This is HOPE.

Today is the Day…September 18, 2019

Seven months ago, on a cold Friday in February, we took our four month old daughter to see the developmental specialist team at UVA. Her head was growing quickly, she was gaining weight slowly, and our regular pediatrician recommended seeing the specialist team to rule out anything serious.  That’s why we went there, to rule out anything serious.  They took an ultrasound of her brain, through her little baby soft spot on the top of her head. This was a preliminary measure as the least invasive way to decide if further testing was needed.  I remember holding her as they did the ultrasound, feeling carefree, thinking, Well, at least this will rule out anything scary.  I didn’t even know what scary could be.

The doctor we had seen on Friday called us on Saturday morning.  That old adage about doctors only calling on the weekends with bad news made my heart sink when I saw the number on my phone.  We sat down together, my husband and I, we put the phone on speaker, watched icicles drip off our roof through the window.  We cried.  She told us they saw fluid on her brain, that further testing was needed, that it was indicative of something called hydrocephalus, a word neither of us had ever heard before.  We stayed as calm and collected as a parent can on that kind of phone call.  We asked what this condition could mean for her future.  She told us to come in first thing Monday morning, pack a bag, and prepare to stay at the hospital.  

Seven months ago they told us our child might never walk, never speak, never play.  That last one is what broke my husband.  Through ten years of being together, I have never seen his face crumble, his body shake, the way it did when he thought about our tiny little baby never growing up to play.  

Seven months ago we kept our daughter asleep through a 45 minute MRI, which usually requires sedation.  We sat in the room with her, ear plugs in, the only way I can describe this experience is that we held her and rocked in our hearts and our minds.  We kept our connection with her, that sacred bond between a parent and an infant, and we kept her peaceful and asleep. The staff had never seen a baby go through a 45 minute MRI without sedation.

Seven months ago they gave us the results. They showed us images that shattered my heart, broke me into a million pieces of guilt, fear, anger, sorrow, anguish, desperation.  They talked about brain damage.  They talked about saving her life, for the first time we understood that her life was in danger, that she was hanging on and trying her hardest, but barely making it.

There is no way to describe the surreal experience of staying in the Pediatric Intensive Care Unit, the PICU.  By the end of our journey, the fact is we were luckier than most of the families there.  One nurse told us that about the half the babies and children in the PICU are there long term.  It hurts to walk the halls when the doors to the rooms are slightly ajar, to see tiny bodies hooked up to monitors, to listen to the constant beeps of leads that check heart rate, blood pressure, oxygen levels, and breathing 24/7.  It hurts to hear little cries through the night and to wonder why…did they have to get their blood drawn?  Are they afraid of the nurses?  Did their mom or dad have to leave to go to work just to pay the bills to keep their child as safe as they can possibly be?  It is a surreal existence in the PICU.  We were woken up every hour on the hour for neuro checks, we got used to the 7 am and 7 pm shift change and rounds, which my husband always stepped out to listen in on, as doctors described our daughter’s condition, the tests they had done so far, the next steps.  

And we waited.  Here’s what waiting means…Our tiny little baby wasn’t allowed to nurse for 14 hours straight, because we had to be prepared at a moment’s notice to operate.  She was on fluids through a tiny little IV, which made my heart hurt to look at.  When you’re in the PICU, you aren’t “on the schedule” the way you would be if you had an appointment for an MRI or a surgery, or anything really.  You wait for the MRI machine to be ready.  You wait for the scan to be read. You wait for answers, and sometimes, you don’t get them.  Sometimes you will never know why your child has cysts in her brain, just that she has them. You wait for results.  You wait for the pediatric sedation team to assemble, for the OR to be cleaned and ready, for the brain surgeon to get some sleep so he can be at his best to operate on your baby’s brain. These are the most surreal words:  To operate on your baby’s brain.

Seven months ago, that is what happened.  Our daughter had two brain surgeries over two days.  The first to connect a group of cysts in the center of her brain through something called fenestration…a fancy way to say “poking holes”.  Her surgeon is a literal superhero who flies around the world to third world countries to share his knowledge and his surgical tools, empowering more surgical heroes to do more for the brave warriors that they treat.  His baseline is to be the least invasive he can be while accomplishing the most he can accomplish.  His plan was to get the cysts to communicate as one, then put in a single shunt to drain the pocketed fluid to her digestive system through a permanent catheter. 

Seven months ago, when we asked our daughter’s surgeon about comparable cases, he talked about a toddler who had not developed “normally”, who was not walking or talking at three years old.  Essentially, we were told to prepare ourselves.  Something in me knew this was not going to be her story.  Through all of this, these last seven months, which have included monthly fast scan MRIs (no sedation required), monthly appointments with her neurosurgeon, multiple appointments with the developmental specialist teams, biweekly physical therapy appointments in our home to help her catch up in her gross motor development, and a final brain surgery two weeks ago to address one cyst that was anatomically unreachable during her first surgeries—somewhere in all of that, I held onto my faith.  Faith isn’t the right word actually.  Knowledge is the word.  I just knew.  When people said to prepare for the worst, even when my husband prepared himself, went to a dark place of sad possibilities, reconciled the potential reality of our future…even then I knew.  I claimed a victory. 

And today is the day. Today my fierce, strong, warrior child sat by herself to play.  A baby sitting for the first time is a magical moment for any parent, and I don’t discount that in the least. When doctors tell you to prepare for a child who will never have gross motor control, watching your baby sit up for the first time is something else entirely. It is a magical moment as it is for any parent, and it is hope. It is validation.  It is relief. It is triumph. It is everything. This huge leap in her motor skills is how she shows the world, the doctors, me, her dad, our family…that she is what I always knew she is…going to be just fine.  Not fine, extraordinary.  Against all the odds, and above all the expectations.  Extraordinary, fierce, and victorious.  And just in time for her first birthday.