Guarded Hope

It wasn’t until something that I wanted so badly was completely out of my control that I understood what it meant to hope. I didn’t know what hope was until it was all I had.

When I found myself in the emergency room, I remember the doctor explaining to me the gravity of the situation. He said that I had severe preeclampsia. I would have my baby soon. I was only at 24 weeks and assumed he meant somewhere closer to 30 weeks. I have heard of 30 week babies being delivered. However, the doctor wasn’t finished. He continued to say that if my blood work did not look good, I would have to have my baby immediately. I cried while I waited for those results. There was nothing else I could do.

Fortunately, I was given a reprieve. I was allowed to carry on with my pregnancy while on hospital bed rest. In the best case scenario, I would be able to carry until 32 weeks. I was afraid to hope for 32 weeks. I could only hope for my baby to reach 1 kg before delivery.

My baby was delivered at 26 weeks. She weighed 790 grams.

The first time I saw her, I was only able to hope for her survival. Each day, I stroked her head and hoped that she would make it to the next. Gradually, she got stronger. It seemed too greedy to hope for her to come home. Instead, I settled on hoping for improvement each day. There were days, I wasn’t so lucky. On those occasions, I regressed to hoping for survival.

That is how Charlie’s NICU stay went. I hoped one day at a time while constantly being reminded “Never trust a preemie.”

One day, her doctor used the word “home”. It was too much. He exceeded what I could hope for. I started crying in the middle of the conversation. I knew she would come home eventually. However, up until that moment, I felt like it was too much to hope for.

We left the NICU almost six months ago. I continue to find myself hoping. Due to her developmental delays, I find myself hoping for each milestone or for therapy goals. Some days, I hope for and delight in the slightest signs of progress. I was asked to set Charlie’s long term goals for Early Intervention. I find this task to be impossible.

What I want and what to hope for are two very different things. I want her to “catch up” by the age of two. I want this whole preemie thing to be behind us. I want it to be a history and nothing more. But, I can’t hope for that yet.

I can hope that she will walk. I can hope that the momentum gained in physical therapy will continue. I can hope that she will learn to eat.

To me, hope is a double edged sword. It is what is left and what I cling to when things are out of my hands. Conversely, hope is a reason to carry on when jaded and weary. It can be crushed in an instant. After so much loss and heartbreak, it is important that I guard it. I look forward to a time when I can hope without restraint.

About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

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