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?

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!!!

Roadtrip!

After driving nine hours we arrived at a beautiful house in the outskirts of Boone, North Carolina. We spent a week with extended family. This was exciting for us because we weren't sure that extended family would have an opportunity to meet Ellie.

During our week, we celebrated many events, including my grandparents 80th birthday. We also celebrated my one year anniversary with Ellie. (In the words of one family dinner...Joyal, what were you doing a year ago, huh?? Nice.)

Anyhow. Ellie got lots of snuggles and had a great time. To be honest, I would have been hesitant to take her to the mountains had I considered the attitude difference. Ellie has several heart issues that could have put her a grave risk for heart failure. She has one large hole in the lower two chambers of her heart, several small holes in the top two chambers, and one valve that doesn't fully open and and close. There's some speculation that the large hole and the 'sticky' valve may be offsetting each other. No one can say for sure.

Nonetheless, she proved me wrong (shocking). She tolerated the attitude just fine.

Although driving with three children, a golden retriever, and a husband was super stressful, it was well worth it.

"She's Hardy"

In late August we had an appointment with a nationally renowned geneticist, Dr. Kenneth Rosenbaum, from Children's National Medical Center in Washington, DC. We were eager to see him since he has decades of experience treating children with rare conditions. Most of our doctors Eleanora is the first or second child they've seen with her particular condition--Dr. Rosenbaum has seen more than 400).

Our visit was the most positive we've had since the 20th week of pregnancy. Many of the children Dr. Rosenbaum have seen have been blind and/or deaf (Eleanora is neither), many are not able to use their hands (Eleanora is dexterous), many never respond to stimulation (Eleanora has many opinions and shares them freely), and of course many do not continue to live. From his recollection, Dr. Rosenbaum has had five children live longer lives than expected--three lived until 2-4 years old, two children lived until their teenage years.

Although Eleanora has clear advantages over many of her peers, her prognosis continues to remain the same--on hospice care. But! This appointment shifted our frame of mind--from waiting for her death to living in the moment. It gave us hope. This is something we haven't had for months.

I heart Dr. Rosenbaum!

PS--Mike V. this post is for you!

A Good Week...Almost

We started last week with a doctor's appointment that changed our lives, literally. The entire family, all five of us, piled into the car and went to Georgetown University Hospital's Pediatric Apnea Center. The Apnea Center was able to help us with Eleanora's nutrition and growth.

Eleanora is 'growth restricted' and needs more calories, but she doesn't have the space in her stomach to accommodate it. The Apnea Center was able to help us by increasing the concentration of calories in each of her feedings. Additionally, Eleanora now receives 'continuous feeds' throughout the night--meaning she receives her milk via a pump that continuously runs for 12 hours. Essentially she never becomes hungry or full, but rather feels content throughout the night. This results in SLEEP (for everyone)!!

Greg and I are now getting sleep in more than 1.5 to 2 hour increments. We had been functioning on so little sleep for so long that we were both becoming unrecognizable. Both of my eyes were swollen and inflamed--so inflamed that my vision was becoming impaired. I was losing my voice as well. The physical and emotional toll have been draining on us. Eleanora's physicians were also concerned for our well-being.

Because Eleanora has been receiving more and more calories she has gained more weight. Now Eleanora weighs 6 lbs 1 oz. Hooray! We have moved out of preemie diapers and into newborn diapers. This is a big success for us.

However. By Thursday morning Eleanora's apnea spells were increasing--both in frequency and length. The spells were predominantly taking place mid-morning...and so mid-morning became bath hour. I was desperate to keep her simulated. Ultimately it won't change her likelihood for survival, but perhaps delay her passing.

Seriously...

What's worse than finding a worm in your apple?

Finding half a worm.

This is literally how I began the morning. Eleanora is predominantly given my milk, however, because of feeding difficulties we supplement her 'milkitarian' diet with formula. My vegetarian lifestyle simply does not offer her enough calories to sustain her between meals and because Eleanora does not grow like most healthy babies her belly continues to be tiny (she's still less than 6 lbs and more than two months old). Essentially, she needs more calories in a very small belly as she's becoming more active.

As I began to prepare her feeding tube this morning I noted something black floating in the bottle. What could it be? A worm!!! Seriously. Well, I'm not completely sure. I don't have a microscope handy. Take a look for yourself. It's awfully symmetrical...in the light it appears to have innards...looks like it has a clear head and tail. Nonetheless it's disgusting and shouldn't be in infant formula.

I called the company (I'll refrain from naming them here to avoid a deformation lawsuit) and they dutifully read me their safety protocols. Who cares about safety? Clearly their protocols aren't working. But! They'd like to send me complementary formula. Seriously.

5:08 a.m.

Eleanora has become accustomed to sleeping on my chest (and my husband's) throughout the night. We've also discovered that I stop breathing (while sleeping) whenever Eleanora misses a breath (she is most likely to die this way). I've been waking up exhausted. Sometimes gasping for air.

At 5:08 a.m. this morning I was awoken by Eleanora's lapse in breathing. After trying to arouse her several times--calling her name and rubbing her back--she didn't budge and wasn't breathing. I wrapped her in a blanket and began to get up to go get my husband.

I assumed she had passed. Just as I began to rise, she took a deep breathe. (Relief...)

I have to admit...it was surreal. In many ways I was on autopilot--just going through the motions. I kept thinking...I'm going to have to wake up the girls...how am I going to tell them?...I need to keep her body warm...how do we get to the funeral home...and so much more. I was simultaneously pleading...no, not now...I'm not ready for you to leave...please. It seems impossible to think that all these thoughts happened in the span of a few seconds...a few LONG seconds.

