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.