Helping Others

Many folks have asked what they can do for us during this difficult time. We'd ask folks to consider making a small donation, in Ellie's name, to one of our favorite charities. No donation is too small (I mean this sincerely). The organization we'd suggest is wholly run by volunteers.

Support Organization For Trisomies 18, 13, and Trisomy Related Disorders (also known as SOFT; it is a 501(c) 3) is a network of families and professionals dedicated to providing support and understanding to families regarding the issues related to the diagnosis and care of children with rare trisomies and related chromosomal disorders. Support is provided from prenatal diagnosis, during the child's life, and after the child passes. SOFT respects each family's personal decisions and does not place judgement about a family based on the difficult decisions that will be made during this time.

In addition, over the years SOFT has consolidated medical information on hundreds of children with rare chromosomal disorders. I cannot begin to tell you how very important this is to fellow parents. Our children face a mountain of diagnoses--beginning at birth--and doctors do not know how to proceed. Most physicians have seen one or two children in their lifetime with a rare disorder and are baffled at how to treat them because of the complex nature of their illnesses. It is not uncommon for these children to suffer from cancer, heart failure, ASD or VSD (holes between various heart chambers), seizures, severe reflux, obstructions in digestive pathway, spinal complications, brain anomalies, to name a few.

Any of these are serious, but in combination physicians are often at a loss on how to help. Some even suggest to give up on helping your child because they will die soon anyhow. Ellie suffered from the aforementioned medical conditions, but we never (not even once conceived of) giving up on Ellie's happiness and quality if life (and I had no problem telling any physician who even suggested giving up on her where to stick it).

SOFT's donation website

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.

"Conditions Not Compatible With Life"

When facing the prospect of having a child with significant medical challenges and more so one who will likely die, physicians inform patients that their child may have "conditions not compatible with life." This is the go-to phrase of medical community. Any parent who's been in our position can relate.

I distinctly recall when I first heard this term. It was unsettling, but I didn't break down in tears (that was for after the appointment). It was during my 20th week that we realized the baby's heart was not normal (at the time her heart was smaller than a dime, but advances in fetal cardiology have enabled doctors to see the valves, chambers, etc). I was devastated, but hopeful.

As time elapsed I became aware of more and more abnormalities with the pregnancy. Both Ellie and I were affected. I was also receiving information from an array of doctors--none of which I clearly understood. So, I ordered the obstetrics book used in medical schools and read it over and over again until I was fluent and understood the science, methodologies, possible diagnoses, and treatments. I searched and read as many articles as I could find on PubMed (the research database of medical literature). Nothing I could find was positive or offered a glimmer of hope, but I took charge of our medical care and made decisions that I felt were in our best interest. I had hope.

Under all this pressure I refused genetic testing. I wanted to know if something was wrong, but in reality nothing would change. What was the utility of knowing? It wouldn't change anything. I could find out that she only had a heart defect or I could find out that she had a "condition not compatible with life." Relief or distress. These were my options.

In retrospect, I regret nothing. In fact, I'm glad I didn't have an amnio. Had I discovered Ellie I was not healthy, I would have been devastated. My physician team really wanted me to have an amnio so they could be prepared for delivery and we could determine if we should "save my uterus." "Conditions not compatible with life" often mean that the mother undergoes a emergent c-section because the child is unlikely to survive (I will never be able to deliver a child naturally again). From a medical standpoint, why put the mother through a surgery if the child is likely to die anyhow?

Although the past few months have been heart-wrenching, full of peaks and valleys...I would have never changed a thing--our decision to have a child, carrying Ellie, refusing genetic testing, irreversibly harming my uterus, going without sleep for months, quitting my job...nothing. Looking at her on a daily basis, watching her grow, how could I have made any other choice?

Hey Hot Stuff!!! Nice DNA.

Immediately after Ellie was born, Greg and I thought about the many ways we could keep Ellie with us even after she passed. We have taken 1000s of photos (both professional and our own), have keepsake boxes (one for each of the girls and myself), saved some of her outfits and blankets among other things.

To add to this Greg thought we should have a DNA portrait made for her (it's a completed by a method called gel electrophoresis for you nerdy folks out there--it's commonly used in crime dramas to identify criminals). A Canadian company, DNA 11, offers this service. And so I ordered the kit.

All I needed to do was collect some of Ellie's DNA from her cheeks (the swab was WAY too big for her, but I cut it down to size and was able to get enough cells for the portrait). And viola. I dropped it into the mail and three months later her canvas arrived.

We love it. We chose bright colors that emulate sunlight. Throughout the pregnancy and still I sing to her "You are my sunshine." It was only after she arrived I realized how true and painful this children's song is for me, particularly the second verse:

"You are my sunshine

my only sunshine

you make me happy

when skies are grey

you'll never know dear

how much I love you

please don't take my sunshine away."

"The other night dear

while I lay sleeping

I dreamed I held you in my arms

when I awoke dear

I was mistaken

so I hung my head and cried."

GO ELLIE!!!!

A few nights ago while Greg and I were chatting Ellie suddenly lifted her head. I was so excited that I leapt out of my chair and began cheering/screaming. Greg joined in. Every time she picked up her head we cheered (very loudly). She was definitely intrigued and engaged by our game. How 'super awesome' (a Charlotte quote) is this??

In the past few months I've prioritized my hopes...I hope to see her smile...I hope to hear her giggle...I hope to receive a kiss on the cheek. To be honest, I never thought she'd begin meeting developmental milestones like picking up her head. Maybe, just maybe, I'll be able to make her laugh. This would be so profound and meaningful for me---for all of us.

Despite everything, at least I still have hope. Go Ellie!!!