Elle

I’m sorry it’s taken so long to get in touch. You see, I’m the mother of five children. Well, I tell other people I’m the mother of four but really I’m the mother of five. And, I don’t say I’m the mother of four because I don’t think about Anna, but because it makes other people uncomfortable. They’re uncomfortable because they think I’m uncomfortable – but I’m not. I would love to talk about Anna just like all my children.

My husband and I started having children early. We had my son and then at 22, I became pregnant with the twins. I had preterm labor and was considered at risk and had met the staff at the NICU through those experiences. I was 24 weeks along when I went to a wedding. We went there on a Wednesday to go to a shower before the wedding. But, something was wrong. I just didn’t feel right. So I called my husband and told him we had to go to the hospital. We were about 24 miles away from our local hospital in Fort Madison. We got about halfway there and I told my husband, I’m going to have the baby.  And I did – six miles from the hospital.

She was tiny – just like a tiny bird. And I had always heard babies’ eyes were fused shut when they were born, but she was looking right up at me with these huge eyes and I just thought – she’s mine. She wasn’t crying; I didn’t know what to do but my maternal instinct told me I should suction out her nose. Just as I went to do that, she let out the tiniest, faintest cry.

Of course, my husband could barely concentrate on the road, so we ended up passing the hospital and doing a u-turn. Finally, we drove up to the hospital. All the doctors ran out, took Elle – or Twin A as she was then known -- and ran back in. I was still out in the car and Anna (Twin B) was born in her bag of water. All the doctors were gone, so my husband just picked her up and ran her in like a football for someone to take care of her. So then I was alone in the car. Our brand new Ford Explorer, which we had just bought three weeks ago, and was now the birthplace of my two 24-week-old twin daughters.

We had called Dr. Dagle at UI Stead Family Children’s Hospital so he knew that we were headed to the hospital. Dr. Dagle and his team had taken the AirCare from Iowa City and were in Fort Madison to stabilize and transport the girls to Iowa City. I don’t exactly know what went on, but I heard all this commotion outside my room. Dr. Dagle and the other doctors were arguing. One group wanted to bring in Twin A for me to hold and Dr. Dagle wanted to look at her first. Eventually, I pieced together that they wanted to bring in Twin A for me to hold because she had passed away. She had been clinically dead for thirteen minutes. I’m not exactly sure what transpired, but eventually I heard Dr. Dagle say, just put the baby back on the table. And he found a faint heartbeat. Twin A was reintubated. Both my girls were still alive.

Once everyone was stabilized, we transported to Iowa City, my twins in one ambulance and me in the other. One the way, I named Twin A – Eleanor Ryan. When I arrived in Iowa City, I got to my room, and there was a sign saying, Congratulations, its twins! And beneath it, Eleanor, one pound 13 ounces. And Anna, one pound nine ounces.  It was so amazing. They were ready for our 24-week twins even when we weren’t.

Of course, seeing one beautiful name above Twin B nudged us to think of another name, and Twin B was soon Anna. From the beginning, Anna was always doing better. Her O2 saturations were better, she seemed stable, she would look at me when I came into the room, and her tiny hand would clutch my finger if I reached out. Elle, on the other hand, was my troublemaker. Her O2 saturations were terrible, her numbers were always off – she was always doing something.

And then seven days passed.  Dr. Bell came up to me and said, I think Anna’s taken a turn for the worse. I walked into the room and instantly I knew he was right. She didn’t gaze at me and one eye was half closed. I reached out my finger and she didn’t want to grasp it. We did a brain scan to confirm what I already knew – Anna had experienced a major stroke. We made the decision not to further resuscitate Anna. And, I was at peace with that decision. Earlier it the week, I’d seen the privacy screen that they put up at a room when a child dies. I’d seen that screen and felt so terrible for the parents. I’d thought, “I bet they wish they had my story – me here with my two tiny daughters.” But then the gate was placed at my bed, and for the first time, I knew how those parents felt. You don’t want someone else’s story. Or someone else’s life. No matter how bad things were, I still just wanted my story. Anna and Elle were my story.

That day, I went over to Elle’s bed and we made a pact. I said to her, you are leaving with me. I don’t care how, but you and I are walking out of this hospital together. I kept a journal every day. In it, I would talk about how I was doing and how Elle was doing. I would write down the goals that the doctors would set for Elle for the week, and then talk to her through the journal, encouraging her to meet her goals.  Both the good and the bad made it into the journal. I told Elle when she made me sad, when I was frustrated with her, and when she was doing really well and meeting her goals. I talked about us leaving and cheered on our inching closer to that goal. It was helpful to me when I was having a really bad day, I could turn back a few pages and see that we had just had a good day – and that I was able to make it through. It helped encourage both of us.

I thought Elle would go home at Christmas. So, I bought her this beautiful Christmas dress and got all ready to take her home. But, that wasn’t going to happen. The Christmas dress just hung at her bedside for two days. On Christmas, one of the nurses helped me dress her in it. Of course, she cried and cried, but she was in her beautiful dress. Christmas came to Elle that year.

Elle went home on Valentine’s Day -- eight months after she was born. Her doctors told me that she would likely never walk or talk and that she may have severe cerebral palsy. I know they thought I wasn’t always realistic, and I appreciated knowing all the spectrum of possibility for what Elle’s future may hold. But, we had made a pact to leave the hospital together and that was all I cared about. She was my daughter and I loved her no matter what the future held.

When we got home, I really worked with her. I would have her in the walker and just introduce her to everything. I kept up the journal until she was four years old, detailing how she was doing – and eventually adding in how her brothers and sisters were doing, we I had two other children after Elle.  Elle has so much of that determination, that fierce dedication that I needed to keep it together in the NICU, to keep believing in her, and to know that one day the two of us were leaving this hospital together.

Elle is such an incredible, now 13-year-old girl! She is on the swim team and an excellent swimmer. She works harder than any kid I know. We don’t just study – we sit at the table for hours at a time. Sometimes she cries, or I cry, as we muddle through the intensity of trying to understand. But, Elle sticks with it. We just got her last report card – all A’s except one B in choir and one in math. Amazing.  She reads the journal that I kept in the hospital. And, she treasures the keepsakes from Anna that the hospital gave us. We have her footprints and a few other momentos. And sometimes Elle feels Anna. The day her math test was postponed, Elle told me it was Anna that had granted her a miracle that day!

When I look at Elle, I’m still amazed that she was the tiny 24-week baby born in the back of our car. No one who sees her today would ever guess. And people ask me how I did it, how she survived, and really all I can say is we were lucky we were at University of Iowa Stead Family Children’s Hospital. Her doctors and nurses were incredible not just for what they did for Elle, but for believing in her and believing that she could make it. Not every baby born as early as Elle even gets that chance at life; we were so grateful that not only was the team at Iowa able to give her that chance – but that they fought for her every step of the way.