Thanksgiving

Thursday morning we arrived at the hospital to find my dad, wearing a hat designed to resemble a giant turkey, already holding Truman. Truman looked like he was loving it. He hasn't yet been taught to run from strangers with poultry-shaped headgear, so his seeming serenity was excusable. We spent the morning with Tru.

Braving horrid Thanksgiving day traffic, C, her parents, my dad and I drove to Connecticut to spend the day at my parents' house. For many people, faith or close friends may be the best means of assuaging sorrow; for me, there is no substitute for family.

We drove up to the house to find my brother, an investment analyst, dressed in a head-to-toe turkey costume. He was chasing our dog, Duma, through the glut of parked cars in our driveway. Duma is named after the home city (in the Philippines) of our Nana, who greeted us in the doorway. If you have never met Nana, you will not understand the role she plays in our family. While my parents worked full-time, Nana bathed us, fed us, disciplined us, advised us, listened to us, drove us to practices, and endured our incessant complaining and bickering. In our family, there is a third parent beyond mom and dad, and she's it.

Behind Nana stood my mom, furiously pulverizing vegetables in preparation for the feast that was about to begin. There were 15 guests for Thanksgiving, and mom and Nana had, as always, overprepared. After the 15 of us had gobbled our way through the turkey, lasagna, beet and frisee salad, purple potatoes, linguine with brussel sprouts, arborio rice, broccolini, latkes with caviar, stuffing, cranberry sauce, guacamole with pomegranate seeds and pineapple, and on and on, there was still enough food left standing to feed my parents for weeks. For my mom, who loves to entertain, to cook for 15 people is to cook for hardly anyone at all. My mother is a unique person, so far as my experience is concerned: since I was a child, my mom has been calling me "asshole" as a term of endearment. She would drive from Connecticut to New York to do my laundry when I was in college (yes, I am ashamed to admit it). She calls Truman "Trumanity". She wants to be called "Umama" and not "Grandma".

The vitality (some might say insanity) that is alive in my mom has its most obvious descendant in my sister who, along with her boyfriend, designed the pins at the top of this post to honor Fisher at his memorial. At that memorial, where the better part of the attendees wore suits and dresses, my brother wore a leather jacket and jeans, while my sister wore a powder blue mechanic's jumpsuit with a rendition of a wolf howling at full moon obscured by clouds on the back. That design was entirely rendered in sequins.

My brother and I spent hours (rudely?) ignoring the crowd downstairs while we engaged in the ageless tradition of sparring over hockey video games and verbally bludgeoning each other. C, her parents, my sister and my dad sneaked away to toss a rubber football in the backyard. Her parents, my new family, are cut from such a different material than my family that one might never expect the two groups to mesh. C's family is sturdy, respectful, polite, faithful, and awesome, where mine is frenetic, tactless, rambunctious, secular, and awesome. Nevertheless, the two families have merged beautifully. C's dad led us in prayer before the meal.

We were joined by my mother's sister and her husband, and the family of one of my father's colleagues. Incidentally, my father's friend has acted as a sommelier of sorts for several large gatherings. His wine collection is dear enough to him that it is currently housed in a former nuclear bomb shelter.

After dinner, C's family and I drove back to the city to be with Tru. He seems to be recovering (he had a rather large poop...we celebrate such things) and we pray for his continued improvement.

Fisher's preliminary autopsy results have returned and have, unfortunately, not yielded much new information. We wait for further results.

I spoke at some length with a good friend of mine this morning at 10. The kindness of our friends is profound. As unlucky as we may have been, we are lucky still. I spent the hour before I began writing this holding my son. So much to be thankful for.

Love to you and yours.

Thank you Dan, Barb, Amy, Lyla, Maya, Ben, Jac, Zamboni!, Bob, Tara, Colleen, Alice, Theresa, and Rizza. More thanks to come. Much more.

Monday

Yesterday we held a small ceremony to remember our boy Fisher. It surely seems unlikely, or even inappropriate to those unfamiliar with our exceptional family and friends, but amidst the tears and grief we found moments of laughter, even joy. It was surreal but lovely. We are nearly obliterated by the kindness of those close to us.

