Until my daughter Cali was born, I had not really given much thought as to what goes on every day in a hospital. And by that I mean not really appreciated the hard work and dedication of doctors and nurses that save lives and try to make things better every day. But now I had a newborn with some serious health issues and that forced me to face a scarier side of life.
Cali was born with a heart defect called coarctation of the aorta. In simple terms, she had a kink in her aorta that was obstructing blood flow to her lower body. It can be compared to an older person with a clogged artery. As time goes by and if left untreated, the situation worsens and the results can be disastrous.
We found out about this defect during an ultrasound when I was halfway through my pregnancy. What's amazing is the technology that allows us to find problems and address them much earlier. At the time of the ultrasound, Cali's aorta was smaller than the prong of a fork and they had to look through my body to look through hers.
But technology has its limits. Though the ultrasound picked up the heart defect, there were other defects that weren't apparent until after Cali's birth. In the delivery room, the nurses showed her to me briefly before they took her away to intensive care. She looked so tiny; she only weighed four pounds.
While I was recovering from my c-section, my husband Paul came in with Polaroids and a huge smile. "Isn't she beautiful?" He showed me the pictures. I couldn't believe it. Cali was so bruised and swollen, it looked as if she had been in a boxing match. A geneticist was brought in to consult on some of the doctors' concerns about Cali. "Her muscle tone is not good," she said. "It's low, floppy. If you hold her up she'll hang like a rag dog. We'll do some tests." The tests the geneticist ran came back normal. They didn't know what Cali had, but clearly something was wrong.
When she was three weeks old, she finally opened her eyes for the first time. She couldn't open them all the way; they were tiny slits. "She has ptosis of the eyes," the geneticist told us, "droopy eyelids." Another thing to be corrected surgically.
We took Cali to a neurologist when she was three months old. He said all her abnormalities – the heart defect, the ptosis of the eyes, the low tone – all suggested a genetic syndrome, although he didn't have a name for it. The low tone worried me the most. She just didn't move much and she never vocalized or made cooing sounds like other babies her age. I once went to get her from a nap and noticed she had edged sideways. I called my mother-in-law in to see. "Look! She moved!" It was the first time she had changed position in her crib. She was four months old.
By the time Cali was five months old, we had moved to California and were lining up new doctors and preparing for heart surgery. Cali's new cardiologist, neurologist, geneticist and surgeon were all at Children's Hospital Oakland. We first met Cali's heart surgeon about a week before her surgery. He addressed all of our concerns, was confident and had a good bedside manner, a nice change from most of the doctors we had encountered in New York.
The surgery went perfectly and we went to see Cali in the recovery room. It was a little overwhelming with doctors, nurses and residents all coming over to read her chart and check on her. But the flip side to that was that there was a very concerned staff totally devoted to our child, and to all the other kids in the intensive care unit as well. That's probably the biggest thing that stands out in our minds about our experience at CHO. Everyone we encountered, from doctors to nurses to support staff to the volunteer who knitted us a baby blanket, was on board and gave us a comfort level that made going through something like this as easy as can be expected under the circumstances.
So by the time Cali's eye surgery rolled around, we were definitely more comfortable with the whole process and being at Children's Hospital Oakland. As they did before, the hospital gave us a tour of where we needed to be on the day of surgery and gave us a demonstration on a baby doll so we knew what to expect while Cali was in surgery. Thankfully, this operation also went without a hitch. When we got home later that night we were thrilled to see that Cali's eyes, once only slits, were now open enough so that she would no longer have to tilt her head back to see. And the very next day, she started babbling for the first time. She was eleven months old.
After going through what we did that first year, it made me appreciate how fortunate we are to have a hospital devoted to children with incredible doctors and nurses right here in our back yard. So when I found out about the Rowan gala that benefits the hospital, I was thrilled to go and lend support.
Cali is now a first grader who is reading and writing and learning and playing right along with her peers. That scary first year is a distant memory. As our wonderful neurologist at CHO advised us, "Don't put limits on these kids and you'll be amazed at how far they'll go."