Callie's Story, pt. 2...

Today marks one month since Callie passed away.  Here is part two of her story:

I wasn't alone for long.  Before John left the hospital, he called my friend, Lindsey, and asked her to come to be with me.  He didn't tell her much about what had happened, but it was enough that she knew how serious things were.  So without saying another word, Lindsey rushed to be by my side in the very early hours of the morning.  When she entered the room, we both started crying as she crawled into my hospital bed to lay next to me.  She held me tight as I tried to explain everything that had taken place... which was difficult to do because I was so drugged up with pain meds that I felt like everything was a whirlwind.

I can remember that sometime before Lindsey arrived that I had demanded to see the pediatrician who was on call.  I needed to understand.  He had tried to explain to me what was happening to Callie in the NICU but I was in no shape to really comprehend what was going on then.  So when he visited my room, I grilled him again.  I can foggily remember him telling me that Callie had three separate and very serious issues.  The doctor told me that the first, and most dangerous, issue was that Callie's heart was enlarged and that it seemed like some of her valves were not working properly.  Due to the large nature of her heart, it appeared that her lungs were smaller than they should have been.  The second issue was that it appeared from an X-ray that Callie's diaphram may have had a hole in it that allowed her organs to move into her chest cavity.  The doctors at Children's later told us that this was not, in fact, the case... I'm not exactly sure how you can get confused on this, but anyhow, he was mistaken.  Lastly, the doctor said that Callie's limbs and skeletal structure showed signs of a genetic disorder.  He described her fingers as having "arachnodactyly", which basically means that they were very long and slender.  Also, according to his analysis of her X-rays, it seemed as though Callie may have had scoliosis which explains why her hips were tilted.  It was then that I first heard the words "Marfan syndrome" as a possible diagnosis for our baby girl.  The doctor seemed unsure, however, because typically people with Marfan syndrome are not born with such severe presentations as Callie.  Because I was so exhausted, that is the best that I can recall his explanation.  I have no idea when I first realized that Callie had been without oxygen for 15 minutes.  It could have been during this could have been later.  It is crazy how blurry everything becomes when you have been up for over 24 hours and are taking narcotics for pain.

All of this was so very hard to digest.  How could we have not known that all of this was happening?  I had wished so badly during the pregnancy that I could have had X-ray vision to know what was going on in there... and then after the fact, I wished it even more.  Lindsey was there as my ob/gyn came to check on me... and later as another two of the doctors from the practice dropped in.  They all apologized and said that sometimes you just can't catch these things.  To me, that sounded ridiculous.  How could you not see her feet and hands?  Her heart??  5 ULTRASOUNDS!!!  But later, I found out that it wasn't their fault...  as badly as I wanted someone to blame, it wasn't their fault.  And blaming others didn't fix anything or make it better...

It wasn't long into that Friday morning that I met an angel here on earth named Nurse Cindy.  Cindy had a demeanor that instantly soothed me.  She explained that she was a nurse like the others on the maternity wing, but that her specialty and passion was palliative care.  Of course, I had no idea what the heck that meant...  and then I learned.  Palliative care is to help patients become more comfortable and reduce suffering...  like hospice.  They had called Cindy in, despite the fact that Callie was at Children's, because she had seen countless scenarios like mine before, where babies had been born with conditions that would not allow them to live for very long.  When I learned what palliative care was, I burst out in tears knowing that my baby's life was so in question.  No one had really told me how bad it was...  I mean they had, but not like that.  I still had this glimmer of hope that she would pull through, despite all of her troubles.  And now, I knew... and Cindy encouraged me to hear it, accept it, and move past it so that I could be there in Callie's last moments.  Nurse Cindy was there by my side as my advocate.  And by advocate, I mean warrior, go-into-battle, kick-ass advocate.  Cindy told me that her number one goal was to get me transfered to a neighboring hospital to Children's so that I could be with my baby.  I would have to take out the epidural early and go a little easier on the pain meds, "but you're a mom now.  And moms do what they have to do for their babies."  That's what Nurse Cindy said.  I had been told earlier by the doctors that it wasn't possible and had accepted my fate...  I had to follow the rules and wait at least 48 hours to be discharged.  I am so lucky I had Cindy because Callie only lived for 35 hours.  Looking back now, I simply cannot imagine not being there with her and I will forever be indebted to Cindy for allowing me to have those special moments with Callie. 

And so we waited... and waited... and waited.  While Cindy spent countless hours on the phone with hospitals and insurance, Lindsey and I talked and my pastor visited.  My dad and brother came.  And more time passed with little word on how Callie was doing.  Meanwhile, John and my mother were at Children's Hospital.  Our little 6 lb. 10.7oz girl had teams of doctors working on her...  teams.  In and out, they rushed out of her room, examining her, reporting to each other, and reporting to John.  He said it was enough to make his head spin.  Each team of doctors had a different focus.  There were peditricians, cardiologists, pulminologists, neurologists, and genetic counselors.  And tons and tons of wonderful nurses.  Callie was moved three times in those first few hours and eventually settled on the CICU-  Cardiac Intensive Care Unit.  Her prognosis was not good, and all of the doctors had different ideas about what was wrong and how to go about fixing Callie...all the while, fighting to keep her stable.  I can remember talking to John on the phone and him sharing feelings of confusion and worry.  He was so brave to have to face all of those doctors and early decisions all by himself.  He is the best dad in the world.

