The doctor's eyes were wide and red. His voice and hands, with fingers spread wide, shook. Our daughter, a scant two days old, needed to be transferred to Doernbecher Children's Hospital. She had a rare and most dangerous congenital heart defect. She would need surgery. Our world collapsed.
That was a little less than seven weeks ago. Jane is just now over seven pounds. But she is alive and she is growing. Born full term with Hypoplastic Left Heart Syndrome, her fragile life was put on hold while the vast, but limited, powers of the medical world worked to give her a chance. Without their help, without the science fiction surgery she endured, she would be dead.
We've been home as a family for a little more than two weeks. Those other weeks, a blur of tears, were the hardest of our lives. I am uncertain of how to explain any of it and don't know that I can. The claustrophobia. The uncertainty. The fear. The pain of watching your wife struggling with her own pain. The impossibility of seeing a new life, a beautiful person not yet formed, given this immense burden. It's all too much, but it was unavoidable.
Trapped in a smoke filled tunnel, the carbon on your tongue, the black bull of a train hurtling towards you, the air roaring. After you've picked yourself up, you step forward, lean into it, and stop the train. You have to. You do it with a thank you to the salty nurse with the strong warm arms. You do it with smiles and laughter despite the gasoline in your throat. You do it with friends and family and everything that matters. You have to. Nobody wants to step on the tracks but there you are. But you don't stop a train. You hop on with a song.
This is our new normal. We have a "cardiac baby". We fret over all the things new parents do but with a few extra layers of anxiety. We chart her growth, her blood oxygenation, and hone our tracking and administration of her eight or nine medicatiions (see? I already lost count - thankfully Erin is a detail oriented woman). We watch her skin change colors like a cuttle fish. Pink = warm and sleepy. Hints of dusky blue = anxious or cold. And we watch Jane flourish at home as she never could at the hospital. She's getting chunky and noisy, the way a baby should. Diapers are filled and bottles emptied, sometimes at the same time. She is beautiful and she is ours. And, no, she never lets us sleep.
We don't yet know what this means for our future. Jane has at least two more serious surgeries ahead as the doctors work to fully convert her heart to a three chamber heart (us "normal" folk have four chambers). The first in three to six months, the second in three to five years or so. Neither is as risky as the one she endured on her eighth day of life, but these open heart procedures are nothing to take lightly.
At the least, this has radically changed our financial situation. A group of incredibly generous friends, family, and some strangers are donating funds to help defer costs but there is a growing hole to fill. I will be having a blow out studio sale in the coming months. And if there were ever a doubt about my path in life, it is gone. The luxury of time has evaporated and this little art thing is my best means to take care of my family. More work must be made and it must be shown. I don't know if the gallery owners yet know what persistent means.
I was unsure of how to present this or if I should. I know how dire this all sounds. But we are realistically hopeful. We are fortunate to live near one of the finest children's hospitals in the world and we are doubly fortunate to have so much good in our lives - good families, friends, and enough wisdom to recognize it. The two big goals for the year are to have fun and keep Jane alive. With a little luck, some hard work, and the support of so many good people, we'll do them together. She is beautiful. She is strong. And she is ours.
We can't thank enough those of you who have helped us through this ordeal. Know how much it has meant and will mean in the life of this child.
Go Jane Go!
p.s. Jane has made a very strong case for being an only child.
Fresh from the oven, though full term she wasn't not quite fully baked
The night before the hardest day of our lives, the night before we knew.
In the NICU, where she spent a week prior to the surgery
The second hardest day. In the nest of wires and tubes, a paralyzed baby ("Analog Jane", the name given her by my friends at Adventure Rider, refers to the dream of her being free of the machines).
Finally, finally able to hold her again.
Her entourage in the intensive care
She made remarkable progress.
The "car seat challenge". Two weeks after the surgery, we thought, again she might be going home. We were wrong.
After another stay in the intensive care, she was almost ready to go home. All the stress, the back and forth, she had lost weight she couldn't afford to lose.
Finally, just shy of a month, we were headed home
At home she blossomed.
I couldn't do this alone.
There are many more photos in this Smugmug Gallery