Our Lives Before

The best place to start is who we were before Henry.   It’s the part of the story that seems so mundane. I certainly had no idea my life would be submerged into a world of congenital heart defects (CHD), pediatric intensive care units (PICU) and organ donation.

Ian’s cesarean delivery in 1999 had several complications and he stayed a week in the NICU. Additionally, he was born with just one kidney. I was seriously shaken by the experience. Turns out having just one kidney is often not that big of a deal and Ian has never had any repercussions from this birth defect. His only medical regimen involves an annual visit to the urologist for an ultrasound. Then Ian is off to school to share the ultrasound pictures, proudly announcing that while he may only have kidney, he has two perfect “tentacles”(testicles).

I continued studying and working as a graduate student, splitting my week between home and campus. Early on, Gwyn exhibited her creative, often bossy, side and Ian was only too happy to serve as her minion. Soon after Ian turned two, I decided it was time for our family to join a church and chose St. Paul’s Episcopal Cathedral.

I sensed God was punishing me for my lack of church attendance because I became violently ill the moment I entered the sanctuary. I felt certain it would be bad form to puke on the lovely embroidered kneelers that the church ladies had tended to for a century. The thing about the Episcopal Church is that there is a lot of audience participation. We may not be shouting “hallelujahs” or dancing down the aisle but we are standing, sitting, kneeling, sharing the peace and singing those upbeat eighteenth century hymns.  All I wanted to do was shove Ned off the pew, lie down and make the kaleidoscope of stained glass windows stop spinning.

I stood up one more time, began to sway in utterly non-Episcopal fashion, when a man behind me steadied me and asked me if I needed to step outside.  Great, I am being kicked out church after being there all of thirteen minutes.  I went out to a quiet garden on that beautiful fall morning.  The nausea subsided.  With my head between my knees in what God must have deemed was the best prayer position I could assume, it came to me.  I’m pregnant.

And just barely.  With two small kids and the work/school schedule that Ned and I were trying to keep, one is very certain the last time any frolicking took place.  I was exactly one week knocked up.

Henry was not planned but I certainly wanted a third child.  When we left the church that morning, I told Ned to stop by the drug store so that I could pick up a pregnancy test.  He thought I was nuts, that even if I was pregnant, there was no way I could know that soon.  I love how the men folk are always explaining female biology to us.  That pregnancy test came back so positive it was quite possible I was carrying a litter of kittens.

I was delighted and Ned was stunned. And then he totally got into the idea and I freaked out.  Early on, I had an unrelenting sense of apprehension.  Maybe it was because of what we had gone through with Ian’s delivery.  I always believed I had zero maternal instinct.  I’m the mom who fails to buy her kids snow boots or put sunscreen on them.  I love being a mom but I could not say I was hardwired to do a great job of it.

But I believe my worry had more to do with God preparing me. And so, when we went for our second trimester ultrasound and the room got frighteningly quiet, I already knew. The technician stepped out to find the doctor.  Henry was moving a lot so I knew he was still with us but I immediately wanted to know what parts would be missing this time.

The answer turned out to be that the left ventricle of Henry’s heart was incomplete and would probably never be functional.  The entire organ looked malformed –flimsy valves, a coarction and septal defects. The maternal fetal specialist could not tell us the full extent of the damage but that heart surgeries or a termination were our only options.  At eighteen weeks, with our family smitten with this boy, our decision was already made.  For the record, I am pro-choice.  This was mine.

We were told Henry’s terribly constructed heart was just a matter of fate. That is a lot for a mother to swallow.  I needed a reason why and decided I was at fault.  I could not grow healthy babies, probably due to my diabetes.  When I was pregnant with Gwyn, I was diagnosed with gestational diabetes. I had the misfortune to remain Type I diabetic after her birth, which is not common.  Pregnancies of Type I diabetic women have higher incidence rates of birth defects but there are thousands of healthy babies born to diabetic women each year.  With both Ian and Henry, I had maintained good blood sugar levels.  My endocrinologist never dissuaded me from having more children, she simply urged me to have an earlier ultrasound and monitor more blood sugar even more carefully. 

