While I was away, we marked a lot of milestones for Charlotte. Her first time home from the hospital was August 26th. It’s been a year since I watch my daughter leave the NICU at Chester County Hospital. The NICU was incredibly hectic that day, and despite spending six months there, we left without much commotion. Our good friend Mr. Bobby was throwing a fit and the entire staff was working on re-intubating him. We felt it was only right that someone else should be getting the attention Charlotte so often stole during her long stay there at Chester County. Walking down the hallway, towards the elevators that had so often been full of balloons and presents for another baby, a celebration to mark the end of some other woman’s pregnancy, was now full of monitors and oxygen and carseats and a whole lot of junk that we had lugged into the NICU over many, many months. A yet, despite the lack of balloons and the plethora of electronic equipment, I would be hardpressed to say that any other family was as overjoyed as we were to bring our child home.
The first few days at home were beautiful and awful. You might remember. Maybe you’ve joined us since then, so let me inform you. The first night, we forgot to hook up Charlotte’s oxygen. Funny enough, she actually needed it. In a panic, we called the NICU and were planning on bringing her back to the ER when we realized that the tubing actually had to be connected to the M tank for the oxygen to do anything. Details, details.
Two days later, Charlotte started getting sick. She just seemed off to me and in my paranoia, I took her into the ER and she got a chest X-ray. Which, of course, looked alright. Two days later, however, she was admitted to CHOP with aspiration pneumonia and some virus which undoubtedly came from her loving and affectionate older brother.
That’s when things started getting dicey. Peter left for San Diego for an away rotation the day Charlotte was admitted. My parents were coming into town to visit Miss Charlotte Amalie at home. So much for that. My paternal grandparents came as well, planning on meeting Charlotte in a less “sterile” environment. Despite their fears of never knowing this great-granddaughter, my grandmother and grandfather came to CHOP to see their little miracle. They weren’t going to let a little hospitalization stop them. We spent Labor Day weekend playing tourists in Philadelphia, and literally as I was hugging them goodbye on that Monday afternoon, I got the phone call. Charlotte had spiked a fever, and her temperature was not under control, despite ice baths and medication. I don’t even remember what I did with Caleb at that point, maybe my mother stayed behind? I don’t know, it’s all a blur.
For the next week, I watched as my child slipped closer and closer to death. There was something ravaging inside her body, destroying her lungs, her heart, her kidneys, and blood test after blood test came back without answers. She maintained temperatures of close to 106 degrees Fahrenheit for nearly seven days. She was receiving the strongest antibiotics, the strongest fever reducers, the strongest antivirals. Nothing was working.
Finally, we were sent to another floor; a floor for chronically ill patients. Sometime in the middle of the night the nurse came in and asked how we were doing. I mentioned that Charlotte just seemed “off” to me, even though it appeared earlier that she was starting to turn the corner, even just a little bit. Charlotte had slept all day, and I couldn’t seem to wake her, even when I was changing a diaper or giving her meds. The nurse calmly started taking vitals, and her serene nature quickly turned panicked. Within moments, the PICU team was rushing to our floor. Charlotte had no discernible pulse, and virtually no blood pressure. Despite her body temperature rising from the fever, her limbs were turning blue. As I exited the room to make space for the PICU team, I heard words I’ll never, ever forget,
“Theady rhythm. No pressures. 3, 2, 1, CLEAR. Again! This baby isn’t waiting for us! 3, 2, 1, CLEAR.”
This happened several times over the next eternity. Ok, maybe a minute. I heard those doctors and nurses who had never even met my child give her everything they possibly had. They were so invested in her survival. So determined to keep her alive. When an aide came over and walked me to the family lounge I didn’t argue. I gave up. I had sat by her bed so many, many times, and I knew I couldn’t sit by it alone as she died. I didn’t have it in me to say goodbye to her all alone, in that dark room we had only come to stay in hours before. Not like this. This isn’t how it was supposed to happen.
I thought about calling Peter. How would I tell him I had failed? I had failed to keep our daughter alive. How would I tell him he could never hold her, never rock her to sleep again? How would he forgive me for allowing her to slip away when he was unable to tell her one last time that he loved her?
I couldn’t even bring myself to write about any of it on the blog. Even now, I sit in Starbucks, crying as the customers around me avoid looking at me. I couldn’t share my darkest moments, my greatest fears. My moment of complete and absolute destruction.
I don’t remember walking to the lounge, only that suddenly I was there, sitting in my pajamas at three AM, wondering who I needed to call first. I’m not sure how long I sat there, somewhere around 20 minutes. When the PICU nurse came in, I barely heard her speaking, until I noticed she was telling me that they were transferring Charlotte Amalie to the PICU and I could see her there. Somehow, in the back of my mind I realized that they wouldn’t transfer a child who had already died.
I rushed to the PICU, several floors away, and saw a baby so close to death it took my breath away. She had an IV in her leg bone, since her veins didn’t have enough blood pressure in them to get an IV in. She was back on the ventilator and her chest was bright red, while her hands remained blue. She didn’t look real. But there she was, alive. Alive as you can be when you’ve come that close to death.
The next day was a long one. The doctors told me we had about 12 hours left with Charlotte before they would recommend removing care. Charlotte continued to code, even while on the ventilator. Three more episodes she went through in a matter of hours. Her chest was raw. I asked when I should call Peter, when should I tell him to come home, and they told me to let him be until we came to the point of deciding to remove assistance. No need in worrying him until we absolutely had to. I was pretty sure we had arrived at that moment, but the doctors knew better. I didn’t know how to tell anyone– those words just wouldn’t come to me, so I sat in her room for hours. Telling her all about her family, the people who loved her, the amazing influence she had been on all of us. I sang her the songs my mother sang to me. I told her that Prom wasn’t much fun anyway, so she didn’t need to worry about missing out on it. My heart broke as the minutes ticked away.
And then, miracle upon miracle occurred. The med student ran in about 11 hours into our deadline. A culture had grown something. Tears welled up in his eyes as he told me. They had identified the bacteria and were setting up her medicine. The attending came in and hugged me. She couldn’t make me any promises, but her experience told her, Charlotte would live. The resident came in and sat by my side over the next three hours. After watching Peter’s residency schedule, I don’t know how she had time to do it, but she did. She cried and I cried as we watched Charlotte’s vital signs improve, literally right before our eyes. Her shift ended, and she stayed. She stayed the entire night with me, telling me stories of residency and medical school and her own family.
She came back the next day so she could be there while they extubated Charlotte. A few days later, when Miss CA was finally stable enough to move, she came in and held my baby. This resident whispered to my little girl that she would forever remember her, forever remember to never count a baby out. To never, ever give up on a family. To never, ever forget that each child is loved and needs love.
Days later, as soon as Charlotte was stable, they pushed to do her nissen and g-tube surgery. To risk another aspiration pneumonia was clearly not an option. And so, only days after our daughter died and was brought back to life, she underwent surgery. September 15, 2010. A mere nine days from the phone call I got while saying goodbye to my family in a hotel parking lot.
A year later, this is the first time I’ve been able to sit down and tell the whole story. The fear of that week still lives with me; still paralyzes me every time I find Charlotte’s hand is cold, or she starts to run a fever. I still brace myself each morning that she may not have survived the night. I’m not sure it will ever go away.
And yet, we are the lucky ones. Too many families never get that 11th hour miracle. Too many families have to make those phone calls. They have to find the words I’ve still not found.
Hug your babies. Hold them tight. Sing to them the songs your mother sang. It all happens so quickly. And those moments that happen the fastest, will linger with you the longest. Make those moments worthy of lasting a lifetime.
Because a lifetime is undefined.