Enter The Deuce, Part IX

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I’ve been thinking about how I transitioned from foreswearing surgery to grudging consideration, to rational acknowledgement that surgery was the only reasonable option for the Deuce’s recovery. To anyone else, this may seem a relatively understandable transition, one that held no miracle epiphanies or hypocritical backtracking of attitude. I, however, have a fair memory for things my mouth issues. One of them recently has approached the speed of mantra: “As long as we avoid surgery, we’re good.”

I can willingly admit that I wanted to avoid surgery the way Grover Norquist wants to avoid new taxes. Surgery struck me as a concession. A concession of what is hard to say, but it indicated a larger failure of less-invasive therapies. It also meant that my son wasn’t quite as strong as I’d wanted to think. This was no minor flaw if surgery was the only solution.

The turning point, I realize, came during our consultation early in the week with the head of the NICU, the charge nurse, the social worker and the ombudsman. Sounds like the title of a French film, doesn’t it? During our meeting the doctor made a statement that I glossed over. I was too focused on getting the answers I wanted to really consider the implications of his statement.

But before I get to what he said, I’d like to discuss the word “imminent.” It’s a word that I’ve heard most often used by defense wonks and neocons. It’s the descriptor they attach to threats, dangers they want to act against. When someone calls something an “imminent threat,” what they are saying is that the boogeyman isn’t just around the corner, he’s turning the corner as we speak.

Imminent is a word that I would use to describe my understanding of my relationship to the earth in that nanosecond I had to consider my circumstances before faceplanting into the ground. There was no avoiding the soil, the gravel, the crash, my face pulverizing terra most firma and the planet returning the favor for my lower lip. Imminent.

The surgeon said, “I believe surgery is imminent.”

I was taking notes as he spoke and I touch-typed that statement into Microsoft Word and then hit return to catch the next significant thing he said. Judging from the open window, I typed more of what we were told, but that’s the only statement I recall from memory, the only one that required further reflection, the only one that forced a change in my views.

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In her introduction to the groundbreaking volume of poems “Live or Die” Anne Sexton compared the ever-shifting mood of her work to the jagged line of a “fever chart for a bad case of melancholy.” That image of a fever chart that has returned to me as I’ve tried to digest the Deuce’s turns in condition. There have been ups and downs in his path to proper development—I’m always cautioning myself against using words like “recovery” because it suggests he was once complete and whole and the challenge has been quite different. The issue for Matthew is just reaching proper health, attaining the biologic maturation of other babies that allows them to grow and flourish once leaving the womb.

Once we realized the Octreotide has ceased to work for him, taking him from the shallow end of a bell curve well into the meat of it, we understood that he wasn’t improving as we’d hoped, that the arrow of his development was pointing down, not up. While nothing had truly changed for him in those five minutes as the doctor explained his condition to us, our understanding changed and each of those changes in the arrow’s direction reflected changes in our understanding. His changes in condition unfolded on a much longer scale with turns too gradual to track from one hour to the next.

The Deuce was fortunate to sleep most of the day following the surgery. The general anesthesia he had been on was something from which he was weened very gradually. While I wanted to see my son’s eyes, to have that eye contact, I knew that more sleep following the surgery was good for him.

Boy, was I right. A day later, as he finally started to come out of the anesthesia, he was the most unhappy he’s been in his short life. To say I can imagine the pain he must have felt as he woke is to suggest I have powers of empathy that border on divine. I cannot begin to process how his inability to fathom the world around him was wrapped in such pain. I ached each time he woke and he cried out in pain until he began to cough. Of all the reactions he might have to his situation, coughing must surely have been among the worst possible, a kind of awful that soars somewhere above having a broken leg hit with a sledge hammer. Poor kid.

Fluid continued to dribble from his chest for another day. It wasn’t much but anything at all was sufficient to prevent me from relaxing. The biggest challenge came yesterday though: The Deuce’s doctors decided he had healed enough to try feeding him. It wasn’t a victory, but it was too significant a step not to be present.

Shana made it to the hospital in time to deliver the first feeding herself. Because of his chest tube, he’s unable to be held, so these initial feeding are from a bottle. Still, it’s not the TPN IV drip that he’s been on virtually since birth. TPN is Gatorade on steroids; it’s prepared to the individual patient’s needs to contain an optimal blend of carbs, protein, fat, electrolytes and more. However, it’s not a perfect instrument. The way the TPN dumps the fats and protein directly into the bloodstream is rough on the liver. Poor Matthew had been on the stuff so long they had begun to cycling the protein and fat out of the TPN for periods of six hours out of every 24 in order to give the liver a chance to rest some; it was effectively recovery between intervals. Sometimes I can’t not see the world in terms of the bicycle.

