In 2001, after eight years of marriage, my husband and I decided it was time to start a family. We were thrilled about how easily we were able to get pregnant and by Easter we were announcing our pregnancy. Later that spring, an early ultrasound, necessitated by unfavorable results of a triple marker test, revealed we would be having twins. My prenatal care was transferred to the high risk group and I went along with my pregnancy following all the suggestions. I was healthy and my babies were healthy. The doctors shared with us the risk of early delivery with multiples. I had given myself a goal of getting to 34 weeks.
In my 29th week I was visiting the doctor for a routine check up. It was then that things took a turn. It was a Monday midday appointment. I had told my coworkers to expect me back later that day, but I never returned. Instead, I was sent to the hospital because I was contracting and had started to dilate. The labor and delivery team gave me medications to try to stop the early labor. It worked at first and I was sent to the maternity wing for bed rest. By Friday evening the contractions started again and despite all our efforts we were not able to stop them a second time. An ultrasound early Saturday morning revealed that one of my boys was breech so a C-section was ordered. The ER was filled with too many medical professionals to count- all the doctors, nurses, anesthesiologists, etc. I asked my husband to hold my hand and I just closed my eyes. This was not my plan, but my goal was to have healthy babies, no matter what had to happen.
By 8:00am my twins had arrived and were whisked away to the NICU. My two sweet baby boys were born at just 30 weeks. I had only briefly been introduced to Joseph (known then as baby “A”). I hadn’t even laid eyes on Parker. My husband had gone up to see them in the NICU while I recovered from the epidural. He brought back my first glimpse of them on Polaroid pictures that the NICU staff had taken for me.
When I was well enough to go to the NICU myself later that day I was surprised by all the equipment and people bustling around. I had seen the unit through a window during my prenatal birthing class, but to actually be in the unit was a very different experience. All the machines, wires and sounds were scary to me. My babies were so tiny, about 3 pounds each. They had been intubated and had so much tape across their faces it was hard to see what they looked like. This was definitely not how we had planned to meet our precious babies for the first time. My sister had asked me how I could be so calm about their early birth, but there was no changing the circumstances. I knew that my boys were where they needed to be and that they would be well taken care of.
We had to quickly become accustomed to the routines of the NICU- how to scrub in, what the monitors were for, meeting all the nurses and figuring out what the difference was between a fellow and an attending doctor. We had two primary nurses who patiently answered all of our questions without judging us for being so uninformed about the care of preemies. Most importantly, I made it a point to arrive at the unit early in the morning so I could be present for rounds with the doctors.
I had tears at their bedside just a couple of days after they were born. The staff probably thought I was sad to see my babies in the NICU, but they were tears of happiness. I was taken by how beautiful they were. I felt so fortunate to be a mom.
The hard tears came later in our stay. We had gone through weeks with changes in their care- light therapy, C PAP’s, blood transfusions, NG tubes, and countless other interventions. All of those care details went by the wayside the day I got a phone call at home telling me I needed to come to the NICU right away. It was November 2nd, a day I will never forget.
What the doctors had to tell us that day changed our lives forever. Both boys were given routine cranial ultrasounds through the fontanelle opening in the skull. Joseph’s results were not good. He was diagnosed with Periventricular leukomalacia, a damage of white matter in the brain next to the ventricles. We were told he would likely have motor problems because of where the damage occurred and there was a chance he could eventually be diagnosed with Cerebral Palsy. Needless to say, we were shocked and extremely saddened by this news. I have never cried so hard or for so long. We could barely understand this and we had to somehow find a way to share this awful news with our families. My well meaning sister-in-law had sent me an on-line article about PVL to try to help out. Her thought was that “knowledge is power.” The first thing I saw when I opened the link was a picture of a child in a wheelchair. I was not ready to see that yet. After all he was still a tiny baby and we had no crystal ball to see what the future would hold. At that point I resolved to enjoy my boys for who they were and to be a mom. I kept crying, but I realized that worrying about the future was not going to do me any good.
The NICU staff supported me the best that they could. I participated in my boys care every chance I got- changing diapers, checking temperatures, feeding, and bathing. I was so thankful for the little things too- personalized name tags, Halloween pictures, and a snap shot of Joseph sucking his thumb.
We were set up with doctor visits with the pediatrician, eye doctor and the NICU follow-up clinic and connected to the early intervention program for Joseph. It was a whirlwind of activity, but at least we were home and could start being a family.
As the boys grew we could see that Joseph was not hitting his developmental milestones at the same rate as Parker. I would cry before visiting the developmental pediatrician because I knew he was going to confirm our worst fear. It happened at about 5 months, a diagnosis of Cerebral Palsy.
Joseph and Parker are nine years old now. It isn’t easy, but it isn’t horrible. Yes, Joseph has a wheelchair and has significant motor impairments that affect his arms, legs, vision and ability to speak. Cerebral Palsy does not define him though. He is a delightful little boy with an amazing spirit. He likes jokes and books and frogs and typical 9-year-old boy antics. He is a people person and brings joy to all who come into contact with him. Having Joseph has taught us so much about what is really important in life- to slow down and enjoy what we have in front of us.
I think that is what the NICU teaches us. Life is fragile and precious. It’s people that matter most. And having special, caring people around us is what keeps us going.