My pregnancy seemed to be a pretty normal one. John and I had been married for 6 years, and were elated at the idea of adding a baby to our family. We planned the pregnancy, and put a great deal of thought and research into the type of birth we wanted to have. I received prenatal care from a well-respected midwifery practice, had regular check-ups, ate all the right things, avoided caffeine and alcohol and second-hand smoke, and basked in the glow of my pregnancy. I loved my growing belly, and felt overwhelming joy every time I felt the baby move.
It wasn’t until almost 24 weeks into the pregnancy that my world came crashing down. I began feeling poorly, and started to wonder if the pain I was feeling could possibly be contractions. Just after arriving to the hospital, with absolutely no idea of what was to come, I received two of the biggest shocks of my life. First, I found out I was having TWINS! Second, I was in labor and already dilated to 4cm.
Holland and Eden were born four days later on July 31st, 2004, 16 weeks too soon. At birth they weighed 1 pound 3 ounces, and 1 pound 5 ounces, and were just under 12 inches long. They were perfectly formed, and to me, already beautiful. There was no infection, no abnormalities, and never an explanation for why they came so early.
We were told prior to their birth that the chance they would both survive was slim, and that IF they did survive, it would likely be with some degree of disability. Looking back now, I don’t think that this information ever really sank in. We knew from the beginning that we desperately wanted them, and that we would love them whatever the outcome would be.
Prematurity is not something you can plan for. It is something that you gloss over when you are reading “What to Expect when you are Expecting.” You think that it won’t happen to you, that it CAN’T happen to you. When it does, it is just pure luck that lands you in such a place as the NICU at St. Joe’s. Our girls spent the first 110 days of their lives in the NICU. During that time we certainly had some very long and very sad days. Both girls were transferred out for PDA ligation surgery on their hearts. They both underwent laser surgery on their eyes for retinopathy of prematurity. We lived through more than one infection, one which Holland almost didn’t survive. Both had some degree of bleeding in the brain. Both needed a lot of coaxing to learn to eat and grow. Many people refer to the NICU course of a 24-weeker as a roller coaster. I don’t like that analogy because we choose to go on roller-coasters and we enjoy the thrill. There are no thrills in the lows of the NICU… just grief and devastation.
But our time in the NICU was also filled with small moments of happiness, and even times of great joy, many of which were made possible and enhanced by the staff who worked with our babies. I clearly remember the nurse who asked if I wanted to hold each baby for the first time, and how much work they would do to get us ready for kangaroo care. I remember the care with which they taught us how to touch our babies, how to change their tiny diapers, how to take their temperatures. I remember a special nurse who would take pictures of them doing cute things at night, when we weren’t able to be there, and taping them to the isolette to surprise us when we came in the next day. I remember the excitement of our rescue team who came to another hospital to pick Eden up after one of her surgeries, and how happy they were to have her back safe and sound. I remember the doctors giving hugs and high fives when Holland’s platelets finally went back up following a nasty infection. I remember, when things were slow in the NICU and our babies were doing well, doctors sitting with us to chat about good places to eat. I remember them listening to our endless questions, and sitting down with us to draw diagrams to help us understand complicated medical issues, never annoyed by our incessant attention to detail. I remember the nurse who helped us give their first baths, and dressed them in real clothes for the first time. I remember the support and encouragement they gave me in pumping and attempting to breastfeed, and how they kept me motivated by always oohing and aawing over the calorie content of my milk. I remember them crying with me over the loss of another NICU baby that we had befriended, and how I realized then that these babies are so much more than a job to this NICU staff. They really and truly care about each baby and family, and they make each tough medical decision just as they would if it were their own baby. I remember that I felt loved…and I don’t think you can feel like that in the NICU of every hospital.
Holland and Eden are three-year-olds now. They are vibrant, loving, and smart, and they are the joy of my life. Our struggles did not end when we left the NICU. We went home on oxygen, and monitors, and with countless doctor appointments for the first 6 months. Holland has had ongoing issues with her lungs and her vision. She has had surgery on her eyes, and has been hospitalized several times with pneumonia and respiratory illnesses. She has been diagnosed with mild cerebral palsy, and did not start walking until after she was two.
Eden was diagnosed with profound bilateral hearing loss at 6 months of age, and underwent a cochlear implant surgery when she was 14 months old. She has more severe cerebral palsy, and will likely never walk independently. Both girls have had ongoing issues with eating and growing, and feeding them has always been a source of worry and stress.
While I feel like it is important for the general public to be aware of the ongoing issues that extremely premature infants face, I really hate listing their disabilities or medical issues when describing them. Terms like “chronic lung disease,” or “profound hearing loss,” or “cerebral palsy” do not give you any insight into the little people that they are becoming. Those things are such a very small part of who they are. I’d rather tell you about how Eden’s smile lights up a room. About how they both say “I love you Mommy” and give the absolute BEST hugs and kisses. About how their excitement over the simplest things is completely contagious. About how they love to play ring around the rosie, feed our dog way too many milkbones, and each hold one of my hands while we walk around the living room pretending were going on an adventure. They love to dig in the sand, run full speed through the sprinklers at the water park, sing along to their Elmo videos, and think we are the absolute best parents ever for taking them to meet Clifford the Big Red Dog.
I am not a person who believes that everything happens for a reason. Sometimes bad things just happen. What I DO believe, is that when bad things happen, we can become better people because of them. We can learn and grow from them. We can take the negativity and turn it into something positive. I am a better person because of my kids and what have gone through following their traumatic birth. I do not take life for granted. I don’t sweat the small stuff. I have learned to appreciate every step of progress they make, no matter how small it may seem. I am better able to support people who are going through similar circumstances. I am more compassionate, and a better advocate for my children’s needs than I may have been otherwise.
I addition to all of that, I have had the opportunity to meet so many incredible people that I would never have known otherwise, and my life is richer because of them. Thank you so much to the NICU staff of Saint Joseph Mercy Hospital. For the dedication and compassion you show to the babies and families you care for. And for giving us so much to be thankful for.