Janaury 29, 2011
And so it begins; another addition to the blogosphere. My topic isn't unusual. My insight and wit are moderately amusing at best. I will probably make horrific grammatical errors. I will be amazed if anyone reads this beyond my most faithful and loving friends and family. But here I go.
Of course I already have a blog, who doesn't? But that is a private place for family to read updates and see pictures. It's been around since the birth of my son, Sebastian (June 2008). But this blog is something more for me than showing off my adorably intelligent son who will surely be some insanely important man, who will most certainly change the world for the better with his charm and compassion! This is a blog about the inner workings of my semi-stable mind...which I guess sums up all blogs. (Oh, and I like that I am anonymous here!)
I titled this blog, "Secret Badge of Honor". When my daughter died, a story I will get to soon, my father-in-law wrote:
Time heals all wounds, of course, but there are wounds we carry like secret badges of honor, or perhaps they are sacred flames of memory. If we hold them too close, we will burn; too far away, and we feel a chill; hold them at the right distance, though, and we feel the gentle warmth of love and memory.
(Brilliant, isn't he?) This resonates with me. Not only does it speak to the horrors of loosing one's child and the pride and grief that follows, but I think it speaks to one's life journey. Our past defines us. Sometimes we wear our past on our sleeves and at other times we repress or ignore it. Sometimes our past was horrific and unfair. Sometimes we don't realize how good things are going until it is too late. But whatever happened then has made us who we are now; good, bad, indifferent. We have survived the past and there should be pride in that. I think we all walk around with a secret badge of honor.
Eleanor. Beautiful Eleanor. There she is in the picture at 20 weeks. Perfect. We had no idea that she was very sick with an imperfect heart. Ellie, as we lovingly called her, was born via c-section at 30.5 weeks on January 8, 2010. She had a previously undetected congenital heart defect (trunkus arteriosus), VSD (hole in her heart) and hydrops, all of which was compounded by her prematurity (lungs). She fought for 6 days and passed away on January 14, 2010. She was the strongest person we have ever known.
My husband and I had no idea there was a problem with our girl until a non-diagnostic 4D ultrasound tipped my doctor off (there was excessive amniotic fluid and swelling in her abdomen, scalp, and around her heart along with my dramatic weight gain and too large belly). On January 6, we went to a Maternal Fetal Medicine Specialist in the state capital for a more detailed ultrasound. He gave us dire news and sent us to the University hospital for more screening. His diagnosis was confirmed and I was admitted by noon at just 30 weeks and 3 days. Her prognosis included a 20% chance of survival with at least one risky open heart surgery in the immediate future. They started the first of two steroid shots (48 hours) to help Ellie’s underdeveloped lungs that day. After she was born, she was immediately taken to NICU — but Chris and I got to hear her cry out three glorious times. She was put on a respirator and a myriad of medicines accompanied by a spider web of tubing. She was stable for the most part and was urinating, which was helping to get rid of all the excessive swelling in her body. She was responsive to our voices and would hold a finger with her tiny hands. We read, sang, talked and sat with her. She was beautiful.
When I was discharged from the hospital, we moved a few minutes away to the Ronald McDonald House. By day 4, Ellie was deemed stable enough to travel to Washington D.C. to National Children’s Hospital via the University of Alabama, Birmingham’s Critical Care Flight Team. She was to have open heart surgery to repair her defect and would recover there. We believed she would survive the surgery and recover…we had so much hope. The day she was set to travel, we learned her flight would be delayed so the flight team could go to Haiti to assist in the earthquake disaster relief. She was rescheduled to fly out the next evening, January 14, at 7:00 pm. She coded the first time at 3:00 pm that day and again at 7:00 pm. We had only left for a few hours to get our room at the RMDH cleaned to to pack for the flight - I was to fly with her that night and he would follow commercial early the next morning. But I received the call that she wasn't doing well and that her flight was canceled.
We rushed back to the NICU in time to see countless doctors and nurses running tests. They told us she was seizing and that her heart had stopped. She had been given adrenaline to start it again and they had to increase her respirator support. We stayed with her until she was stable and I needed to pump (I was determined to do so and obsessed that she would need it...it was all I could do for her and I refused to fail). When I was done 20 minutes later, my husband convinced me to get a small bite to eat and some caffeine since we knew we weren't leaving her side that evening. We were only gone 40 minutes total. When we got back we sat next to her as all the doctor's had left. We told her we were there and that we loved her. Not more than five minutes later the machines started going off and people came out of nowhere. We stepped back and watched the horror that transpired. The noises. The sounds. The male nurse desperately trying to block our view. The female nurse looking up at the doctor, sadness in her eyes. And finally the doctor turning toward us and slowly approaching. He told us the that they were able to revive her, but that the adrenaline would run out and they wouldn't be able to resuscitate her again. So, we were asked to step to the side so they could wrap her in a blanket so we could finally hold her. (Her little body had endured so much those last few hours.) For one glorious hour, we were able to hold our daughter for the first time.
She passed a little after 8:00 pm; Chris holding her hand and me singing and rocking her. That evening we washed her tiny body and held her again. I don't know how long as everything wa sa blur after that. We had to leave her, which was horrific. We were determined not to leave the city and travel home without her. She was cremated the next day and was finally brought home with us on January 15. Her memorial service was January 23, at a historic mansion. Over 100 family, friends, and coworkers helped us honor her short, but powerful, life. Her ashes were spread in the ocean along with six pink Gerber daisies on her original due date of March 16.
Ellie's heart defect was a fluke. It just happened. It is still hard for me to type that and I am not to the point were I can say it out loud. "It just happened." There was no chromosomal defect. There was no ‘environmental’ issues – internal environment, like gestational diabetes or, for example, taking medications for seizures. Of all heart defects, the kind she had represents 1%. Of that 1%, only 1% are classified as ”isolated cardiac anomolies”. There appears to be no cause for Ellie’s defect but chance. 1% of 1%. So, it just is what it is. A nightmare.
I still have lots of anger 15 months later; anger at the doctor's for saying she was stable to wait one more day; anger at Haiti for taking precedent over my daughter; anger at myself for not spending every second with her when she was here; anger at my body for betraying me; anger at some family members for harsh words; anger at the universe for giving women that are not ready to have children a perfect baby while punishing me. I am also immensely sad. I miss my daughter every day and wish the outcome would have been different. It should have been different.
That is the quick and dirty of what happened. Since then I have gone through the spectrum of emotions and the "stages" of grief. I've been on antidepressants, in grief counseling, attended monthly meetings of The Compassionate Friends, and have been involved in multiple charity events in honor of Eleanor. It's not enough. I just need her. So, in an attempt to further grasp what has happened I write here and send it into cyberspace hoping it will finally make sense. (Just let me be delusional!)