Sweet Dreams Ellie

At 9:55 a.m. this morning Ellie moved on to another place. She died in peace, which is all we could hope for. I hope Ellie was as much of an inspiration to you as she was to our family. Thank you for all your thoughts and prayers.

...and don't forget the mail

After wrapping up an evening of gymnastics and Tae Kwon Do, I realized I hadn't checked our mailbox in days. It was completely stuffed with mail, magazines, and neighborhood flyers. In retrospect checking the mail was the least of my concerns over the past week because since Monday night Eleanora has been fighting for her life.

At 2:30 a.m. Tuesday morning Greg woke me. He couldn't console her. She'd been crying since 10:30 p.m. Ellie was not just crying, but screaming. I stayed up with her through the night trying to help her through her "discomfort" that I thought, at the time, was related to a new formula she had begun a few days earlier. By Tuesday night she was vomiting Pedialyte through her nose and mouth, mucus oozed continuously from her nose (at such amounts I had to reapply tape for her feeding tube four times--her skin was raw and bleeding), she screamed continuously, tried to rip out her feeding tube, never rested more than 20 minutes at any given time, moved violently from belly cramping, and so on. This lasted for days. So much so that she lost her voice.

By Wednesday afternoon our home had become a war zone of diapers, kleenex, pedialyte solutions, dishes, half-eaten pieces of toast, etc. In short, it was a disaster. Our hospice volunteer, Ann, recognized our need for help and took Charlotte and Addie to the park and to dinner (feeding them, packing their lunches, reading to them, doing homework, etc had become a Herculean task--embarrassing as it may be). (I think I even forgot to feed Theodore once or twice). Wednesday night she began to feel better by sleeping from 10 p.m. to 3 a.m. This was the longest she had slept in days.

By Thursday my mother came to stay with us. She helped around the house and cared for Ellie through the night so we could sleep. I had had very little sleep since Monday--although it was physically taxing, the emotional toll was more exhausting.

By this morning, Ellie slept--for hours and hours. I'm still very concerned for her well-being though. She has developed a wheezy cough that could progress into pneumonia. I fear that is something her little body could not overcome. But for now, this little piglet has escaped again.

This is what it means to be immune-compromised. I didn't fully appreciate its severity before. We believe she contracted this bug from a few sniffles that the girls developed on Monday. Let me stress...SNIFFLES...no one, except for Eleanora, was remotely bothered by this virus. As difficult as it may be, we are considering not allowing anyone into our home for the next few months.

Staying healthy through the winter could be an insurmountable task, but only time will tell.

Piglet's Escape

Even as a newborn--3.6 lbs--Ellie always found a way to sneak her piggies (aka toes and feet) out of her blankets, socks, booties, and the like. Today is no different, she still manages the sneakiest escapes.

This afternoon Ellie began to drastically change color. First her hands and feet turned dark purple...the violet haze slowly crept up her arms and legs until her entire body had changed color. I sat on the kitchen floor and watched helplessly. Crying. Had death arrived?

As time elapsed her violet skin tone changed to ashen grey. Her hands and feet were cold.

I could barely breathe. Please not today. I'm not ready.

Yet, just as before Ellie persevered and overcame the odds. The doctors suspect that her brain stem was malfunctioning. Similar discolorations may take place over and over again. There is no way to know which event, if any, will be fatal.

For now, I'll hope and pray that this little piglet continues to escape--kitchen floor moments and all.