I am an English teacher. This may explain my love for names and their meanings, or might just be an excuse for when I search for a connection between a character’s name and his or her role in a story. Read any Jodi Picoult novel or even my blog’s name-inspiration, To Kill a Mockingbird, and you may do the same. This name-personality connection transcends literature, at least in my experience.
My husband and I believe that a name ties intrinsically to an individual’s personality, thanks to our two oldest children. Our daughter, Kayden, is stubborn and strong-willed and physically tough. She stands up for herself and asserts her role in most situations. She is smart, creative, and spiritual. Her name, or its origin, Kaden, means “fighter.” Our second child, our son named Paxton, wears his heart on his sleeve. He loves hard and fast and finds the most harmony through cuddles, sleep, and quiet. Pax, which means “peace,” fits him perfectly. Of course our daughter has many tender moments while our son can flare a temper, but, at their cores, our children embody their names.
This weighed heavily on my mind as we searched for the perfect name for Baby Bus #3. I am the type
of pregnant woman who needs to know two things in order to mentally survive the last few months of pregnancy: I need to know the gender of the baby and I need to know his or her name. I am not one willing to wait for that delivery room “It’s a [fill in the blank]!” surprise, nor am I content to simply tell “Baby” to stop kicking my ribs. I need to know this child, to imagine him or her fully–name and all–for my belly-bonding to really take shape. Skylar, meaning “scholar”, was a possible girl name. She would fit in to her big sister’s love of school. Or maybe Asher for a boy, which means “blessed and happy,” would make a fitting addition.
These thoughts left us completely after our anatomy scan.
About half way through this pregnancy, my husband and I ventured to the OB for an ultrasound and consultation with one of the doctors. These scans had gone routinely with my first two pregnancies, so I wasn’t worried. I made two different envelopes–one for a girl and one for a boy–so we could have an immediate gender reveal with our two kids upon returning home, and off we went. I wasn’t thinking about how different this pregnancy had been already, from on-going queasiness to slower weight gain to a consistently achy sciatic nerve. I wasn’t thinking that this appointment would be any different than the two anatomy scans we’d had before. I wasn’t thinking we had anything to fear.
Our ultrasound tech was super social throughout most of the appointment. She pointed out everything she could, hid the screen when confirming gender, and asked us sweet questions about our two other children. With about 5 minutes of the scan remaining, though, that changed. She became quiet and hyper-focused. I assured myself she was merely concentrating on keeping the baby’s gender a surprise for our family reveal. I smiled at my husband and enjoyed the little printout she gave us before she ushered us down to the exam room where we would meet with one of the OBs. Mike and I were so full of joy from seeing the baby and hearing the heartbeat that my husband and I didn’t expect the mood to so suddenly shift upon the doctor’s arrival.
When the doctor entered the exam room, the same doctor we had for our middle child’s anatomy scan, my husband and I could sense the tension. She sat down on a stool beside the exam table and began listing all that was good: the baby’s skull is forming well, there is no cleft palate, the baby has ten fingers and ten toes, the fluid levels are strong, etc. She was being so specific to tick off every single success of our baby’s development, so careful to hit every positive base that we just knew we were bracing for a “but.” And it finally came. “But the ultrasound tech noticed a shadowy area in the baby’s right lung,” she said. “We would like you to see maternal fetal specialists so they can use their big boy ultrasound machines and check it out. Maybe it is just a shadow. Do you have any questions?”
My husband and I looked at one another and I immediately said “no.”
She continued anyway. “What it could be is something called a CCAM, a lesion in the baby’s lung. But MFM will check it out and let you know for sure. These usually shrink and eventually disappear–if that’s what it is.” And then she sent Mike and me to reception to make our next appointment.
We drove home almost silently. We psyched ourselves up for the fun we were about to have: boy or girl? We pushed those 4 maybe-letters from our minds.
Kayden and Paxton greeted us at the door as soon as we pulled in the driveway. When they opened the envelope revealing this baby, Baby Bus #3, was a boy, Kayden began a triumphant “yay!” and Pax repeatedly asked us what this meant. We smiled, then hugged one another and the kids and my mom and immediately retreated upstairs to do the dreaded Googling. Google CCAM and, most likely, the first site you’ll come to is from the Children’s Hospital of Philadelphia. You’ll learn that CCAM–or congenital cystic adenomatoid malformation–is the most common lung lesion found in fetuses and children and that the outcomes vary greatly. Depending on the size, positioning, and effect on the four chambers of the heart, each baby afflicted with CCAM takes his or her own path to recovery, if recovery is possible. One word came up again and again: cancer. This knowledge, this information is why I said “no” when the OB asked if I had questions. I didn’t want the worry of what might be wrong until we met with the specialists and had a true diagnosis.
The diagnosis was true, though. I could see it the second the ultrasound tech placed the wand to my belly. What normally looks like blank, black space in the baby’s chest cavity looked like cotton, like white smoke. Like it didn’t belong.
We were at our first MFM appointment two weeks after the initial scan. That doctor, who was caring and honest and paternal, told me not to get too emotional. “You worry about the baby, and I worry about you. So don’t worry!”, he insisted. “We will see you in 4 weeks and check the size of the CCAM then. If it shrinks, which most do, you will have nothing to follow up with. If it remains this size or, more unlikely, grows, we will refer you to the Children’s Hospital of Philadelphia.” My husband and our families encouraged me to think positively.
Four weeks. I hardly ate. I tried my best to internalize my nerves and to enjoy my summer home with my 2-year old son and 4-year old daughter, but in the quiet moments–when one or both was napping or they were engaged in their own play–my mind went crazy. When my mind went crazy, my fingers searched for answers. I read blogs and message board and the websites of countless hospitals. I began to learn more about fetal surgery and EXIT surgery and hydrops and lobechtomies than any woman creating life should learn about.
