When we found out we were expecting fraternal twins, I was told they may come a few weeks early and to plan to be into the Neonatal ICU for a few weeks – a month at most. My husband and I mentally prepared ourselves to spend a little time in the NICU while all the time convincing ourselves I would make it as close to term as possible.
I saw my OB/GYN every four weeks on the dot and was never referred to a high risk specialist because my pregnancy was progressing perfectly. I did everything I was supposed to do – I took my prenatal vitamins, I ate as healthy as possible despite morning sickness and horrific reflux, I slept and rested as much as my exponentially growing belly would allow. In my mind, I was on track for a perfectly normal delivery.
In the wee hours of Halloween morning 2009, I awoke with a dull backache. I really didn’t think anything about it as I had already gained 40 pounds and was gaining more with each passing week. As the hours wore on, the backache became a little more intense and seemed to be coming at regular intervals. The thought of preterm labor quickly entered and exited my mind as my body didn’t hurt like I thought labor would. And besides, I was only 24 weeks pregnant, there was no way I could be in labor.
I had just seen my doctor three days prior for my 24 week check up. Both boys looked beautiful and healthy. I decided to wake my husband and make a call to the doctor to be safe. I dialed her number at 3:00 am on that Saturday morning. She asked me lots of questions and asked me to come in for a quick check. She said she would probably send me right back home but wanted to check me out to be safe.
We made our way to the hospital. I still wasn’t in huge amounts of pain – it didn’t hurt like I thought labor would hurt. I remember thinking that I could possibly be spending the remainder of my pregnancy on bed rest until my due date in February. I wasn’t thrilled with the thought but entertained it anyway.
We arrived at the hospital at 3:58 am – I still have the parking ticket that marks the beginning of our journey. No one in labor and delivery triage moved incredibly quickly upon my arrival. They knew I was coming and told me they would do an exam, perform a fetal fibronectin test, and make a plan depending on the results.
While my husband was completing the hospital paperwork, I was checked and learned I was 4 centimeters dilated. Triage erupted into high speed action. IVs of magnesium were started and I was practically placed on my head to take all pressure off of my cervix. We were supposed to attend a Halloween party later that day and here I was in the hospital in labor at 24 weeks gestation. I was in a nightmare as the delirium from the magnesium began to set it.
I was rushed to labor and delivery. Within 20 minutes on magnesium, I quickly progressed to 6 centimeters dilated. The pain was setting in. The reality that our life was being turned upside down with each passing second was setting in. This couldn’t be happening to us. We hadn’t done anything wrong. I still had weeks left in my pregnancy.
A NICU nurse was sent with the daunting task of telling us what our future could hold. There was a very real possibility the boys would not survive delivery. If they did, they could die shortly after birth. If by some chance they made it to the NICU, they would be connected to lots of tubes and wires until at least their due date sixteen weeks from now. If they survived the NICU, babies born at 24 weeks gestation have a very grim outlook. They could have severe cognitive delays, be blind or deaf, have lots of handicaps….her list grew longer and longer.
The heart rate of each boy began dropping with each contraction and the decision was made to perform an emergency c-section. Just seven short hours after the backache began, Joseph entered the world at 7:41 am weighing a mere 2 pounds 1 ounce. Campbell followed a minute later weighing 1 pound 15 ounces. Both boys were exactly 12 inches in length.
The delivery room was silent except for the sounds of the NICU teams trying to save each boy. I briefly saw Joseph as he was whisked to the NICU in a transport. He was so tiny. I only saw the top of Campbell’s head in the delivery room. I wasn’t able to see each boy until the next day.
Seeing Joseph and Campbell for the first time was terrifying. They were connected to countless tubes and wires. Their skin was almost transparent and their eyes were still fused closed. They were sick – very sick. When I envisioned seeing my children for the first time, this definitely was not what I pictured.
Their status changed with each passing minute. On day five of life, Campbell was transferred to a local children’s hospital for emergency surgery. The effects of extreme prematurity eventually took its toll on Campbell’s fragile body. While he fought so valiantly, Campbell passed away after 23 days of life. While his short life was filled with tubes and wires, doctors and nurses, all he knew was love. Love from family and friends constantly surrounded him like a blanket. What a warm blanket of love it was – and still is.
Joseph’s NICU stay was a turbulent one. He experienced numerous infections and blood transfusions, countless IV and blood draw sticks. He underwent four surgeries during his time in the NICU. He lost 2/3 of his small intestine due to a horrific infection. We were told to say our goodbyes on many occasions. We learned our beautiful son was hearing impaired. Our 2 pound 1 ounce miracle defied odds that no one said he could or would. He fought a battle unlike anything I have ever witnessed.
After 228 days in the Neonatal Intensive Care Unit, Joseph came home for the very first time. What a beautiful and triumphant day it was. Joseph was finally considered healthy enough to come home.
Joseph just celebrated his fifth birthday. There were many days in the NICU that I wondered if we would ever celebrate his first birthday – much less his fifth. Joseph is one of the happiest, loving, and caring children I know but the effects of prematurity are with him every day of his life. He suffers daily from short bowel syndrome – a result of Necrotizing Enterocolitis that took 2/3 of his small intestine. When we learned of Joseph’s hearing loss, we were told he might never talk. Thanks to a cochlear implant, hearing aid ,and the relentless work of his teachers and therapists, Joseph talks – and he talks a lot.
Joseph’s life is not without struggle. The beauty is that he doesn’t see his life that way. He faces every struggle with tenacity and grace. His drive is persistent and never ending. I am blessed that he calls me Mom.
Today, on World Prematurity Day, we honor all babies and families touched by prematurity. We remember those who lost the fight to prematurity. We remember the babies who only spent a few brief moments in the arms of those who loved them. We remember those who lost the battle after months and years of life.
We honor those who daily suffer debilitating consequences of prematurity. We honor those who experience no consequences of prematurity. We honor the parents and grandparents, aunts and uncles, friends and neighbors who have been touched by prematurity.
You are remembered and you are loved.
A former chorus teacher, Laura is now the NICU Ambassador Director at Graham’s Foundation – a non-profit organization that offers support to families of premature infants. Laura, her husband, Scott, Joseph, and daughter, Emily, live in a suburb of Atlanta. Laura chronicles Joseph’s journey with multiple special needs at her blog, Joseph at Home.