To the mom whose baby is still in the hospital

When Daniel turned one month old, he had just had the Norwood operation four days before. He was intubated and extremely swollen. He would open his eyes when they suctioned him, and his swollen face would turn red as he silently cried. I couldn’t stand it. It was almost too much to bear.

With my other children, I took monthly pictures their first year of life. I would post their cute pictures on Facebook so that I could look back and see how much they had grown.

With Daniel, I couldn’t stand the idea of taking pictures of him like that. As I am sitting here writing about it, my chest is starting to feel tight, and I can feel myself panic a little bit just at the THOUGHT of those weeks after surgery. I feel like I have PTSD. I have no idea how I am going to deal with it for his next surgery, but that is a topic for another day.

On August 14th, I spoke to my friend Jennifer on the phone and told her how I felt. “I just can’t stand the idea of taking pictures of him when he looks like this,” I said. “He is just so swollen and so pitiful. I can’t stand it.”

She immediately said, “No, Staci! You have to take his monthly picture! You can compare it to next month and see how far he has come!”

Begrudgingly I agreed, and I am so glad she gave me that advice. When I look at his two month picture and compare it to just a month ago, it reminds me of how precious life is and how thankful I am for every single day. Daniel has come such a long way. He has fought and suffered for this life, and I am going to do my best to help him live it to the fullest.

To the mom whose baby is still intubated, to the mom whose baby is on ECMO, to the mom whose baby still has his chest open, don’t lose hope. Take pictures of your babies. Share their stories with people around you. Celebrate their journey. All of these children have different paths, and their happy endings do not all look the same. The strength they have, the fight they show, the resilience they demonstrate are inspiring, and that is worth remembering no matter what.

Imagine you are home with your baby. Imagine the hospital is a distant nightmare you shudder to remember. Imagine that the day ahead of you is filled with happy moments at HOME. One day you will be there, and this will all have been worth it.

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