Four weeks–and the most upsetting doctor’s appointment yet. “There,” I said to my husband, as I pointed out the snowy mass in the baby’s chest. “Can’t you see it?” He could. It was still there, plain enough that we didn’t need the ultrasound tech or MFM specialist to confirm it. I began to cry, silently, staring at the dropped ceiling so as to avoid eye contact with my husband or the tech. One sweaty hand clutched one of Mike’s while I kept the other tucked behind my head, fingers crossed. I focused on breathing deeply, keeping my tears away, being strong for this precious little baby who looked so much like his brother via ultrasound that it made my heart ache even more. When the scan was complete, the tech led my husband and me to a consultation room and immediately brought in a monitor to check my blood pressure. “They didn’t do that last time,” Mike said. “They are worried about my blood pressure,” I explained, “checking for hydrops.” I didn’t have hydrops, which was the only good news of the appointment.
“We have a problem” were the first four words that came out of the MFM specialist’s mouth as he entered the consultation room soon after. Not “Hello, I’m Doctor So-and-so.” Not “How are you feeling, Mom?” Nope. We have a problem. From there, I half-listened, half retreated into my own thoughts as he detailed that the CCAM grew quite a bit and that the baby was also measuring small, particularly in his femurs. More to Google. More bad stuff to read. More worry.
Our next step was a visit to CHOP–after another 10 day wait. At this point, I became so concerned with his size, I stopped exercising. I tried to eat more, but my stomach was so upset from my worries that I didn’t get much down. My mindset and nerves cannot be providing the right environment for a healthy baby, I kept telling myself, and that guilt only made both worse.
We finally had a full day of appointments at CHOP: ultrasounds, fetal echo-cardiograms, an MRI, consultations with genetic counselors and nurse liaisons, and so on. You name it, Baby Bus and I did it. It was a long, tiring, emotional day which ended with what I can only describe as a slice of comfort. Mike and I met with a wonderful MFM specialist who confirmed the CCAM, ironically known as well as a CPAM, and explained to us that the baby’s lung is like a tree planted in a garage. I am paraphrasing here, but he described to us that the roots don’t have room to spread out, so they’ll simply remove the garage–or, the bad tissue–and the roots will spread themselves out. He explained that this is done in one of three ways, depending on the severity of the lesion: through fetal surgery, EXIT surgery, or surgery at approximately 6 weeks old. The magic number was 1.0. If the CVR (CCAM volume ratio) was greater than 1.0, fetal surgery was immediate. If the CVR was close to 1, EXIT surgery was likely. If it was significantly smaller, infant surgery was necessary. Inside, I tried to mentally prepare for Baby Bus #3’s CVR. I could see the lesions clearly and I was not medically trained. I knew it was going to be a number I did not like.
I was so wrong. With a CVR of .21 and the four chambers of the heart remaining in place and full, we could wait until we delivered our son at our own hospital, take him home, love him, and then bring him in for surgery weeks later. My heart swelled. Yes, his femurs were still measuring small, and his weight was a little below average, but his CVR was such a small fraction that those other issues failed to seem significant.
Mike and I drove over the bridge back to New Jersey with lighter minds and real smiles on our faces. I could feel a sense of peace. I also felt something break–a wall I had slowly built around me. It seemed like almost from the start of this pregnancy, even before I knew of the CCAM, I was protecting myself and the baby from something. I was more distant and more irritable, less patient and less open. For months, I hadn’t felt like me. Now I did. I knew we had a long road ahead, one that included weekly scans to check the baby’s growth and that eventually led to a lobechtomy on part of Baby Bus #3’s right lung, but I also knew that I was open to taking that road with my husband and my family and my friends. I realized that I didn’t need my tears to stay silent and that I didn’t need to worry in my head. I could talk about it. I could feel openly and honestly.
A few weeks later, Mike and I took our two oldest children to Disney World. Aside from the 100 degree heat and my 7-month waddle, I enjoyed myself more than I could have a month before. Baby Bus #3 was strong. He kept that CCAM from getting too big, I was sure of it. I continued to break down my wall. I reconnected even more with my husband. I laughed more genuinely with Kayden and Paxton. We had a brilliant, albeit exhausting, vacation as a family of 4.
School started, and our growth scans continued, but the CCAM had stabilized. Before long, we didn’t even need the growth scans. Baby Bus #3 was suddenly in the 40th percentile for fetal size and I could enjoy the last 3 weeks of my pregnancy without visiting MFM. I must have made a pretty good home in there for him after all, because he overstayed his welcome and arrive on Veteran’s Day–4 days after his due date. A neonatalogist was on-call for the delivery, but this baby came out chubby and crying and ready to face the world, bum lung and all.
Within a week of that initial scan months earlier and the discovery that Baby Bus #3 was in fact a boy, I approached my husband as he paid bills online and told him we needed a name. This baby needed a name. I needed a name so my prayers were more real and my connection to him was more eternal. We started from scratch, throwing out all we had liked or loved or disagreed on before. We soon settled on it. A name that means powerful seemed most fitting, and Kellen sure lives up to it.
On January 8th, at 8 weeks old, Kellen had a lobechtomy. The chief-of-surgery at CHOP removed the lower lobe of his right lung. He spent 24 hours in quite a bit of pain, unable to nurse, and connected to a chest tube. By hour 25, however, he was nursing, smiling, powerful. Mike and I brought Kellen home for the second time on January 10th, one day shy of 2 months old. Many people said this type of journey is harder on the parents, especially on the moms, than it is for the babies. I believe them. I truly believe, though, that Kellen’s name embodies his essence–just like those of his sister and brother.