Truman continues to recover. His most recent x-ray showed a normal intestine., so doctors will discontinue further x-rays until Tru presents them with a reason to start again. We pray that no such reason ever appears. Our anxiety is unremitting. His present course of action is as follows:

1. More antibiotics for the next 3 days (10 days total)
2. No feedings by mouth (intravenous TPN only) for the following 4 days (14 days total)
3. Upper Gastro-Intestinal Tract X-Ray to determine whether intestinal tract is functioning correctly
4. Feedings begin
   

Tru will be in the hospital for at least another month. His current intravenous nutrition is administered via PICC (Peripherally-Inserted Central Catheter) line in his scalp. A PICC line eliminates the need for more superficial IV lines, which must be replaced frequently. These frequent replacements are annoying to the baby and come with a higher risk of infection. The first time we tried to have a PICC line inserted (Friday), a medical fellow tried to insert it in Tru's leg, with little success. Tru didn't much care for the procedure, thrashing about constantly while the poor woman tried and failed. When we were told that the line would have to be re-inserted the next day, we asked if someone more senior might attempt the procedure instead.

Enter Dr. Wong.

Dr. Wong (first name unknown) appears approximately 80 years old and walks with the slow uncertain gait of a homeless man. We'd seen him wandering the halls of the hospital and had assumed that he was a either a member of the sanitation staff or kindly older gentleman who had lost his way. He is neither. Dr. Wong was among the original proponents of CPAP and is known lovingly by the nurses as "sensei." He came to examine Truman, who did not so much as whimper while Wong searched his body for the best insertion point. "In the scalp," he said, then motioned for us to leave. 15 minutes later, Truman was good to go. As anyone who knows me is aware, I cannot resist the opportunity to over-praise the expertise of an Asian. Bravo, Wong.

As it happens, Dr. Wong was also by Fisher's side for hours on the last day of Fish's life, helping to adjust the peripheral IVs that administered his transfusions and pain meds. It was, perhaps, his sympathy for our loss that led to him to perform a procedure well below his level of competence for Fisher's brother. Again, thank you, Fisher.

Much love to all of you, who keep our heads just above the water. To Ed, J-Rob, Freedman, Socci, Gus, Arun, Sarah, Laura, Ashley, Claudia, Chuck, Kathleen, Rose, Alison, Fran and everyone at AT, sorry I left you off the last list of gratitude. I'm sure I owe a hundred more thanks than I can currently remember. We're trying to return emails and texts and phone calls, but because of your overwhelming kindness, it's taking us some time.

Thank you.

Time

Today was Friday. Truman is getting better, apparently. We've reached a state of constant emotional vigilance, so the news that he is healing is treated with some skepticism. Still, x-rays continue to improve, his skin color is better, his belly is less distended, he's urinating and stooling more, and so on. The current plan is to treat him with antibiotics for 2 weeks (no feeding during that time), give him a full medical evaluation, then to start feeding him very slowly. We thought he'd be home last week, but he won't be home until at least Christmas. He's worth the wait.

An autopsy was performed on Fisher, though we won't have results for several days. We hope that the autopsy will illuminate any anatomical issues that the boys may share. Another way in which Fisher is helping his brother survive.

We spent the early evening at a funeral home in Inwood, relatively close to the hospital. We were met at the door by a huge Italian man named Jimmy. He was about forty-five, 260 pounds, and wore khaki pants, a gray sweater vest, and a chambray shirt tucked in on the left side but not on the right. He looked like a tipsy, gay, off-duty Santa Claus. He stood hands-folded at the door and said that he was pleased to meet us and that we should wait for Ralph. Ralph (his brother) emerged shortly, wearing a suit. He led us to a consultation room in the back. We talked for nearly an hour about funeral arrangements for Fisher, who would have laughed his ass off at the whole situation.

Then, in a page from a script of the story of someone else's life, I paid for my son's funeral.

There will be a small ceremony this weekend, when a very few of us will gather to remember our boy. Ralph and Jimmy, in spite of the pains I've taken to mock them, were kind and sympathetic without dragging out the potentially maudlin aspects of the arrangements. We like them.

I talk to Fisher all day long. When I see something odd that makes me smile (one of the Children's Hospital's benefactors is someone called "Daniel Placentra"), I say "Thanks, Fish." When it takes me too long to park, I say "Sorry, Fish." And if you were to say that I must be losing my mind, I could hardly argue with you. I don't believe that he hovers over me constantly; but the thought of him lives in me so vividly that I can address that part of myself directly. I know I am talking to myself, but this mild illogic brings me a great measure of comfort.

The deluge of generosity that continues to fall on us has been humbling. My work, our families, our friends and neighbors have been inordinately thoughtful. Our doormen have ordered flowers for us. We are lucky to know great people.

At the funeral, there will be 'memory cards' (really cheesy idea?) for the few who attend. The front of the card will have a picture of him (We have so few pictures. Just writing that sentence puts a heavy weight on me.), and the back will have the following words:

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Fisher Daniel Kayne

Fish,

Today the neighbors brought us food. The doorman ordered flowers for us. Your dad's co-workers offered to do his work for him. Your dad's family drove in from all around. Your mom's family flew in from Indiana. The neighbors brought more food. Friends wrote us letters and tried to help us out. This world is like that. People are good and kind and decent.

