What would you do?

What would you do if you lost a child?  Would you bury them?  Would you cremate them?  Honestly, you can't truly answer this unless it happens to you (and I hope it never does).  During the pregnancy and thereafter, I thought I knew all those answers.  I was surprised, however, with just how naive I was.    What if the baby stopped breathing during delivery?  Would you resuscitate?  What if you resuscitated and only later had to 'pull the plug' on the ventilator?  Would you do everything that your physicians suggested?  Would you host a memorial?

I faced these types of questions throughout ellie's life.  Should I enroll her in Medicaid?  It took three months so why bother, they said.  She'd probably die anyhow.  Should I vaccinate her?  Why bother?  She was likely to die any day anyhow.  (I decided to give her immunizations on a slower schedule...mostly because I still had hope.  Hope for a future no matter what it looked like).

I decided against heart surgery; although the surgeons were split 50/50 over whether operating on her heart would improve her prospect for life.  I too wanted her to live, but heart surgery was an enormous undertaking and would likely cost her her life or sentence her to a life in the hospital.

Our insurance company assigned a nurse to our family.  The nurse was to "check-in" and see how things were going.  By the fourth month of life, the nurse--with her southern accent and habit of calling me "dear"--called to ask if I thought the baby would die soon (how is her color?  how is her breathing?  how much longer do you think she'll live?  I hated her.)  She told me that she had to fill out more paperwork based on just how long ellie would live.  Should she fill out the longer-term paperwork or shorter-term?  (After ellie died she never called again, even to say "I'm so sorry, dear").

Hospice left me with a matrix of funeral homes I could call to find out how much it cost to bury or cremate a child.  They didn't have pricing for children (it would be my job to figure this out).  Some funeral homes said "well, if you bring your child here I'm sure we can make you a deal."   While others had a fee schedule based on how long she lived.  The longer she lived, the more it would cost.

Day and night, night and day I spent with her unconditionally and often beyond exhaustion.  Within the first month of her life, I was significantly losing my eyesight, in both eyes, from lack of sleep (nearly 75 percent in one eye alone).  After the feeding pump arrived though, we could sleep better throughout the night and my vision returned three months into her life.  By the last week of her life, however, I was having audio-hallucinations of her crying.  She cried and cried all the time.  I could no longer sleep.  Her cries became the white noise of my life.  I'd awaken in the middle of the night, run to the top of the stairs and pause.  I'd hear her crying, but was she REALLY crying?  Often, not.

I was losing my mind and I knew it.   And, it was likely going to get worse.  Greg and the girls were contemplating moving out since she was so severely immuno-compromised.  Winter was coming and the girls would inevitably carry home a small virus that would take ellie's life.

Just as quickly as we were making these decisions, ellie passed away quietly and unexpectedly.  After she died I could not stand the thought of being without her.  She had been in my life for more than a year (remember she was in my belly too).  From the weekly celebrations we had during the pregnancy to the weekly birthday parties we had during her life, I still needed to have her next to me.

With that Greg hired an artist the in northwest, Eli, of Rogue Art Glass (http://www.artglassmemorials.com/).  Eli knew that I wanted an urn that included ellie's endless blue eyes and created a masterpiece (we sent photos of her eyes).  He worked and worked to create a timeless artifact.  In fact, he created three urns for ellie.  He wanted it to be perfect.  After weeks in development, he sent his favorite as her lasting burial ground.

ellie is fully embodied in a small sphere and held by deep blue hands.  The hands are surrounded by a clear egg.  I think it's perfect.  There are few people who I owe such a great debt of gratitude, but Eli is near the top of the list.

I Miss Her

Nothing could have prepared me for the journey we've been on this year. No one could have shared with me just how hard life would be with ellie or without. Everyone in our household put their lives on hold. There was little time for sleep, for patience, and practically no time for each other. The stress was mounting during the last few weeks of her life--I wasn't sure how much longer our family could endure. And truth be told, ellie was not feeling well. Keeping her happy had become a herculean challenge. She cried around the clock, literally.

Now, it's been more than a month since she has died and the pain is ever present--as I go grocery shopping, get a haircut, or sit in yoga class. Getting though each day is tiresome and nights are filled with nightmares and insomnia. By dinnertime I'm usually overwhelmed from interacting with people all day--and I either end up crying at the table or snapping at the girls. To make matters worse, the girls are either wiping my tears away or telling me "it's okay you snapped at me mom; I know it's because you miss ellie." At night, while everyone is sleeping, I go through pictures, listen to her voice recordings, and watch videos to reflect on everything that has happened.

I have no regrets. I feel that I made the right decisions for her and on her behalf. Being ellie's mother was one of the most humbling experiences of my life. I miss her dearly--the emptiness floods me. I miss her cries. I miss her happiness. Yet, I am thankful. I got to be her mother and nothing that can replace that.

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?