I had learned to live with an insulin pump as a diabetic and rather naively thought that Ian’s missing kidney was the worst damage I could do to my children.  When I left Henry’s ultrasound that day, I hated my own body. Why was I such a toxic waste site for incubating children?  Clearly, my disease, eggs or uterus were corrupt.

During my pregnancies, I kept journals that I intended to give to whatever kid happened to inhabit my uterus at that time once they grew up.  Two months before Henry was born and after we had learned about his heart, I wrote:

Henry,

Have a sound heart. The doctors say it is defective. You are so peaceful in me.  You even make me (me!) tranquil. So now you need to prove them wrong, come save your mother, be the baby boy we can bring home.  Fat, happy, blood flowing however it needs to, peace-bringing Henry. 

Insisting that my child-in-utero was some ethereal , relaxed being must have offended Henry because not long after he became obnoxious in there.  I started having pre-term labor and was sent to bed.  Two days before our scheduled c-section, I wrote:

I don’t have any decent reasons for why I have not written more often.  I hardly know what to say.  It’s not that I didn’t write in case something went wrong.  Something has already gone wrong. I am beyond in love with you but also consumed with guilt, sorrow and self-indulgent pity.

I am in bad shape physically, too.  I’m immense with gallons of amniotic fluid plus the estimated 8 lbs of you. You’ve gone from mellow child to hell knows what you’re doing in there.  All I feel is your head lodged in my pelvis and your chunky butt twisting underneath my heart.  You terrify your father with the way you move in me.  He thinks I may explode. 

You’re to arrive two days from now, May 7.  I really wanted a Cinco de Mayo baby but the doctor has a colonoscopy planned for himself today (as if that is a legitimate excuse). I am sad to see you going, despite the miserable pain I am in.  You’ve made it very clear that you don’t like pre-term labor, fighting back with each contraction I have.  As if you are pissed off there’s any sort of expectation that you’ll have to move out of there.

For about six weeks, we’ve struggled day by day, sometimes hour by hour, to keep you in there.  Almost every night, I lug myself to the couch at 2 or 3 a.m. where I watch news specials about serial murderers. If you become an axe murderer, you’ll know who to blame.

This is what I wished I had known then.  It is estimated that one in one hundred children born in the United States has some form of CHD, meaning that CHD accounts for approximately one-third of all birth defects annually.   Overwhelmingly, doctors cannot conclusively pinpoint why a fetal heart fails to develop properly.  Some CHDs are so minor that they are never detected and many repair themselves within the first year of life.  Other CHD children need one, two or several surgical procedures to improve the quality of their lives.  It is also true that some babies are born with hearts that cannot be repaired.  Here, some families are fortunate enough to receive heart transplants but others are not.  There is the tragic irony that some children are just too sick to be placed on an organ donation waiting list.  Others die waiting.

I doubt that, save for conjoined twins and septuplets, a uterus has been imaged more than mine.  After that ultrasound, Henry had a team of doctors preparing for his arrival – maternal fetal medicine, cardiology and neonatology.  Every week, I went in for another ultrasound and when I saw Henry he did not look sick or failing to thrive.  He looked fat and hairy and almost always sucking on his two middle fingers.  He was dreamy to look at, sweet and soothing, even though I suspected a nightmare was before us.

Journal: Henry I

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 extubation 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 left 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 we 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 two months early with birth defects.  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 el 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 fluency 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 once speak 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 fontanel. 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?

There are three ways parents live around their PICU kids.  Some commute daily from home.  Seven lucky families who make it to the top of the waiting list (and can afford it) stay in the hospital hotel.  The last group lives like refugees in the PICU waiting room. There, the geometric grid of the hospital carpeting serves to stake out squatting rights.  Food is left out, a mother is putting on deodorant while explaining her child’s traumatic head injury.  Somehow they all get along with just one t.v., one phone and no privacy. Couples sleep here, spooning one another on pushed together benches like they must do in their beds at home. Here families receive promising and devastating news about their child.