You live in our hearts, Fish, as silly as it sounds. When we walk through this good world, you walk with us. Thank you for being our son. We love you.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

C and I still have spells of dumbstruck grief. I should have noticed this, or I should have told him this, or I could have done this differently. He will never choose a shower instead of a bath. He will never be scared to go on a date. No Thanksgivings or Christmases or Hanukkahs (if he had wanted to convert, that would have been fine). But little by little by very little, we find ways to celebrate the boy he was becoming. He was, though little, his big brother's patron saint. When C held them both on her bare chest, it was Fisher who reached out and held his big brother's hand. I know it may mean nothing, I but I believe it meant everything. He was a feisty son-of-a-gun who had his brother's back. We love him.

Thank you to everyone. To Dr. Tom, Dr. Wiseman, Angela, Dr. Ratner, Dr. Wong, Pat, Erin, Maria Beltran, Maria "the fellow", Kevin, Erin, Keith, Stacey, Chris, Michelle, Pablo, Elena, James, Lennon, Eliza, Dreadnought, Mika, Lani, Sam, Hayden, Christy, Dana, Jordan, Todd, Liz, Maggie, Sarah, Goode, Casey, Berg, Dana, Taylor, our families, and everyone. I know I left out a thousand people. These are just the names of the first 40 or so that I can remember. If I weren't falling asleep as I type, I would keep going. We apologize to anyone left off this list; I can assure you that our gratitude is profound, even if our memory is hazy.

Much much love to you, you kind and thoughtful people.

Going on ahead...

At around 4 pm today, the oxygenation of Fisher's blood fell abruptly to nearly zero percent. Shortly thereafter, in the arms of his mother, Fisher Daniel Kayne passed away, one month and three days into what had been a very trying life.

From the moment of his conception to the moment of his passing, Fish had to fight for everything. We take some measure of solace knowing that he suffers no more.

We held him for over an hour after the battle for life had been lost. The doctors assured us that he was not in pain. Our families were there at our sides. Our son was surrounded by people who love him.

We've spent the last two days at the hospital, with doctors and nurses (even nurses we don't remember) approaching us to express their condolences. Many of them wept. Their shock only reinforces the feeling that Fisher's death was virtually unforeseeable until the damage had already been done.

We already own a twin stroller. We tell people that we're going to the hospital to visit "the guys." Stupid little thoughts like these run through our minds.

Truman is still unwell, but continues to improve. We're doing what we can to retain some sanity with regard to his care. Every little blip gets our radars screaming. Knowing now that a perfectly healthy baby can suddenly suffer horribly, there's not much hope for peace of mind.

We will miss you, Fisher Daniel Kayne, king of brooklyn and prince of our hearts. Rest now.

More later. Sorry to be so inarticulate and abrupt, but we're operating on no sleep.

Much love to you and thanks for your support.

Out of nowhere...

After an amazing evening with family and friends on Monday, C and I went home and called the NICU to check in on our boys. It was 12:30 am on Tuesday. The nurse said Fisher was ready to move from his incubator to an open bed and that Truman had tolerated his feeds and was doing well. We went to sleep with smiles on our faces.

Monday morning at 8, Dr. Diacovo, the attending neo-natologist phoned to tell us that Fisher had, overnight, fallen ill. We sped to the hospital.

Fisher presented with a series of very troubling symptoms. He was pale (usually pink), limp (his arms and legs would fall freely when released), and x-rays showed that his distended belly was at least partially a result of 'free air'. Free air is a sign that his tissue in his bowel has died and the bowel itself has perforated. The perforation releases air into the body, but along with the air, things that should normally be expelled through the rectum can leak into his abdomen and send him into septic shock. The perforation, which was the root of the problem, becomes secondary to the overwhelming shock that the baby's body undergoes. All of these things have happened to our boy.

The remedy, if there is to be any, is surgical intervention to remove the portion of the bowel that has died. We were forewarned that this intervention would not necessarily cure him; his situation may be unsustainable and incurable. The bowel may be either completely dead or such a large percentage of it may be dead that his intestinal tract becomes, as the doctor said, "incompatible with life." Somehow, the euphemisms that are intended to mollify are instead staggering.

The surgeon, Angela (whose last name is some beautiful hyphenate that I can never recall), explained that their best guess at a diagnosis, pre-operation, was necrotizing enterocolitis, or NEC (http://kidshealth.org/parent/medical/digestive/nec.html). It is a disease of unknown causes, one that devastates the bowel and kills the intestinal tissue. Her other guess was a disease called PUSI. I don't remember what it stands for, but the acronym was enough to force C and me to suppress a sophomoric smile.

