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.

Homecoming

Finally. We were able to go home--albeit on hospice care. Eleanora was no longer reliant on modern medicine to survive. Her health was relatively stable and we were now trained on how to care for her in our home.

Perhaps her homecoming was most meaningful to our daughters. For months now, they had talked about bringing home their baby brother or sister home from the hospital. The girls had jointly planned a homecoming and belated one week birthday party for Eleanora.

The challenge now was transporting Eleanora home. Car seats are designed for babies over 5 lbs, certainly not for our 3 lb pumpkin. We improvised and eventually got her settled into the seat (ensuring that she won't suffocate). For emphasis, I added the small travel size Johnson & Johnson shampoo into our going home photo to demonstrate just how tiny she was.

Graduation!

Today, Eleanora graduated from an isolette to a crib; she could now maintain her own body temperature. This was very exciting for us. While she was spending literally no time in her isolette (we held her nearly around-the-clock), Eleanora was starting to shed the clinical tools required to perpetuate her life. She was surviving and beating the odds.

However, our first night in the NICU's isolation room was . We decided that Charlotte and Addie should visit as soon as possible to say their last goodbyes (in the event we didn't have much time left). And so, the next day both girls visited and spent time alone with Eleanora.

Discussing death and explaining the prospects of Eleanora's life to my children was (and will likely always be) one of the most difficult and emotional conversations I have ever had. That evening our children explained to Eleanora the wonders of the world (such as rainbows and fairy tales) and how much they loved her.