Journal: Henry II

6 June 2002

There are three ways parents live around their PICU kids.  Some commute daily from home.  Seven lucky families who make it to the top of the waiting list (and can afford it) stay in the hospital hotel.  The last group lives like refugees in the PICU waiting room. There, the geometric grid of the hospital carpeting serves to stake out squatting rights.  Food is left out, a mother is putting on deodorant while explaining her child’s traumatic head injury.  Somehow they all get along with just one t.v., one phone and no privacy. Couples sleep here, spooning one another on pushed together benches like they must do in their beds at home. Here families receive promising and devastating news about their child.

I think I am a snob in their eyes because I rush by there each day and refuse to share my story.  I did try but the first waiting room mother I met was obnoxious.   She offered me a muffin and told me how proud she was that her eleven year-old daughter, on dialysis, had told her nurse to fuck off that morning.  I took the muffin because it seemed like good manners to do so.  She attempted to orient me to the waiting room’s unwritten laws – don’t move any chairs, they are already staked out.  Always answer the waiting room phone and take a message.  Of course, this would only be productive if the hospital provided a note pad, pen and bulletin board.   

I stopped her welcome wagon act by curtly informing her I had a hotel room and would spend most of my time in Henry’s room.  I did that to distance myself from the waiting room set.  I didn’t want to be in such dire straits, even though I clearly am. It was hard enough to talk about Henry to people I knew, let alone with strangers. I didn’t want Henry’s story to become waiting room gossip even though I clearly craved news about other children on the ward.

Why does this crowd, this thrown-together community, bother me so much?  Partly because the waiting room is raucous, often more of a summer BBQ environment than what I anticipated it to be:  small family clusters, whispering their grief, staying the hell away from me. The waiting room, for me, is the PICU Epic Olympics.  Who has a child on the brink of dying? Who is the most heroic mother? Who has the saddest story? Who has such good news that they can’t keep it to themselves?

I try to justify my snobbery.  A child with chronic lung failure has a father in the hotel room next to me who has the audacity to smoke in his room – 50 feet from the NICU ward.  I turn him in to hotel management, smugly.   That one has a child who was hit by a car riding their bike on a busy street without a helmet.  I would never allow my child to do that.  There are kids here in comas because their parents tried to beat the life out of them.  Bad parents, bad hygiene, bad grammar, bad manners.  I am different because, with Henry, I just had bad luck. 

So I want to believe.  I want to think I did everything right when I was pregnant as a diabetic woman.  But the doctors never say to Ned, “With your family history of cancer, there is a stronger incidence of heart defects.”  But several doctors have started their prognosis diatribes with, “In children of diabetic mothers…”  Then they say I shouldn’t blame myself.  I want to shove my insulin pump down their throats, show them all my blood sugar and ketone tests.  One doctor finally acknowledges they have no way of knowing whether my diabetes caused Henry’s malformed heart but it’s too late – the damage is already done.

7 June 2002

Happy birthday Henry, my rump roast, my chunky monkey, my beloved.  You’re a month old and have never been outside. Breathe unto me, breath of God.

10 June 2002

Surgery was supposed to happen today.  I slept for a few hours.  Painted my toenails at 4 am. Tried to gauge how this would turn out either way.  Last night a rumor circulated around the PICU that one of the heart babies had taken a grave turn.  I raced upstairs to make sure it was not Henry.  It was another baby, one who would need to take Henry’s surgery slot.   Again, I think who have I become that I am glad another mother is in a worse situation than I am? 

Dr. Baker comes by to assure us that we could not have found a more technically gifted surgeon than Dr.  Knott-Craig to work on Henry’s particular defect.   Nevertheless, she warned, Knott-Craig could only work with the heart, as it was, before him.  Or, to use her analogy, “it’s like giving Michelangelo crayons to work with.”  Good analogy, totally not comforting.