Feeding him his mother’s milk from a bottle was going to give him a chance to actually fill his belly, to know the payoff that comes from sucking on a nipple and to experience being sated. So far, he’d been sucking on a pacifier for hours each day with exactly zero dividend. It was a wonder he had continued to persist for all the benefit he had received.

His nurse began the process of thawing frozen milk and putting 10ml servings into bottles. These servings are so tiny the amounts of fluid my other son spills as he drinks something could dwarf what those bottles contained. Gradually, over the last day his serving size has increased, though, from 10 to 15 and now up to 30ml. In his mid-afternoon feeding I sat in terror, and I do mean terror, as he spit out the nipple repeatedly because his initial few sucks on the bottle resulted in such a flood of milk he gagged. It turns out our nurse had used a high-flow nipple on the bottle and the experience was so alarming to him I had to work for a half hour to convince him the same thing wasn’t going to happen again once the nipple was switched to a low-flow one. Poor kid must have thought he’d been fed a fire hose.

The reason feeding him mother’s milk is so important isn’t an issue of nutrition. It’s the crucial test for the surgery. I likened what the surgeon did to patching a hole in a roof. The TPN IV isn’t much of a challenge for the repair to deal with. It’s a brief drizzle to the newly patched roof. To find out if the repair is really going to take, what he needs to experience is a classic Deep South thunderstorm. He needs a biblical deluge while doctors sit under the ceiling with pans at the ready. To that end, his chest tube is still in place, but doctors have turned the suction off, to make him a bit more comfortable. It’s a nice step, but the fact the chest tube is still in place is our signal that we’re still watching and waiting to see if his thoracic duct can deal with the lipids (fats) in his mother’s milk.

This isn’t a live-fire exercise for a new soldier, this is the first patrol of Baghdad. And until the convoy is back in the compound we count off hours with no drainage the way I suspect soldiers count of kilometers completed. Each additional click is a bit closer to home, but you’re not safe until you’re home. Similarly, each new poop is a suggestion his system is doing what it needs to do.

Just how long this purgatory of watching and waiting will persist I have no idea. What I know is that I’ll persist in my devotion to being here. I want my wife to give him as many feedings as she wants and those that she can’t be around for, I’ll try to add in myself, but because of Philip, we can’t simply move here which means that most of the night feedings will be provided by his nurse.

That a nurse can report to me on his preferences and foibles carries the simultaneous pleasure of learning something new about my son, while adding the discomfiting realization that someone else is around him more than I am. It brings up all those dichotomies of blessing/curse, poison/cure.

It would be easy to overestimate his health based on the many metrics of his progress. He’s got fewer holes in him, fewer needles and tubes delivering into or transporting out of him medicines and waste. If nothing else, he’s more comfortable. That’s something, for sure. And there’s more of him as well; today he weighs 9 lbs., 12 oz. That’s more than two pounds up from his birth weight.

But this is a NICU. While I appreciate how everyone wants to project what my life will be like with the Deuce in our ideal future, a future where he’ll be an avid roadie with the willingness to let me suck his wheel—talk about idealized futures—this is the NICU. When Shana came downstairs to meet me and take Philip to his second park of the day, there were tears in her eyes and she told me not to go up yet. This is the NICU. Outcomes here are far from certain and today they lost a baby. It was born only yesterday and was admitted to the unit extremely hypotensive and showing signs of high acidosis. At a certain point the staff realized the baby was a lost cause and the entire extended family was admitted into the pod. Shana was with the Deuce as they wailed in the baby’s final hours. She left the Deuce’s side to give them the illusion of privacy.

This is the NICU. There will be no cheering until we get the kid in the door at home.

 

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28 comments

  1. Scott

    Two thoughts: Thank you for penning your thoughts; I am learning so much from your posts. I know the future is uncertain, but wish you peace on our journey

  2. David

    I have very few words Patrick. Know that you and Shana and Philip and Matthew are in the thoughts and prayers and best wishes of all those who read your words. Blessings to you all.

  3. Jeremy

    I am amazed every time you post at how precisely you resurrect what my wife and I felt almost 20 months ago. The feelings that you are experiencing (as well as the order) are identical to our experience, and I’m sure the experience of all NICU parents. If nothing else, know that you are not alone in the roller coaster that you are on right now.

    God speed.

