. You may not have delivered your baby prematurely but you know someone that did. Ask them about it…what they went through, how they were forever changed by it.
I can honestly say though that prematurity has ended up blessing us beyond measure. Although it entered into our lives like a tornado leaving bits and pieces of us all over the place, it taught me how to live in the moment and to recognize the “small things”. Lola and Landry have gone from six specialists and all major disciplines of therapy to pre-school and learning alongside their peers. They have overcome more obstacles in their 5 years of life than most of us will have to face in our entire lifetime. They may have to work harder than the child sitting next to them but their determination and eagerness to learn takes over. Our family has grown exponentially since their birth and for that, I wouldn’t trade a thing.
Henry Ford was quoted once as saying “coming together is a beginning. Keeping together is progress. Working together is success.” Together, we can change the face of prematurity.
Natalie Gordon is Program Facilitator for NICU Helping Hands in Fort Worth, Texas. She works directly with families during their stay in both the antepartum unit and the NICU, providing not only bedside support on a daily basis but group sessions for parent support and educational sessions weekly as well. Natalie is the mother of Alexis, age 12 and Lola and Landry who were 24 week premature twins.