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.

New digs

It was day 2 and while most of D.C. weathered a hot June day, we sat in our new digs--an isolation room in the NICU. Because Eleanora's outlook was dire, the NICU staff moved us into this room so our family could have privacy. This was a gracious act--one of the most meaningful during our hospital stay.

We could watch the sunrise and sunset now--share it with Eleanora and even know (relatively) what time of day it was. We sat all day, every day with her. Often waking at 3:30 a.m. and going to bed at 1 a.m. Not knowing whether she'd survive another day was terrifying (and it continues to be). Will today be the last day we'll hold her? Will this be the last outfit she'll wear? Alas. We try to live in the moment and take advantage of every minute we have with her.

Meet the sisters!

Children have an amazing way of shedding a positive light and attitude on any situation. While waiting to meet Eleanora, Charlotte and Addie explored my hospital room, drew Eleanora pictures to decorate her isolette, and decided they enjoyed the hospital food, especially chocolate chip cookies.

By this point Greg and I had met with our physician team (who are very impressive individuals, both clinically and in bedside manner). I anticipated how our discussion would go...I asked for a box of kleenex before going into the the consult room. Deep down I knew.

Yes, it was likely Eleanora had a rare and fatal defect that would likely take her life in the next three to seven days. An emptiness overwhelmed me. This was the conversation I had been dreading throughout my pregnancy. Only much later did I begin to have questions: How could I possibly make the most of our limited time together? How could I comfort her? How long would we have?

You are my sunshine!

While the rest of the country slept through the night, I sat awake staring at our daughter who glowed like the sun. Conflicted with wanting to hold her and her need to be exposed to light therapy, I just sat and watched her. This was perhaps one of the hardest maternal instincts to overcome.

By this point we had not received any definitive diagnosis, but I was searching her physical features over and over again to offer some prelude of the news to come. I still had hope, although deep down I knew; I knew she most likely had a fatal genetic condition. During the pregnancy I spent days reading and educating myself in obstetrics and reviewing the latest medical literature. I knew what I was looking for, but alas I still had hope.

A New Home

After meeting Eleanora, she moved into a new home--from my belly and into an isolette (also known as an incubator) in Georgetown University Hospital's Neonatal Intensive Care Unit (NICU). This became our new home.

We were beginning to learn what ailed our daughter. The news was overwhelming. We had so much faith during the pregnancy that our child's health would overcome the odds. By declining the genetic testing there was no way to know what was wrong specifically, but we had hope--and that was enough for us.

Meeting Eleanora

After declining genetic testing throughout the pregnancy and not knowing the gender of our child, the moment we had been waiting for was upon us. So many questions and concerns we had throughout the pregnancy would be answered. First, would our child survive delivery? What health condition ailed our child? Would it be a boy or a girl? The sense of anticipation was overwhelming.

While still in the operating room we finally learned Eleanora Claire had joined our family (another girl to outnumber my husband, 4:1)--and she was breathing on her own. Although there were many more questions still to be answered, we breathed a sigh of relief.