Happy Heart Day My love.
"Our sweet Zoey remained in the NICU at hotel CHLA for nearly 3 months. Life in that place was the most insane roller coaster ride ever. And I have always hated roller coasters. You would string along these really good days. You would start to get comfy and confident that home was around the corner. You would see light at the end of the tunnel, only to realize that it was a massive train barreling down the tracks, ready to lay you out flat. Nothing gets your heart racing like walking into your child's NICU room first thing in the morning with a spring in your step, all optimistic, only to see doctors, nurses and respiratory therapists hovering over your crashing child. Nothing prepares you for that. Nothing prepares you for being in a NICU room, with 5 other complicated babies and their families, distraught and worried and wondering if any of you will be walking out with a child in tow. And sadly, the truth be told, some of you won't.
At Zoey's 7 week of life mark, we had hit a crossroads. Zoey was in congestive heart failure. She could not manage nasal feedings. She was desating all day long. Which means her oxygen saturation was plummeting due to numerous factors. Most out of our control. Long term alternative nutrition, TPN was not a favorable choice due to her already fragile liver, so we were left with just one option. A g-tube. Now, way back when, in those days, I equated feeding tubes to end of life issues. I thought, I surrender to that, and I am giving up. But surrender we did. Zoey began sporting a G-tube at the tender age of 7 weeks, as well as a fundoplication, which would cinch off her stomach to her esophagus, which in turn would prevent her from aspirating into her lungs and developing pneumonia. That g-tube has remained in place for the last nearly 5 years of her life and that g-tube has not been an indication of a life nearing its end but rather has been a LIFELINE to her fighter body, in the times when she has needed it most.
And finally, the day arrived. August 13th, 2007. I handed my daughter over to the hands of the ones that would make her whole. I was not nervous. I was not scared. I knew that we, as a beautiful family of 8, had done everything possible to get this girl to this day. The moment they walked away, I took a deep breath. Relieved. Relieved to have arrived at this day.
1 hour and 40 minutes. That is all it took. A major heart defect. Fixed. Just like that, by a man and a team that I will forever be indebted to. Dr. Vaughn Starnes, his nickname in L.A., as blasphemous as it sounds, is 'god,' for the works he performs. Just ask Arnold Schwarzenegger. He is sporting a nifty valve placed by none other than Dr. Starnes himself. And perform he did. Perfect fix. No leaks. Nothing. Perfect as it should be. Perfect as I felt she deserved. And then the gifts just kept coming. On the day they extubated her, 4 days after surgery, they took the tube out and out came the tiniest of cries. Raspy and weak, but a cry. And the attending doctor asked me if her cry normally sounded like that, to which I replied, "I would have no idea, In 6 months of life, I have never heard her cry." And on day 5, the biggest gift of all. The moment I had been waiting for. In all the pictures I had studied of other children with Down syndrome, there was one common characteristic that I longed to see and finally, there it was. A smile. Accompanied by the brightest eyes and the pinkest of skin I had ever seen. New life. A rebirth. A second chance at life.
Both of these pictures were taken before we were discharged from the hospital. That smile I had waited for had finally arrived.
I pumped my milk for that first 6 months of Zoey's life. Stocked my freezer. Added it to her feeds. All along thinking that once she was healthy she would be able to nurse. Well, if you could see the faces of OT's, nurses, and doctors as I conveyed to them my hope that she would nurse once she was strong enough. They thought I was in la-la land. And so be it. I knew differently however. I knew in my heart that this child was capable of far more than anyone thought she was. So on the Monday after her heart surgery, as I sat in the car waiting for Mark to check us out of the Ronald McDonald house, Zoey started fussing. I knew she was hungry. So I thought, what the heck, now is as good a time as any. So I lifted her out of her car seat and nursed her. My newly cut open, never had a thing to her lips ever, low muscle tone child with Down syndrome, nursed and continued to do so for another year. A lesson to us all to never, not ever, underestimate the power within these fighter children of ours.
It would not be just a storm that would be coming our way. It would be a violent rampage on our already beaten down girl and it would prove merciless and unrelenting and would take this mother from a place of gratitude and thanks to a place laden with doubt in everything. Including Zoey."