In honor of Parents of Preemies Day on May 4, we’re honored to have preemie mom Rebecca from Preemies Today sharing her family’s story on our blog. Mom Meet Mom is a proud sponsor of the 2014 Parents of Preemies Day Boston event and believes that all preemie parents deserve all the support they can get.
I remember the moment I discovered I was pregnant. My husband and I had been trying to conceive for about six months. We were delighted to finally see the positive test result and had no idea what was about to unfold.
Over the course of the first trimester, my husband and I followed my pregnancy through the pages of a book. He rubbed my slightly bloated belly as we read about our baby’s size in terms of fruit and learned about the baby’s development. We breathed a sigh of relief when the first trimester ended (15-20% of pregnancies miscarry during the first trimester). We thought we were in the clear.
At the onset of the second trimester, my husband and I dared to dream about our near future. We pictured a comical and hurried drive to the hospital when I went into labor. We imagined our baby’s birth and pictured what it would be like. We laughed about how big I was going to get and joked about all the possibilities for absurd pregnancy pictures. Sadly, none of these things happened for us.
At the twenty week ultrasound, we discovered we were having a girl. Our baby girl was breech. The tech was unable to see and document her spine. We were reassured that things were fine and the documentation was a formality. I was instructed to return in two weeks for another ultrasound.
The two weeks passed quickly and the ultrasound arrived. My baby was stubborn and wouldn’t budge from the breech position. The attempts to change my baby’s position were futile. I paced the hallways, contorted into strange positions, and let a perinatologist press on my stomach. But, my baby stayed put and her spine remained hidden from view. Once again, I was told to return in two weeks for another ultrasound.
I had scheduled an appointment with the obstetrician before the next ultrasound. I was twenty four weeks into my pregnancy when I arrived at the office out of breath and sweating profusely. My blood pressure was alarmingly high. The doctor’s narrowed eyes conveyed his concern as he proceeded with the examination.
Afterwards, my husband and I were summoned to the obstetrician’s back office. We sat in front of his large wooden desk and squirmed uneasily like two kids in a school principal’s office. The doctor gently mentioned preeclampsia was a possibility. He asked if we had any questions and provided instructions for further lab work.
My husband and I shrugged it off. We told ourselves it was a mistake. Pregnancy complications are the kind of thing that happen to other people… not us. I didn’t have any risk factors and did everything I was supposed to do. I told myself things would be fine. I convinced myself the doctor was just being cautious. We did not have much time to dwell on things. We needed to hurry off to the third ultrasound appointment.
At the ultrasound, the tech worked while we joked and giggled about our headstrong baby. Our jovial demeanor dissipated and panic set in when the tech asked, “Have you been losing fluid?” and began taking measurements. Without a word, the tech left the room for several minutes during the ultrasound.
When the ultrasound was finished, the tech ushered us into the perinatologist’s office. The doctor explained that my baby had lost weight and my amniotic fluid was low. My placenta was failing. She instructed us to go ahead with the previously planned lab work and we would meet again on Monday.
The meeting planned for Monday never transpired. Over the weekend, I was admitted to the hospital via the emergency department with severe preeclampsia.
The lab work revealed that I was stable enough to continue my pregnancy and a new plan was devised. Hospital bed rest was ordered and delivery at thirty two weeks was the best case scenario. I was not leaving the hospital until I had my baby.
The day my baby reached twenty six weeks gestation, my body had enough. I developed HELLP and my baby had reversed end diastolic flow in the umbilical cord (more was coming out of her than going in). We were both in danger.
Our baby, Charlie, was born at twenty-six weeks and weighed 790 grams (just under one pound twelve ounces). Due to the use of general anesthesia during my emergency c-section, my husband and I missed our baby’s birth. However, my husband did get to walk with her to the NICU and he said she screamed the entire way. A good sign. We were told she would not be able to cry.
After Charlie was settled in the NICU, my husband returned to my bedside with her picture. The picture was how I first saw my baby. I was not well enough to visit her for two days. I did not get to hold her until she was ten days old.
Charlie resided in the NICU for three months where she walked a fine line between life and death. On it, she precariously danced two steps forward and one step back or vice versa. I didn’t know what each day would bring. Every day, I held my breath, hoped, and waited. I woke each morning and whispered, “Please don’t let anything bad happen today.”
Meanwhile, I learned the nuances of our new world and watched as painful procedures were performed on a regular basis. I kept an almost constant bedside vigil. It was the only thing I could do for her. My heart broke each evening as I had to say good night and return home without her.
Finally, the day arrived that we got to take Charlie home. I sobbed silently as I carried her past the heavy NICU doors. I remember thinking, “It’s over, it’s finally over. Now we can get on with the rest of our lives.”
Little did I know at the time, it was only the end of the beginning.
After Charlie had been home for a few months, it became clear she had several unexpected issues. Our baby experience was anything but normal. She was diagnosed with motor delays, sensory issues, minor vision concerns, and a feeding disorder.
Questions constantly bounce around in my head.
Will she reach the next milestone? Why is she having an issue with this? How can I help her? What are the treatment options? Is this illness or issue going to be a cause for another hospital stay? Will she ever catch up?
This month, Charlie will turn two. In the preemie realm, two is a special age. It is the age that preemies are supposed to “catch up” with their full term peers. It is the point in which her age is no longer adjusted to account for her premature arrival. Two is the promised end of preemie hood.
Unfortunately, Charlie will not be a preemie that catches up by two. Nevertheless, I couldn’t be any prouder of her.
Charlie’s determination and fight has brought her through some very harrowing experiences. She has arduously worked for things that other people take for granted. Despite her difficult beginning and the challenges she faces, I rarely see her without a smile.
After everything my husband, Charlie, and I have been through, we came out the other side and haven’t forgotten how to laugh. Charlie’s early birth challenged me to be better, braver, tougher, and stronger than I ever thought I could be.
With all of its ups and downs, this is the story of how our family came to be. Our world has been markedly different ever since.
Parents of Preemies Day is about celebrating our stories and journeys as preemie parents with all it entails. I take pride in our journey. It wasn’t an easy road. Although I never imagined I would find myself in the position to be one, I am a proud preemie parent.
Rebecca Wood is the mother of one and author of the blog Cheering On Charlie. She and her husband reside in northern Virginia with their daughter, dog, and cat. When Rebecca is not outdoors, she can be found volunteering in her community.