Some good news.  Malley is our new neighbor now that they moved us to the other side of the ward.  Malley had her aorta replaced but it doesn’t seem to have gone well.  Malley is 14 months old but just tiny, it seems hard to believe she weighs more than 15 pounds  -- although she has enough strength and verve to have pulled out her breathing tube.  Pattye, her mom, is a prosecutor and identifies the PICU cases up here that are the result of neglect and abuse.  I feel giddy.  I have a new girlfriend!  I have a new girlfriend in the crappiest place on earth!

Our other cubicle neighbor is Storm, a two year-old on a ventilator.  No one comes to visit him, ever.  The nurses are disgusted with how this child is being treated and eventually he is removed from life support and “allowed” to die.  I don’t know who made that call but the nurses can barely contain their disapproval when his mother shows up to reclaim his body.  She insists on taking Storm home in her car instead of paying for the ambulance.  I try not to demonize her.  I’ve done enough of that.  Maybe this was the one thing Storm’s mother could do for her child, wrap up his imperfect body she was never able to mend and bring him home.  Maybe she just had the bad luck of being so poor she couldn’t pay for an ambulance.

11 June 2002

Surgery cancelled again.  Disaster, resolution averted.  We didn’t even go back until about 4 pm and were told it would take five or six hours.

 About ninety minutes into surgery, Knott-Craig breezes out and my heart drops.  “Not to worry,” he insists, “Nothing wrong with your boy.  We’re just not going to do surgery today.”  Apparently, at the very last minute, with scalpel poised above Henry’s chest, a lab test was rushed into the OR showing Henry tested positive for staph.  Another damn infection, this one they suspect from the chest tube they put in after his second shunt.  Except, I count, that would have been a month ago.   Dr. Knott-Craig explains that these bacteria can remain dormant for a long time and then “suddenly flourish.”  Flourish is absolutely the wrong word.  We’re not talking about hydrangeas blooming out of Henry, we’re talking about a lethal wickedness manifesting inside my child.

In the end, they scrubbed out his wound in surgery and inserted a g-tube into his stomach so we don’t have to do nasal tube feedings anymore. 

Knott-Craig is a character, part soothsayer, part dictator.  More time, more faith and less forced feedings, he insists.  We must always have classical music playing for Henry he barks to the nurse.  I send my mother-in-law, classical music aficionado, to a music store to buy some CDs.  I once made the mistake of playing African lullabies thinking that Knott-Craig, our South African surgeon, would be pleased with my musical diversity.  Nope, he was horrified as if I were exposing my boy to Black Sabbath. He is willing to let Henry listen to Hildegard of Bingen chants, but only on a limited basis.  I cannot believe I am negotiating what my child, in a drug-induced coma, should be listening to.

Knott-Craig insists that we should be able to hold Henry even though I know this makes the nurses a nervous wreck.  He says Henry needs human touch, to be snuggled up with to accelerate his healing.  “And you must pray for your boy.”  I am stunned to hear a doctor urge me to route my faith in him through God.

My own sense of time is completely out of whack.  There is the infinite span of time waiting to hear from a doctor – this may be 20 minutes or two days, it doesn’t  matter – followed by another infinite span of time.  There are no schedules, no places I need to be.  Just hang out here with my kid in this PICU vortex, try not to let either one of us slip into the abyss.  My life is on hold, Henry’s has yet to begin.  I try to remember what I was doing before all this – struggling through statistics coursework, teaching a class, carpooling the kids.  None of it seems important now.  Now I just want this small miracle – fix his heart, it’s no bigger than his tiny fist.

A long time ago, when Henry was still in the NICU, Dr. Baker was explaining various procedures to us and decisions that would have to be made.  She concluded with, “But, ultimately, the responsibility for this child lies with me.”  I wasn’t angry, rather I laughed.  If she ever thought her years of training, her medical wizardry, made her ultimately responsible for this child’s life, then she must not know very much about mothers.  Henry is completely my responsibility.  The doctors’ job is to preserve his life, but mine is to protect the quality of that life.  And as each life-extending measure becomes increasingly heroic, the difference between preservation and protection becomes clearer.