Surgery revealed a different diagnosis. Fisher had a volvulus, a twisting of the intestine and the attached blood vessels. As a result of this twisting, blood supply to the bowel is completely cut-off. The "insulted" bowel was removed and marginal bowel was left in the hope that it would recuperate. His wound was left open so that doctors could have easy access for a 2nd surgery, to be performed when Fisher is stable enough to undergo anesthesia. He is hooked up to a ventilator, he has blood transfusions coming in from several different lines, he is on epinephrine, he is swollen nearly beyond recognition, but you can see his little body struggle to survive.

The prognosis is not good. The doctors (who have been beyond respectful, competent and patient) have begun, consciously or not, to change their language from "the surgeons are going to..." to "the surgeons are willing to...", an indication that they will perform further surgeries in spite of their lack of faith in Fisher's ability to recover. Through his open wound, they can see some of his remaining bowel, and it appears dead and black. If his intestines do not recover, he will not live. Though some signs improve, those signs are so superficial that the doctors are not convinced that he'll make it. We're having conversations about "if he survives" and "quality of life." Less than two days ago, we were talking about taking him home. Now we're plummeting through worse and worse scenarios. It should not surprise us that the forces of the universe, if such things exist, do not give us a second to catch our collective breath, but we are nonetheless surprised.

Fisher's sudden illness led doctors to examine Truman, just in case he might have something similar going on. In a horrible twist, he too had become unwell. His illness, however, has been intercepted at a much earlier stage, so he's been treated with antibiotics and a blood transfusion and appears to be recovering. It may be the case that, without Fisher's illness, we would never have examined Truman so closely and he too would have become extremely ill. Fisher's illness may have saved his brother's life. Truman is back on CPAP (breathing help), has an IV, is in an isolette, but he's kicking and crying and pooping. Still, hooked up to all that stuff, it's hard not to think that we're back at square one.

And now, we wait. C's mom is here and her dad and sister will fly in tonight. My whole family came by last night and will return today. The doctors and nurses have been unbelievably kind, coming into our room and consoling us, even crying with us. The kindness that we show each other is one of the few things that keeps this waking nightmare from overtaking us. We are loved so well, and we love our sons.

Before Fisher went in for surgery, we had him baptized. A friend of mine once said that though he was unsure of god, he had learned to believe in prayer. Now I know what he means.

I have never before felt actual grief. There are times I cannot bring myself to stand or speak. I have the most amazing wife, and I thank God for her.

Thank you for your thoughts and prayers. My wife, our parents, our siblings and our sons thank you. You pick us up and help us pick one another up.

Much love to you.

19 Days...

The dudes are still in the NICU, but getting better everyday. At the same time, everyday is fraught with the angst of monitoring the doodads and thingamajigs that they're attached to, which I suppose will eventually pale in comparison to the anxiety of the actual parenting that we'll have to do when they're released. They've both been moved from the more intensive NICU to the 'feeders and growers' NICU. One step closer to coming home...

Truman (or Tru, as he is known on the street) has been breathing unassisted for several days. He hit a speed bump with his feedings over a week ago, when vitamin fortifiers were added to his feedings. Lots of spitting up. Now, instead of giving him the vitamins and the breastmilk separately, the nurses mix them together and he takes it down fine. He has a very sophisticated palette.

Fisher (aka Fish, according to the paparazzi) was first to breathe unassisted, but was perhaps given that privilege a bit early. He became a little exhausted, then had to be put back on CPAP (the breathing machine....here's a Wikipedia link that makes it look much scarier than it actually is: http://en.wikipedia.org/wiki/Positive_airway_pressure) for a couple of days. He's been coming off for hours at a time now. Unfortunately, the CPAP can accidentally force oxygen into the baby's stomach, making him uncomfortable and constipated. When he finally was able to poo, C and I shared a high-five. Simple pleasures.

In addition, C and I (C much more often than I) have been practicing kangaroo care, when babies are held against their parents' bare chests, helping to regulate temperature and breathing. It's a pretty awe-inspiring interaction, one that helps to explain all the smug, pretentious things parents say...you know, things like "it's awe-inspiring." Needless to say, the first time I practiced this venerable, soul-touching ritual, Tru peed on me and Fish puked on me. They're much more respectful of their mother.

Yesterday, Tru bottle-fed for the first time. Fish came off CPAP for the first time in a couple of days. From time to time, we have little scares (that hardly seem little in the moment), but the general trend is positive.

Thank you all for your support and interest. Much love and gratitude.