Sunday, December 19, 2010

Discovery

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.

20 comments:

jennifer said...

what a scary experience to go through. as someone who works as LPCH i kind of lose the ability to see it from the standpoint of the patients and family.. and it's an eye opener for me to read this. i know the hospital can be very stifling and cramped.. but the staff truly is amazing and i hope that any questions or concerns you have get addressed. i look forward to reading about scarlett's progress.

Lorae said...

I just want you to know that I heard of your Story on the October 2010 Birth Group. Your beautiful daughter and your family will be in my prayers. Remember that you have support from more people than you will ever know. Many you will never meet. I am one of those people! I pray that a mirical will happen for her. I will be following you through this trying situation. I can't imagine being in your shoes. I had my daughter on October 7th and I just can't imagine the things you are going through. My heart goes out to you and your family.

Anonymous said...

Brandi, I also heard about your butterfly on the baby board. My heart goes out to you and Chris. I do not know your religious beliefs, but I pray that God gives you and Chris strength and that your beautiful Scarlett makes a full and speedy recovery. Your family will remain in my prayers. God bless you all.

Anonymous said...

As another Oct 2010 Mommy...my heart goes out to you! What a crazy whirlwind....

We too will be praying for a miracle for beautiful Scarlett!!!

Anonymous said...

My thoughts and prayers are with you and your family during this tough time. I have a baby that was diagnosed with glaucoma at 4 months old. After 3 weeks of her refusing to open her eyes, we were told that she would more than likely go blind from this disease. My heart goes out to you and sweet little Scarlett. I will pray for her daily. It is amazing how strong our fragile little babies can be!

moishe kahan said...

ask Jmolson@immunotec.com
they have the best success rate in the world, with cancer & glaucoma

Anonymous said...

Still praying for your beautiful butterfly and asking my family and friends to pray, too. Keep the faith!

The "L" in ELF said...

Found your post via a blog post from another blogger. Sending up prayers now!

tanisha said...

I'm from the October 2010 bbc and just found out about your situation. My prayers go out to your family and baby Scarlett.

Anonymous said...

I'm from the Dec 2010 bbc and I cannot imagine the immense pain your family is going through right now. I pray God gives you strength and hope. I will keep your family in my prayers, praying for baby Scarlett to keep fighting, even though she's so tiny, there's a lot of fight in our precious babies.

Jenn said...

I came across your story through someone else's BBC siggy - I'm a Nov 2007 mommy. I just wanted to let you know I will be praying for you and your family and that your precious little girl will be okay!

aka ladypanther68 on BBC

Anonymous said...

A friend sent me your blog and my heart goes out to you. You will be in my thoughts and prayers. If you have time, please check out journey4acure.org. They are a non-profit dedicated to pediatric cancer.

Anonymous said...

Hi Brandi: I felt like I was reading my own story when I read. The difference was that my son was just over a year old when our nightmare began. They felt that Matthew was probably born with his Brain Tumor and that it was a Tumor that was normally found in old men is what I was told. I always hate to hear stories of another family going through this. I will keep you folks in my thoughts and prayers. Just keep fighting for her. If you ever want to shoot me an e-mail feel free. Kwagner0629@yahoo.com. I will never regret the fight I made for Matthew through The Jimmy Fund. Hugs to you

Anonymous said...

I am SO sorry...my son is 4 days younger than her...absolutely couldn't imagine if he was sick. I am praying for your family and sending hugs to your little girl!!!!!

Anonymous said...

I can't imagine the pain your family is dealing with. Your story really puts the saying "live like there is no tomorrow" into perspective. Not that it is any consolation but God does have a plan and little Scarlett is your little angel. Time together might be short but more real than anything. Enjoy every moment you can with her. God Bless!

Anonymous said...

my heart and prayers go out to you and your beautiful little one

Anonymous said...

A friend shared this blog with me & I am so sorry to hear that you are going through this terrifying experience, but stay strong & positive & you will all three make it through. Miracles are happening right now! My thoughts & prayers are with you!

Anonymous said...

Brandi and Chris,
This time that you have now will be the most trying time you will EVER go through. Take this opportunity to draw closer to GOD. I pray everyday and ache inside for your situtation. I have had a cousin go through the same experience. As Scarlett goes through her surgery today, I pray you find peace and by some MIRACLE, Scarlett will come out of this a normal, beautiful, from now on, healthy baby girl.

Anonymous said...

I do not have kids I am only a teenager......
But after reading this I know there is a reason God gives kids like Scarlett to parents like you and Chris......when God gives a child a beautiful special child like Scarlett he has plans they may not be great at first but he is with you and Chris and Scarlett through this it will all work out!!

My prayers for your family and Scarlett

Yanelis said...

Just saw this via someone's facebook asking for prayers. You and your husband are very strong & of course little Scarlett is as well. I'm sending you lots of hugs from our family and prayers. Remember God will never give you more than what you can handle. He picked YOU and your husband out of all these people in the world to take care of one of his angels. He has a purpose. xox