Journal: Henry III

12 June 2002

A list of Henry’s wounds, bottom up:

14 June 2002

This is the world I live in.  Ned’s been sleeping at the Parent Hotel and I am covering days.  I needed to spend some more time with Gwyn and Ian.  I take Ian to preschool.  A Honda zips into the parking space next to me.  I watch the mother jump out and grab her toddler whom she has let stand in the front seat for the car ride.  I am so pissed.  Decapitated by the air bag.  Hurled through the front window in a 30 mph wreck.  Apparently this mother has not considered the multiple ways her child could die.

 We find out that Henry may be Protein C Deficient which means his blood clots too quickly (this would explain some of his surgical complications, especially the BT shunt they had to redo)..  I am delighted to hear that Ned has to go for a blood test because, pathetically, I want something else besides my own crappy womb and metabolism to be at fault here.  I have to go, too.

Blood tests come back.  Neither one of us have it.

15 June 2002

Early Saturday morning.  I drag the kids out of bed to meet Ned at the Parent’s Hospital.  Supposedly they are going to try extubation again.  Maybe the third time will be the charm. 

When I get there, Ned and I are combative, more with stony resentment than actual words.  I’m livid that his two days off this coming week will be consumed with him traveling for business. He should be here for Henry, for me.  His company should understand the crisis we’re in.  He’s pissed I can’t remember that we still need an income and, more importantly, insurance benefits.  Neither of us seem to notice Gwyn and Ian sitting in the hotel room , eating donuts and watching cartoons, waiting for their lives to resume.

 Later,,  Henry extubated..  But not doing well..

16 June 2002 – Father’s Day

Ned has had some sort of breakdown.  Or maybe it’s a breakthrough.  He’s been here in the PICU almost 36 hours. Slept in the recliner. Skipped out on almost all of work.  If they fired him now, I think part of him would be relieved.  There is something about this time, when we’re fighting for Henry to stay extubated, where Ned is panicking but is also bonding deeply with his boy.  Maybe, before, Ned’s focus had been on keeping me going and Gwyn and Ian on some sort of schooling/sleeping/feeding schedule.  Now that we can hold Henry, Ned sits in the rocker with him for hours.

 Yesterday he collapsed..  Very angry and weepy and not able to articulate what had set him off..  As is he needed to justify what was breaking him..  We’ve understand the cumulative effect of our enjoined lives to this point – burying my sister and then his father this past year, especially..  We knew only the two of us understood each other’s sadness..  We can be jackasses to one another when better, richer and healthier..  But, in the trenches, I am acutely aware of how much I love him.. 

 I’m learning how imprecise doctoring can be..  Each doctor has his own prognosis and treatment suggestions..  Clarke wants to reintubate this morning, Knott-Craig thinks that’s “foolishness.” He tinkers with Henry all day..  Are his wife and kids pissed that he is spending Father’s Day here or are they just resigned to the fact that his professional calling supersedes time with them??  Knott-Craig adjusts the bed temperature, when medicines are given and the angle of Henry’s neck under the oxygen hood. If we can get through today, he claims, “We’ll be home free.””  Of course, this is no way means we are heading home..  He pats my shoulder as he leaves, compliments me on our classical music choice for the day..  I realize I am desperate for him as a young girl craves her father’s attention..  My own father has not come to see Henry..  He tells me it is too much for him to witness after losing his other child.He tells me it is too much for him to witness after losing his other child.

 Some people think Henry will die, that sooner than later this mutilated heart will stop its sickly thumping..  Many of the doctors have no idea which way it will go, baffled by both his complications and resilience..  A few, namely Knott-Craig, believes Henry will eventually go home but that time is Henry’s best medicine..  That we must have more faith in Henry than we do in medical expertise..

