Journal I: May 2002

Henry was born in May 7, 2002 and was immediately transferred to OU Children’s Hospital. Henry had several heart defects but the most critical issue was his hypoplastic left heart. A “proper” heart has four chambers or “rooms” – two atria on top and two ventricles on bottom. Henry had a flat, non-functioning left ventricle that was beyond repair. This meant that his “blue blood” (oxygen depleted) and “red blood” (oxygen rich) mixed as it traveled back to his lungs for more oxygen. In “lay mother terms,” my son could never get enough oxygen-rich blood to his body. While a healthy person maintains oxygen levels of 95% or higher, Henry’s O2 sat rates stayed in the seventies.

I tried to chronicle all that was happening after Henry’s birth. For years, I could not look at the journals I had kept during the 55 days we spent at Children’s Hospital. I am sharing these entries, for the most part, unedited. We were a family wrecked.

26 May 2002
I am writing this as my youngest son is in the PICU at Children’s Hospital. He is 19 days old and has already had two heart-related surgeries. He will need at least two more before the age of three. I live in the parent’s hotel, one floor below the PICU.

Another c-section for me. They cut the cord and everything went to hell. He scored a 3 out of 10 on the Apgar. He was intubated. He was a whopping ten lbs with so much black hair that he looked like a gorilla. A pissed off gorilla turning blue before my eyes.

I didn’t hold him. He was gone long before I left the OR. All I remember after that is Gwyn crawling into bed with me in recovery. And everyone else in my family looking terrified. I refused to believe it was that bad.

At some point Medi Flight brought him by in the incubator. Why did we need Medi Flight – they were just taking him across the skywalk to Children’s Hospital? Protocol. I held his hand for a minute through the incubator but he was already unconscious. I recoiled at what I had done.

Henry had a BT shunt at 36 hours old – standard surgery for many cardiac newborns. It helps keep a certain blood vessel open after birth. They didn’t go through the chest but between the ribs on his back. Except Henry managed to clot his shunt over and so they had to do it again, this time through his chest.

I have held him twice, for less than a minute each. Once before he was wheeled off for his first shunt. Once while the nurses changed his sheets. That time he went into respiratory distress. Maybe he just panicked being in my arms.

He has always been on a respirator. They tried to take him off last week but basically he just held his breath. They will try again this week.

On Mother’s Day, they told us it would be a good idea to call a priest, if those were our wishes. But that night he turned it around. It would be the first of many nights when Henry would spiral down and then, quietly and inexplicably, begin to get better.

Before Henry’s BT Shunt, he stayed in the neonatal unit (NICU). A ten pound hairy boy next to one that weighed 26 ounces. The nurses gave me a flannel square to stick next to my chest. Then they covered his eyes with it so that he could have the smell of me and shield him from the bright lights. I found that heartbreaking.

28 May 2002
My son refuses to let us know why he won’t breathe. Cardiology blames it on the lungs, the PICU team blames it on the heart. Maybe he has an infection, maybe he is just taking a long time to recover from surgery. Maybe he won’t make it.

Now a neurology team has been called in to rule out intracranial bleeding. Henry could be having seizures that none of us can see. They promise to try extuabtion again tomorrow (remove the ventilator). Yet another new doctor comes in and says he pretty much expects the procedure to fail but “we gotta try anyway.” I count Henry having 16 doctors on his case now. How could I have caused so much damage?

But Henry was awake today and looked around for a good ten minutes. A friend came by and stroked his hair, spoke to him and he stared at her for a long time. Never has with me. Just moments where he looks at me and then looks away as if he’s more disappointed in me than he can bear. I’ve never felt more like a failure. My self-proclaimed crown jewels – my education, my will power, my other healthy children – are pointless here. The one thing that is supposed to be simple female biology – making babies – I have totally fucked up.

I’ve had too much time on my hands. Tethered only to my breast pump, my son’s gripping fingers. Severed from my home, Ned, Ian and Gwyn.

Each day Henry goes through too much -- an IV, treating his wounds, adjusting his central line. I’ve lost count how many times these things seemed necessary. Henry screams in silence because his vocal chords are paralyzed to accommodate the ventilator. Then he passes into fitful sleep. Never too deep because I think he is already wise enough to know someone will be back to hurt him again.

Inexplicably, children in the neighboring glass cubicles are gone in the morning. Discarded space with medical debris on the floor, the beeping machinery silenced. Did they get to move downstairs or did they die? Can I be happy for another child who is well onto her road to recovery or have I become so traumatized that I can only rally for Henry?

29 May 2002
Extubation aborted. Failure to breathe on his own. I think of the baby birds in our yard this spring. Three made it out of the nest and flew off. One fell to earth and died.

