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.
We arrived home with Zoey in mid May and once again we began a 'new normal'. Only this, looked nothing like normal. Zoey was g-tube fed 22 hours a day. She had a full size crib upstairs and downstairs. Oxygen, feeding pumps and pulse-ox machines. Meds schedules that required a spreadsheet. Zoey could not be left for a minute without someone by her side. She gagged and retched all. day. long. Her heart so weak, digesting her feeds was too much work. She never cried. And that is not a lie. She never, ever cried. For the first 6 months of her life, I never heard my baby make a sound. Her body knowing instinctively that to cry would deplete her of her already low reserve of energy. Zoey never smiled. Her eyes were dull and without light. They had no color. And speaking of color, Zoey went from a yellow hue in her early days from an overworked liver because of the TMD, to a shade of gray. Just gray. It would not be until her heart was fixed that we would realize just how sick she really was. And it was a good thing. We operated by rote. We did things day to day in a very organized, routine manner, all the while keeping our eye on the prize. Keep this child alive to get to heart surgery. Nothing else mattered.
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.
So we basked in our 'new, new normal'. Watched her smile and master rolling and begin to sit for seconds alone, unassisted. She ate food and giggled and did, well, she miraculously began to do what other 7 and 8 month old babies do. Despite Down syndrome and a stroke. Despite laying flat on her back, for the first months of her life. Utterly and completely, amazing.We were unfazed by the prospect of therapy to rehabilitate her weaker left side. We were unfazed by the obstacles and limitations that might come with raising a child with Down syndrome. We were just feeling so blessed to be standing in a place of healing and hope. We truly believed that the worst was behind us, behind her. We could never have been so wrong in our lives. Soon we would add to the plethora of new medical jargon that had become second nature to us. Shortly we would become cruelly and unmercifully schooled in a much unwelcome new diagnosis of Infantile Spasms.
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.