As I write this late on Sunday, I cannot believe how much has transpired in just a weekend.
Scarlett's 2 month Well Baby appointment was scheduled for December 17, the day after her 2 month birthday. We had minimal concerns to bring to the doctor, as most new parents do: Is she gaining enough weight? Is she hitting her developmental milestones? Is that color poop normal? Then, there was a bruise.
Scarlett had developed a small bruise on her forehead in early December. We had no idea where it came from. In the beginning, we assumed she had hit her head somehow with her own hand or a pacifier. Of course, we had never done anything that would have caused an injury, and felt awful that something had snuck by our overly-vigilant eyes to bump her. We waited for it to pass, as bruises do.
Days kept passing, and the bruise did not fade. It would lighten when she was calm, but turn dark and raised when she was angry and crying. We noted it and decided we would ask at the appointment we had already scheduled, just to be careful.
By the appointment, there were three small bruises. The medical assistant noticed them immediately, and we said yes, we wanted the doctor to take a look at that, since it isn't going away. Our doctor came in, excited to see her tiny patient (everyone is always excited to see Scarlett!) She began the exam, and as she noticed the bruises, she started to feel the fontanel, or soft spot, on Scarlett's head. It was at this moment that our appointment made a u-turn.
The doctor, a family practitioner, told us she wanted to bring in a pediatrician to check Scarlett's fontanel. A few minutes later, the pediatrician and our doctor were conferring in the hall about our baby's head. We looked at each other as I nursed Scarlett in the office, ready to hear whatever they were going to tell us, but not expecting anything serious. Scarlett was perfect, behaving normally as she had all along.
When the doctor returned, her face was obviously concerned. She had already called to arrange a CT scan; we were to immediately walk over to radiology, where they were waiting for us. Scarlett fell asleep as they strapped her to the huge x-ray machine, and a short time later we walked back to the doctor's office.
When the doctor returned to see us, she said "Something is wrong with her." On the CT scan, she said, there was some signs of bleeding in her brain. She wanted to refer us to the neurosurgeon at Lucille Packard Children's Hospital at Stanford. As she left the room, we waited in shock; we did not bring her a sick baby. We talked about how our next week would be tight, scheduling a neurosugeon visit in Palo Alto along with work and Christmas shopping.
When she returned a few minutes later, she began to talk quickly: "You are going to drive to the Washington Hospital ER, and they will prep her for the ambulance ride to Palo Alto." Ambulance? Where did that come from? "Wait, ambulance? We are going right now? We can't drive her?" "Yes, now. It's better for her to go with the ambulance." She didn't let us dress her, just a t-shirt and socks.
We called my parents to meet us at the ER. It killed me to make yet another frantic phone call to my poor mom. As we drove the short distance to the ER, we were in shock and disbelief. Our baby was NOT sick. She was learning to smile, lifting her head, loved to listen to music. Not sick. What's the rush?
At the ER, they were waiting for us. We were rushed back to a room, where an IV was started. It was too much for me to watch the well-meaning but ill-prepared nurses jab at my 9 pound baby. After a few minutes of holding her hand and whispering my love for her as she screamed and writhed in pain, I had to leave to let Chris hold her.
Then began the questions: How old is she? Was she full term? Did you experience any complications in pregnancy? In delivery? When did you notice the bruising? I was asked the same questions so many times I can't recall.
We learned later that the radiologist at the ER saw the CT images and, with the impression that there was bleeding in her brain, called Child Protective Services with a report of a possibly abused baby.
The transport team from LPCH arrived around 4:45, about 3 hours after our first appointment had begun. They strapped Scarlett to a gurney as they rambled off directions to the hospital. They had brought a large support staff for the small ambulance - 2 EMTs and 2 nurses - so neither Chris nor I could ride with our daughter. We kissed her goodbye and my mom drove us through a horrific rainstorm in Friday traffic across the Dumbarton Bridge...it took almost an hour to go 20 miles.
When we found our way to the Pediatric Intensive Care Unit (PICU), Scarlett was already laid out on the bed. A huge team of doctors, nurses and EMTs were fussing over her, with both awe and shock over her tiny size. Details begin to blur as we learn she will have an MRI in a few hours...a tour through the unit - our room, the desk, our nurses, the family waiting room (with one shared bathroom for all the panic stricken families of PICU kids)...I cannot feed her, but here is the pump to save milk...we will be in the PICU for a while...a quick sit-down with the pediatric neurosugery resident to tell us there was a large mass, the CT scan of which he showed us on his iPhone; "impressive," he kept calling the mass...she will be intubated and paralyzed for the MRI, so kiss her now...and there is a social worker waiting to speak with you.
As the social worker interviewed us, asking how we handled when we were feeling angry, how we handled when Scarlett was fussy, did we have any support, we sat in stunned silence as he tried to determine what kind of horrible people we might be. As we explained our home situation, our jobs, education, health and whatever else he asked, I could not help but wonder how we got here, telling this stranger that no, we did not shake our baby when she cried;yes, we understand it is unsafe to leave the baby with the dog unsupervised; no, we are not drug users, nor do we smoke or have guns; yes, the doctor told us it was a mass and no, we didn't think we would be home Tuesday for him to check our home for dog feces.
We had to shake that off fast, because it was time to walk with our child to the MRI. We held hands as we followed the huge metal crib with our baby strapped down on top through the labryinth of Stanford's underground level.
It took nearly three hours before she returned. They took out the breathing tubes and said we should rest, but not to feed Scarlett in case the MRI showed an immediate need for surgery, as anethesia might make her vomit. So we embarked on a long night of attempting to rest in a noisy, freezing ICU room, still wearing our windbreakers and tennis shoes, with a screaming, hungry, sore baby. We did not rest.
The next morning, we waited to meet with the neurosurgeon. We were assured by every nurse and doctor we saw that this was the guy to talk to...best in the country, if not the world; we're so lucky to have him. Lucky? I don't think so.
As I walked to the bathroom, I passed our nurse during the shift change; she was showing Scarlett's MRI images to the new nurse. I stopped to see the white egg-shaped mass in my daughter's brain.
When the doctor arrived, he began talking and showed us the detailed images of our baby's brain. While he couldn't give us much detail yet, what he could say was that our perfect, beautiful, seemingly-healthy baby was harboring a 10cmx7cm tumor in her brain. It has smashed her tiny brain to the right, and will continue to grow and smash.