31 May 2002
Blessing, a few months older than Henry and in a medically induced coma, was in the room next to us. Her mother delivered in prison. Blessing’s grandmother would come and sit with her when she could but she lived far from Oklahoma City. We always waved to one another. I wish, just once, I had gone over and spoken to her.

Someone else comes to visit Blessing today. A young man has heard about Blessing and wants to offer prayers. After he is done, he sticks his head into our room and asks if he can pray for our baby. Ned invites him into Henry’s room. I have to get out for a few minutes. It hurts to inhale.
Today we wait for the cardiology team to give us their final “action plan.” We hope open heart surgery is still an option but they have said before they don’t know if they can repair this. One doctor actually tells me that Henry is one heart defect away from being a miscarriage. Miscreation. Misbegotten.

When I return to the room, the volunteer supplicant is still here, trying to pinpoint the exact nature of the defect with Ned so that he can pray accurately, on the mark. Then the three of us circle Henry and he prays for a healing fire to be brought into our boy’s heart. As if God can deliver a divine smelting to the broken parts. He prays for Henry’s mother and father and closes with, “This is your child God, and we thank you.”

Later that morning, the young man is kicked out of the PICU for praying over other people’s kids.

In the afternoon, Dr. Ward takes us to a conference room to attempt to explain what has gone so wrong. Here are my meeting notes:
AVSD: Atrioventricular septal defect.
HLHS: Hypoplastic left heart syndrome.
The heart has four rooms. The atria are the upper champers and the ventricles are the lower chambers. So, an AVSD is a defect of the wall between the atria and ventricles. Real trouble is Henry’s left ventricle which is so underdeveloped as to not work at all.
The tricuspid valve is located between the right atrium and right ventricle, the mitral valve is the same but on the left side. In Henry’s case, he really has just one valve. This should be a four bedroom house with two staircases, we got a three bedroom house with one staircase.
The septal defects (holes, really) allow Henry’s oxygen-rich blood (red) from the left side of his heart to flow into the right side where it mixes with oxygen-depleted blood (blue). Then this mixed blood goes back to his lungs. This makes his heart beat faster and creates pulmonary hypertension. The kid simply does not get enough blue blood to his lungs to re-oxyginate and be sent out to his body.

I think that’s right. Hell, I don’t understand any of this.

The surgery will divide the one valve into two and close the septal defects. Then they will attempt to get Henry’s heart working with just one ventricle. The right ventricle is too small to make functional. The valve will probably still leak. We’re looking at three more heart surgeries. At least.

The possible complications are an abnormal heart rhythm which would require a pacemaker. Residual valve leakage. Infection, clotting, bleeding out, anesthesia complications, being on the heart bypass machine (ECMO).

Our second option is to go on the heart transplant list – either St. Louis or Houston. He would be listed as a 1A which is apparently the top of the list but we should still expect to wait six months to a year. He would stay in the hospital wherever we went and be on a trach tube or respirator. Those chances to survive are given as 65%.

Are we being too heroic?

1 June 2002
We sit and wait another day for the doctors to come. Ned and I actually discuss me and the kids moving to Houston so that Henry can go on the transplant list there (they don’t do pediatric heart transplants in Oklahoma). This isn’t a remote possibility. It is one of two possibilities if eliminate allowing Henry to die as a choice. What happens if Henry’s surgery doesn’t work or he doesn’t get a new heart? The doctor cheerfully notes that some kids like this “live to five or even seven years old.”

I adore the doctors and despise them. I am a pleading, desperate parent before them. When they extend our hope just one more day, I want to erect monuments to them. When they allude to the fact that it might have been best if Henry had never been born, I wish our situation into their personal lives. In the month we have been here, they have never bothered to learn our names. I’m “Mom.” They often ask Ned, who is there every day, “Are you Dad?”

Finally, the team came in. Henry is slated for surgery for AV valve repair. His odds are presented as 70% to survive the first open heart surgery and make it to the next one, a handful of months down the road.

I call my family and try to rejoice that my child was deemed healthy enough to attempt this surgery. Certain things I cannot help but imagine. The ribs being cracked open, his heart being stopped, the bypass machine taking over. Henry bleeding out or clotting too quickly. Again. The doctors muse, “You just never know what this kid is going to do.” Pneumonia and RSV are going around on the PICU floor. Henry may have another post-op staph infection. So much to consider as if these concerns were normal for a mother.

2 June 2002
I learn more about Blessing. Some days she shares a nurse with Henry. I know patients are supposed to have their privacy but the nurse tells me a little bit about what is going on with her. Blessing was born three months early. She has been on the ventilator so long that her vocal chords fused to it and now the surgeons have to detach them from the tubing. Instead of thinking of Blessing’s suffering, I only worry if that will happen to Henry.
Blessing’s grandmother has not been around the last few days. Who will Blessing go home with? Will Blessing ever go home?

