PICU

Errol, or "the little man" as we are calling him, is in the PICU (Pediatric Intensive Care Unit) on the eighth day of his life, three days out of his first open heart surgery. You can see he's still got his nasal canula (nose oxygen tube), but his eyes are shining, the blood is already starting to circulate better, and his complexion is getting rosy. The operation has put a gleam in his eyes, but it is also companion to a wistfulness and sadness that he should be too young to know. Of course Errol is grateful just to be alive (he's already been through more of a fight than most people ever go through), but he also wants more of life.
At one week, Errol has already learned a lesson we've tried hard (and mostly successfully) to keep our three year old from learning; life can be rough. Errol will be (and there's good and bad in this) tougher than the rest of us. We mourn the innocence he lost at the moment of his birth, but we are all grateful for his life.

As soon as his operation is over we begin to pester the doctors and nurses to get the tubes out. Usually they take Errol's breathing tube out pretty fast. Then we begin to ask about the catheter. Within a few days, the chest drainage tube goes, and then we work on the IVs (he sometimes has three or four), until finally we are just down to the pulse and oxygen monitors. We don't want to rush things beyond safety, but we know that the less he looks like a robot, the closer he is to health.

Day two

Day Two

It’s 1:42 pm on day two of Errol’s tenuous life. You can see me supporting Errol with my hands as the ventilator keeps him alive. I’m still nervous to hold him (he’s encased in a fragile web of wires and tubes, but I want him to feel human touch and warmth). Cary and I take turns breastfeeding (Cary) and holding (me) Errol. Our son is less than 48 hours old and the doctors have tried a couple of attempts of weaning him off his oxygen. Each time he has plummeted towards death and we’ve watched helplessly as his machines count his oxygen level down to zero. I’ve never felt so helpless. I’ve never desired something (his life) so much. There is nothing I can do. But each time, as the numbers get more grim, the nurses catch him, and bring him back to life.

In the NICU it’s always night. The machines are always flashing and beeping. It’s like a casino in purgatory, where winning gets you back up to life. As sterile as the NICU is, there is a power of healing here that is unrivaled in the history of human kind. Miracles (which are not really miracles at all, but the fruit of thousands upon thousands of trials and errors) occur here every day. Only fabulous wealth could create something as amazingly complex and grand as the medical advancement we find ourselves in the midst of. Twenty years ago, Errol would be dead. We feel so lucky to be alive.

We take shifts laying hands on Errol, with someone touching him night and day. His life is out of our hands right now. All we can do is hope there is a tomorrow.

Day four

Midnight on day four. Errol is on a web of machines here in the Neo-natal Intensive Care Unit (NICU). There is a nasal canula helping him breath. There are IV lines going into each of his limbs. There are oxygen and heart sensors all over his chest and neck and there are pulse meters on his toes. He looks more robot than human, but it is his only chance at survival. Dr. Hines will perform surgery tomorrow and give Errol a chance at life.

Hospital

Hospital sweet hospital. It's a bad sign when you are offered the employee discount in the hospital snack bar. It had been about a month when Errol's mother was offered her first employee discount. It was disconcerting when people began to ask me for directions in the labyrinthine hospital. It was even more scary when I could give them. One day on an elevator an anesthesiologist asked me if I was a resident. I asked him if I really looked that tired. Neither meaning of the word resident was very comforting. There was even one family we heard of that had their mail delivered to the hospital on a daily basis.

The hospital never felt like home to us, but it was the first place Errol lived. He had an extended family of nurses, doctors, technicians, therapists and assistants. He was surrounded by people whose whole job was to keep him alive.

Before Errol's birth I was always saddened when the hospital helicopter flew overhead. I thought of it as another damaged person; another tragedy. And while that's sometimes the case, now when the helicopter sweeps past, I think of it as a phoenix, offering someone a chance at life.

Although the hospital saved Errol's life, after our weeks there, I've never been so glad to get out of a place alive.

Errol Grinning

If I were to create the ideal person I would give them the ability to live in the moment. Because Errol suffers from Rubinstein-Taybi syndrome he is unable to live anywhere but precisely in the present.

In order to survive we humans are programmed to think outside of the moment; to reflect on the past and to plan into the future. But this very survival mechanism takes us away from the perfect present and keeps us constantly elsewhere. Errol would not survive in the wild (not that anyone under 21 would) but because of his very inability to think ahead or behind, he is able to live exactly in this wonderful moment. He already has the very thing I most desire into he world; peaceful happiness, and he shares it with all those who are lucky enough to know him.

Birth

In a certain sense we all start dying as soon as we are born, but with the birth of our son, Errol Milner Clifford, death came to take him immediately.

The first sound a healthy newborn makes is a loud cry. From the moment of his delivery we waited for this sharp wail of life. It did not come. The midwife patted his back to force the cry. It did not come. The nurse suctioned his lungs. It did not come. The midwife gave him oxygen. The cry did not come.

Through our tears of joy and exhaustion and excitement we realized that something was wrong with our child. He would not cry. Something was keeping him from this world. Something was terribly wrong.

This was not the arrival we had anticipated. Nothing is guaranteed in life, but we had assumed that the prenatal yoga, vitamins, sobriety, child birthing classes, and good humor we kept would protect us from danger, fear, death, this.

After the heat lamp failed to increase his pulse rate and after the oxygen mask was unable to sustain his breathing we rushed to the hospital ten minutes away. Errol was fading from the new life he had just begun.