19 June 2002

Malley went home yesterday.  And another PICU kid, Mason, is dying today.  Knott-Craig says we will be going home within a couple of weeks.  

Now, when I hold Henry, he looks like he might forgive me.  He goes after the pacifier with a voracity that makes me scared to nurse him.  I guess I need not worry about that since he will have the feeding tube for a while. I get to see his sweet round face without any tape or tubes. 

 The geneticist comes by today to tell us they cannot find anything on our DNA panel that would indicate our genes were the obvious cause of Henry’s heart defect.  They first met with us three days after my c-section. I remember sitting in a wheelchair next to Ned answering their long series of questions.   Yes, I had a mild heart murmur but we thought that was because I had scarlet fever as a young girl.  Yes there was heart disease on both sides of the family.  But the grandparents that claimed made lifestyle choices that complicated their heart health.  Was there Down’s Syndrome in our families, were either of us Sephardic Jews, had I taken meth when I was pregnant?  My favorite question, which the genetics team asked at least three times , was if Ned and I were cousins.  I am 5’11, olive skinned and pretty much look like a giraffe.  Ned is 5’8, pale skinned, Nordic blond and barrel chested.  Hell, we’re barely the same species.

Journal:  Henry IV

 June 2002

People say that when you go through something traumatic, you find out who your real friends are.  I knew no one wanted to see a baby like this, tied to machines, suffering.  Those who have come were brave.  They came to check on all of us.

 St. Paul’s clergy, every single one of them, came at some point to see Henry.  My father and oldest friend did not.  Mom would fly in and tend to both daughter and grandchildren. My grandmother and aunt brought meals, insisting I take better care of myself. My dissertation chair came to the PICU and prayed over Henry even though (or perhaps because) her own son had died in infancy. Martha, my mother-in-law, was my rock.  She basically moved to Oklahoma City.

 To be honest, I was grateful that some people stayed away.  What was I going to say as I paraded them past Henry?  They wanted to know if Henry was going to live and I didn’t have that answer.

  I keep expecting the moment to come when I’ll be consumed with rage.  Instead I just bleed out grief, expecting Ned to be there, stronger than me. I met friends in the waiting room and tried to give them the most upbeat news I could muster.  I kept my hotel room neater than my house had ever been.  I fussed for hours each day over Henry, learning how to suction him, bathe him while he was on the respirator, making sure his music was both intellectual and spiritual.  I learned when a wound was beginning to look infected, when a bad O2 rate was a real problem or just a poorly placed sensor.   I realized that my fat, punk-haired boy had horrible cardiac defects but that there was actually nothing wrong with his heart.

 During our last days at Children’s, Knott-Craig refused to let us go down to the general ward because he didn’t want Henry picking up an infection.  So he put us in an isolation room in the bone marrow unit.  It was a honeymoon with my kid.  We smiled and sang and Henry was utterly yummy. I tucked him in the baby sling and kept him on my body whenever I could. Maybe I thought I could somehow absorb him back into me and repair the damage I had wrought.

 I took Henry home on June 28^th, seven weeks after he was born.  It was a beautiful day where spring was just giving way to summer.  Ned was at work and we agreed that I would spring Henry from the hospital and he would meet us at the house with Gwyn and Ian.  Getting my child out of the hospital was akin to a military deployment.  I had the breast pump, portable oxygen, bouncy seat, stomach tube feeding equipment, luggage and all the gifts that had been brought to Henry while in the hospital. 

But I relished that it was just the two of us coming out into the world anew.  While I knew we had surgeries ahead of us, I convinced myself Henry was on a direct path to recovery.

I drove home, like all parents of newborns, at the breakneck speed of 13 mph.  When I arrived, I put Henry back in the sling and brought him into Gwyn and Ian who could hardly contain their excitement.  Everyone wanted to hold him and Gwyn insisted that her new brother’s wild hair was in need of some styling product.  Henry coped with the hoopla by sleeping through it all.

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