I spend a lot of time thinking about the other mothers on the PICU floor. On the other side of Henry’s room is Emilio, a toddler often jumping in his bed. Whatever his medical condition, Emilio has an activity level unlike any of the other PICU kids I’ve seen. His young mother whispers to him, “por favor, mi amor, calmate.” But Emilio is ready to ditch this joint. Emilio’s mother steps out for a moment and an aunt takes her place. This makes the boy dissolve into tears.

Emilio’s nurse barges in and demands to know what’s wrong. When the aunt struggles to respond in English, he barks, “Donde la madre?” The aunt meekly points down the hall and the nurse storms out, clearly annoyed that this family is not proficient English speakers. His Spanish wasn’t going to win any literacy awards, either.

We’ve had this nurse. It is an unbearable balance for me to let him treat my child with all his medical expertise all the while wanting to point out that he could use a heart transplant himself. I’ve never heard him speak once to Henry. It’s not that he is rough with Henry but he just has this attitude that he is tending to potted plants rather than human beings. One night, when the nurse was attempting to adjust Henry’s breathing tube, my kid had a meltdown. When my soothing didn’t seem to help, I asked the nurse for his input.

His response was, “Were you messing with him before I came in?”

I am out the door to track down the charge nurse, Grant. This man will not be treating my child again. Grant listens to me as he must do a dozen times each week from hysterical parents and agrees to have our nurse replaced.

But then Grant teaches me something. This nurse may not have the best bedside manner but he is also one of the most competent nurses on the floor. He was specifically assigned to Henry because his case was so critical and Grant felt like my child deserved the most watchful nurse he had. As gently as he could, Grant reminded me that Henry’s life was at stake here and that there would be plenty of painful moments ahead for him, for all of us, if he was ever going to leave this floor.

I exhaled some of my anger, leaned against the nurses’ station and just fell apart. Grant, this Harley- riding bear of a man, gave me a hug and then left me alone. I was far from the most important thing he had going on.

Logan is a newborn with a brain tumor, one so large that the residents crowd around him to see it pulsate through his fontanelle. It’s like they’re on a field trip. I see Logan as I walk to and from Henry’s room. His mother reminds me of myself a few weeks, a lifetime, ago. When her husband insists she take a break, she can’t stay away for long. She rushes back to Logan as if she might stop breathing herself if she can’t see with her own eyes that Logan’s chest continues to rise and fall. I want to tell her, “You’ve got a ways to go, pace yourself.” But she has yet to notice there are other mothers on the floor.

I am stunned to learn you can be born with cancer. Seriously, what was God thinking?
Then there is the cystic fibrosis mother, her adolescent son tucked away in a corner room, dying. When she is not curled up in bed with him, she stands sentry at the door. Her glare warns us not to try to peek in on her son’s last bit of living.

3 June 2002
Henry has developed blood blisters on his thighs. Why? Is this sepsis or just a reaction to the injections they have been giving him there?

There is another mother on the floor I want to meet. Her daughter is a year older than Henry and just had her aorta replaced with an artificial one. I know all this because the girl’s grandfather and Ned have talked. But the mother never leaves her daughter and they are on a side of the ward I have no business being on. I want her to seek me out, share her story. All I know is that her daughter’s name is Malley.

I wonder if PICU moms develop a progressive, psychosomatic dementia. I know people are speaking to me but often cannot tell you what they are saying. Today, the cafeteria cashier said “$3.35, please.” I just stared at her if she had spoken to me in Arabic. People keep asking me to speak up but there is nothing wrong with my throat. It just seems like the distance between my brain and my voice are an ocean apart.

I rock and sway. The only stimulation I can bear is the beeping of Henry’s life sustaining machinery. Hugs, shoulder rubs begin to hurt. Maybe I have latent autism. The sun is too damn bright so I stopped looking out windows, can’t even imagine going outside.

Stephanie comes to visit with her ten week-old, Coleman. I know she is devastated, terrified by the proximity of this to her own baby’s life. Maybe I am more in touch with her pain than my own. I can’t find a way to say, “I’m okay your baby is perfect.” She can’t find a way to express her concern and sorrow. I know she is in a state of both disbelief and relief.

5 June 2002
I am home now, for just the day and I hate it. My healthy children are too loud, too robust. My mother-in-law has too many questions, my own mother too cheerful. The entire house is a wreck but I intensely focus on dusting the china hutch, the least important thing I should be doing. Then I am exhausted and want to go to bed but I worry the hospital will call and I’ll miss it.

The plan was to come home with a baby, not for a month of my life to evaporate. Not to leave behind my baby. Not to leave him to violating medical treatments, some downright agonizing for him (scrubbing pus out of his infected chest wound, trying to find a vein in his ankle three goddamn times for a blood culture). I am emotionally negligent. What if no one holds his flailing hand?