Nonetheless she began to breathe again. We had another day together.

Double Trouble

In case I had forgotten, the last two weeks have been a great reminder that I am still the parent of two other rambunctious children. First I'd like to ask you: what would you do with 1000 individual sequins?

a. Make a prom dress

b. Decorate your shoes

c. Throw it all around your parents house so that every room (and everything) sparkles.

The answer is...c. The girls loved their decorating idea and giggled endlessly about the mess. Humph. So. I took the pixies upstairs and asked them to begin picking up every single sequin. After 35 minutes of crying and pure frustration I brought them freshly baked chocolate chip cookies and milk. They agreed that decorating the house with sequin wasn't much fun, especially picking it up. Problem resolved--or so I thought. Three days later they did it all over again.

The next day Charlotte came down with a summer flu. It lasted 7 days. She was miserable. I was miserable. I spent my days running between her and Eleanora, comforting whomever was crying at the moment. I washed my hands so much they started to bleed. Eleanora is immune compromised and simply cannot get sick.

Immediately after Charlotte felt better, Addie dutifully came down with the flu as well. Round two. Addie was only sick for a few days (it's amazing what growing up in rural Africa can do for immune system).

We're all recovering now. Luckily Eleanora never got sick. She is, however, having more and more challenges with daily life.

Today

Eleanora survived today. It was a miracle. She was dying in my arms and some how, some way she pulled through. The uncertainty lasted for hours. Her color has returned, she's interactive, and sharing her opinions with us as I write. I've decided to not post a photo of her today (it's not how I want people to think of her or how I want her to be remembered, rather I'm posting a photo of her with her blue eyes open--something I have not done to date).

Eleanora is such an impressive little girl and has accomplished so much already. I don't understand how life works or why she's continued to live, but I'm thankful. She's an inspiration and I hope someday I'll better understand why I was given this gift.

Muhammand Ali, Mike Tyson, Evander Holyfield & Eleanora Claire

Eleanora has moved into the heavyweight category (see her double chin)! Watch out Evander! Eleanora is moving up in the world. She's just over 5 lbs 6 oz now, which means she (legally) fits into a car seat, she's no longer in the low birth weight category, and would be equivalent to $8.73 if she were a British pound.

Although most babies weigh more than Eleanora at birth, this is very exciting for us. She's gained nearly 2 lbs since we left the hospital. This also means she's continuing to thrive.

However. Her color is fading, she's having more trouble breathing, and she's not tolerating her milk as well. This is extremely difficult to watch. Watching any child, let alone your own, die is heart wrenching. There is a profound sadness that accompanies you--as you walk the dog, prepare dinner, go grocery shopping, read stories to your children--it's everywhere. But as a parent you come to a crossroads--what is best for your child? To prolong life or offer the best quality of life? This is a soul searching question (the answer maybe different for every family). In many respects we want Eleanora to continue to be with us (which may seem selfish), but our most important wish is for her to be comfortable. So, this means we watch and wait.

We still have hope. She has weathered downturns in the past and surprised us all. I don't know how long we can prevent 'the inevitable.' I guess that my sincerest wish is that she doesn't suffer though. I hope she just falls asleep in my arms.

Happy 5th Birthday!

We nearly lost Eleanora at 28 weeks due to serious pre-term labor, but luckily both Eleanora and I were able to withstand this stress and she continued to beat the odds (little did we know). At that time, however, I did know that having her so early would end her life and so from that point on, we celebrated her birthday every Thursday.

This tradition continues today. Happy 5th Birthday Eleanora!

When Life Hands You Lemons, Make Lemonade

Before I had Eleanora we knew that she suffered from a heart condition that would require open heart surgery. To prepare for this prospect, we worked with a physician team at National Children's Medical Center; however, if there was a more serious underlying condition we wouldn't pursue the surgery.

During that time Charlotte, my oldest child, sold several of her toys to fundraise money for Children's Hospital. She raised $4.00 and couldn't be more excited to give the funds to the hospital to help them buy "tools" that would make children well.

I contacted the hospital. They were absolutely delighted by Charlotte's fundraising and said she was certainly one of their youngest philanthropers in the DC region. Inspired by this notion, both Addie and Charlotte decided they wanted to host a lemonade stand during our community's 4th of July celebrations.

Then Eleanora was born and we learned that she was terminally ill--we would not pursue heart surgery after all. And so, with the help of a dear friend and neighbor, the girls planned the lemon stand. They decided, however, that the funds should go to Georgetown's NICU since Eleanora never went to Children's. After a few hours of Charlotte selling "fresh treats" and "fresh lemonade" and Addie "supervising" the stand, the girls raised $415.54.

We couldn't be more happy for their success. This was their first true effort in giving back to the community and they were thrilled to learn how much they had raised. Georgetown was also very excited to hear about their efforts and we're hoping to have a small celebration with the NICU and fetal cardiology staff that cared for Eleanora in the next few weeks.

This stand was more than a fundrasier though, it was a step in the healing process. The girls were no longer observers of Eleanora's condition and helpless, but rather they became participants in helping other children.

A New Way of Life

This first week home was stressful--would Eleanora continue to live, could we support her needs without the medical team that made her life possible? Each day was marked with new understandings of Eleanora's needs and desires.

For example, Eleanora does not want to sleep alone or in a crib (who can blame her?). Yet, we were concerned with co-sleeping given our exhaustion. And so, as the days continued on Greg and I learned how to accommodate her wishes. Giving her the highest quality of life was, and continues to be, our utmost priority.