Finally, thanks to Cindy's relentless efforts, I got the word that I would be transferred and that a medical transport team was being sent to pick me up.  Now, up until now there has really been nothing humorous about what happened to us, but allow me to lighten the mood.  This transport team was a little "rough around the edges" (that is PC for ghetto).  As we sped away from the hospital, I literally thought that this chick thought she was a NASCAR driver.  Ambulances are supposed to be fast, but not wreckless.  We whizzed through red lights and stop signs without lights on or a siren.  Lindsey, trying to throw in a really subtle hint, asked the driver if she needed a special license to drive a medical transport.  She obviously didn't pick up on this and said "Na, you just have to have a regular driver's license."  AWESOME.  She also told us she needed special "authorization" to use the siren.  What??  Lindsey "authorized" her (when you need something done, ask Lindsey) and the sirens came on for the rest of the trip.  Every bump in the road made me cry out in pain, but at least we made it to DC in record time.

Gratefully, the transport took me to Children's Hospital first.  When I was wheeled into the CICU (still in my stretcher), I found all of our close friends and family there in the waiting room.  I was immediately overwhelmed with gratitude and the knowledge that we have the very best support system in the whole wide world.  I cannot tell you how comforting it is that they dropped everything to be there for us in our moment of need.  Then, I was escorted to Callie's room.  John was there and I have never been more thankful to see him in all my life.  Callie looked better than when I had seen her last.  Her skin was pink and, although she was hooked up to even more machines, I thought she was beautiful.  The doctors filled me in on how Callie was doing and I can remember actually having to fight back the feeling of falling asleep as they were talking.  It had now been 36 hours since I had last slept and as I reached from my stretcher to hold Callie's hand, I could not stay awake any longer.  The medical transport team took me away to the neighboring hospital so that I could be admitted and checked up on by the doctors and nurses there.  This meant leaving John behind so that he could stay by Callie's side once again.

The difference between the DC hospital and the county hospital I had been in previously was like night and day.  I had the overwhelming feeling like I was being wheeled into a jail cell.  The room was tiny and old.  And although the nurses were sensitive to what had happened to me, no one else really was...  like the food service lady who flung open the door without knocking, shoved food in my face, said, "Dinner", and slammed the door on her way out.  After resting, my friends came in to check on me.  We talked about Callie and her prognosis, we cried.  I truly have the best friends in the world.  Later, I wanted to go see Callie again, but for who knows what reason, they wouldn't allow my friends to go with me in the tunnel that connected the two hospitals...  there may have even been certain hours that even I couldn't have gone through as a patient...  I can't remember... but what I do know is that they certainly weren't willing to bend any rules, even for the mother of a dying baby.  Not cool, really not cool.

So, naturally...  my friends busted me out of that place!  They pushed me in a wheelchair down long halls and out the back door of the hospital, across a parking lot, and into the back door of Children's hospital.  The whole way there they joked about how it felt like a jailbreak and I had to beg them to stop making me laugh so hard because it hurt my incision.  I love that they could make me laugh even during the worst of times.  I'm so glad that I got that time to be with John and Callie that night.  I showered Callie in kisses and held her tiny little hands. 
Finally, after much time had passed, the doctors and nurses encouraged us to go back to my hospital room/jail cell to get some rest.  It killed us to leave Callie, but neither one of us could keep our eyes open any longer.  My Aunt Cindy, volunteered to sleep in Callie's room with her so that she would not be alone... yet another act of selflessness that greatly touched us during this time. 
Callie in the CICU at Children's

Throughout the day, John and I had talked about the decisions that lay ahead of us for Callie.  She was on life-support, but the doctors encouraged us to give them more time before making any decisions.  They had all sorts of operations and procedures that they told us would help her heart.  As her doctors, they were all doing everything in their power to save her life.  That's what doctors do.  But as her parents, we wanted what was best for Callie.  The neurologists were collecting data from an EEG (which is what was under her little white 'gnome'-looking hat) to see how Callie's brain was functioning and would need until the morning to know more, so as we went to leave her, I begged Callie to send me a sign of what to do.  "Please tell us what to do baby girl." 

John pushed me back across the parking lot to my hospital and after I was examined by the nurse, we cried for a long time.  And we talked and talked and talked and prayed for guidance on what to do.  I am so lucky to have such an incredible man as my husband.  Without him, I could have never made it through all of this.  We gratefully fell asleep quickly due to exhaustion, but sleep did not last long.  At 4:30 in the morning, John's phone rang.  "I'm afraid we may be reaching a crossroads," the doctor said.  Callie had answered me and God had answered my prayers.  She was letting us know what we needed to do for her.