  4. Dan R

    You should be encouraged by Matthew’s weight gain. I’m not a doctor, but as a father of three, I recognize that it represents a significant indicator of progress. Any parent would be happy with those numbers in a little over a month.

    Please know that you and your family are in our thoughts and prayers.

  5. Michael

    The thing I remember most from Zachary’s stay in the NICU was all the tubes that went in him. Each time a tube came out the whole world felt a little better. And those 10mL… 30mL… before you know it, 180mL feeds, they grow so fast, I measured their growth by how big the bottle was. Anyway our boys were still using low flow nipples when the car seats went from rear to forward facing, those high flow nipples, well maybe different babies.

    On a related note, I don’t know if this is only a Canadian thing, but there are rooms in hospitals called care by parent. Basically down the hall from the NICU, you get a bed, private bath and you can lock the door from the inside, so you won’t be disturbed. If Philip’s school is far away that might not work, but it might be worth asking about.

  6. Steve

    While it has been said many times, “Thank you for sharing…” is worth repeating. The multitude of RKP readers likely span the political, religious and philosophical spectrum from conservative to liberal and even beyond on both sides. Our opinions may differ (your mention of Grover Norquist almost brought a snarly to my face), our notions of spirituality likely range from zealot to atheist to agnostic, yet these seemingly large differences are dwarfed by our humanity and deep compassion for you and your family during such a difficult time.

    The struggling of a life that is so pure and new against obstacles that seem almost abstract, yet are so completely real touches us all. It brings out the best in us as we see that caring for each other when everything goes sideways is really more important than just about anything else. We are more quick to forgive short-comings because we are more aware of the strain and extra load that a fellow human must bear.

    By sharing this experience, you remind us all that our humanity and compassion are the most important things we have in common. Thanks again for sharing.

  7. Boy_Howdy

    As a father, that picture really gets to me.

    I appreciate you sharing this with us, and hope you realize that there are many people (some, mostly lurkers like me) silently pulling for you.

  8. P Poppenjay

    In reading this, I thought that your heart must feel like an open wound. Your honesty and your courage (which Hemingway defined as grace under pressure)are clearly evident. But don’t stop the tears when they come to call. They are cleansing and needed.
    My prayers remain with each of you.
    Today’s photo is worth a billion words.

  9. P Poppenjay

    Permit me, if you will, to change my last sentence to a quote from you. Your quote owns far greater power and grace.

    “Where do I need to be right now? With my son.”

    You said it.

    The photo is witness to it.

  10. Stacy

    I am cheering. Cheering because you are a great father and Matthew is lucky to have you both.We will all shout for joy when you finally get to hold him. I have been an OR nurse for 26 yrs, your posts have taught me a great deal. Thank you.

  11. Hautacam

    That photo speaks volumes. And such a hopeful but bittersweet story to go with it. Thank you. To write so well in a time of such personal stress is the hallmark of greatness.

    Just one question: Why is Greg LeMond giving the Deuce a bottle? And when did he (Greg) get skinny again?

    Sorry, couldn’t help myself.

  12. Jeremiah

    Absolutely LOVE that photo. And I agree, does kinda look like LeMond! Hope today is another productive & positive day and a step in the right direction.

  13. Marc

    I have two healthy and growing young boys at home and I am grateful for it each day. By having a child in danger you are living through the most terrifying experience I, or any parent, can imagine. If the wishes of strangers can carry any weight, I am wishing you continued strength and the joy of taking your child home.

  14. Catherine Page

    Patrick – this is the best entry yet in this saga – we are up, we are down, we are up, we are down… I know, in my mind, that it is too soon to say Yipee, but my heart is whispering it (so the gods of the chyloeffusion don’t over-hear).

  15. Craig S

    Patrick, I am a regular visitor to this site, but a first time commenter.
    I have been following story and am glad that Matthew is making a turn for the better. As a father of a 6 week old, I could not imagine going through what you and your wife have gone through.
    Best of luck to you and yours.

  16. grumbly oldguy

    We often feel we are all alone, and that the peloton has sped ahead, sometimes the gruppeto has passed us by too, but we are always surrounding each other emotionally. We watch out for each other because we are linked by emotional and psychological bonds that hold the group together. All of us are up, then down… Eat dessert first, life is uncertain…

  17. Julian Franco

    Hi there, I’ve been following your story for a bit. My second son was born at 26 weeks in September of 2011. He spent 92 days in the NICU. It was a long three months and it’s been a tough 15 months since then.

    The ups and downs of the NICU, and for a while after, are truly a roller coaster. My thoughts and prayers are with you and your family. I hope he gets to go home soon.

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