Saturday after his 2pm feeding, Truman Richard Kayne was released from the hospital. In order to gain admission to the hospital, I was given a Parent Pass, which I've been wearing on a lanyard around my neck. It was issued on 10/15 and expired on 11/17, the day Fisher became ill. On 12/12, wearing our expired passes, C and I drove the little man home.
Last night, much like the night before, was mostly sleepless. We checked him constantly while he slept, and while he was awake we tended to his every whim. It was exhausting and exhilarating. The picture on the right was taken by me during the 8 AM feeding/burping/changing/playing shift. The duck he's eating has a pacifier affixed to its beak, so he's chomping it hardcore. WATCH OUT DUCKS.
And now, we hope, the regular craziness of parenting awaits us. Of course, we fuss when he fusses and sweat when he cries...any sign of illness ramps up our heart rates. But so far, so good.
A few other notes:
Today, my family came by. My dad wore a hat shaped like a flower pot. My mom brought mirrors and lamps for the apartment. My sister wants Truman to call her "uncle". My brother cackled while Truman peed all over the changing table.
My grandmother, Truman's great-grandmother (aka "Excellent Grandmother") has been sending us letters and emails and we haven't had the time to respond to them yet. If you're reading, Grandma, we love you and miss you and thank you.
Our friends Goode and Tay (nicknames) dropped by the hospital on Friday. Goode gave C a necklace shaped like a fish with Fisher's birthstone attached. C adores it. I doubt she'll ever take it off.
On the way home from the hospital, we stopped by the Riverdale funeral home to pick up Fisher's remains. Of course, we cried. There is a tendency, everyday, to regret every moment of joy; how dare we feel happiness when Fisher is gone? And then the sadness washes over us. But now Truman cries and our thoughts snap back to the present. We have each other and work to do. We are so lucky.
We've met so many people throughout this ordeal, other fathers and mothers who've helped us to stay strong, all the while enduring their own struggles. Much love to Tova, Keri, Norman, Eric, Jody, Julie, Anthony, Lashanda and all of the NICU parents and their families.
Thank you all for your concern and care. Not sure when the next post will be written.
As I write this post at 9:19 AM, I am sitting in Columbia-Presbyterian Hospital's "Launchpad Suite". The room is essentially a practice facility for parents who are getting ready to take their children home. Truman is next to me in his crib, gurgling and fidgeting (having recently discontinued screaming and thrashing). C is sound asleep, having worked the 5 AM feeding shift. We have spent the last 15 hours parenting. So far, so good, unless you like sleep, in which case this whole parenting thing may not be for you.
In a few hours, pending a check-up, we're taking our son home! It's enough to make me appreciate the un-ironic use of the exclamation point. Ok, it's more than enough.
So much has happened since the last post. I'll try to be chronological, but the days roll into one:
On Tuesday, we got a new doctor, Richard Polin, Director of the Neonatal Division. Upon first sight of Truman, he advised that we speed up the feeds and anticipate taking him home soon. "Your son is a well baby." Wow. Once we reached full feeds, it was only a matter of time before we left the hospital. The commingling of elation and anxiety was remarkable. Getting out of Columbia was our long-awaited dream, but suddenly realizing that the trained professionals would disappear to be replaced by the two of us was not a reassuring thought. Deep breathing and pep talks filled the rest of our day.
Wednesday, C headed to the Medical Records Department of the hospital to retrieve the records from the early morning of 11/17, when Fisher fell ill. We had begun to harbor thoughts of incompetence and negligence on the part of the hospital (see our last post) during the onset of Fisher's illness, and those thoughts were intolerable. On her way, C ran into Dr. Diacovo who was already in the process of gathering the records to review them with us. It comforted us both to know that he anticipated our needs in this regard.
(Briefly, let me say that Dr. Diacovo has been the model of grace, compassion, and excellence throughout the ordeals we've experienced here. While every individual we've encountered has been competent and kind, Thomas Diacovo has distinguished himself as a singular force in the recovery of Truman and in the efforts to save Fisher. He is a credit to his hospital, his profession and himself.)
Our meeting with Diacovo was lengthy and detailed. He took us through the entire week before Fisher's passing, guiding us through the abbreviations and diagnoses of the notes taken by several nurses and doctors. In short, the notes give an impression of precise and excellent care throughout the evening. The first sign of his illness was 9 milliliters of breastmilk that he had failed to digest (at the time, he was feeding by a tube through which undigested milk could be easily detected). Though 9 mls (or 1/4th) of his feed was no cause for significant alarm, the nurse called the nurse practitioner. The nurse practitioner called the medical fellow. Subsequent examinations revealed that Fish hadn't digested any of his next feed. Feedings were stopped as a precaution. X-rays were taken. The x-rays, which were ultimately shown to us by Diacovo, did not show a critically ill baby. His stomach was distended, but the pictures showed what looked like gas.
Truman's x-rays, on the other hand, showed what Diacovo called "frank NEC". We could see bubbling in the intestine (pneumatosis) and dilated loops. Fisher's films showed no such bubbling. In retrospect, Fisher never exhibited clear signs of NEC, even after he passed. Necrotizing enterocolitis may have played no role. Doctors had no way of anticipating the twisting of his bowel (volvulus) that took his life. But they took every step to save him. Our thanks to them, yet again.
I think the term that some would apply to our meeting with Diacovo is "closure". I think that term is appropriate, but only somewhat. In so far as we wondered whether or not our boy received proper care, the matter is indeed closed; in every other way, Fish remains open to us, sometimes sadly, sometimes joyfully.
Wednesday night, we had the good fortune of having Dr. Alisa Baer help us to install our car seat. She's an actual expert on the subject (http://www.thecarseatlady.com/about_us/about_us.html), and offered to teach us how to install it for free. Dr. Baer is not a very tall woman, and watching her stand in the back seat of our Grand Am, then put both feet in the center of our car seat as she tightened the seatbelt was a bit like watching Parking Lot Cirque du Soleil. Our efforts to replicate her expertise fell somewhat sort, so she made the final adjustments and sent us on our way. Thanks to Dr. Baer.
Thursday and Friday were uneventful. Dr. Diacovo stopped by again on Friday, even though he's no longer technically our doctor (yes, I am becoming obsessed with him...I've stopped just short of absentmindedly scribbling his name repeatedly alongside pink hearts). He wished us well.
Sandra has been our day nurse for the last few days, and she was also Fisher's nurse for the first several hours post-operation. She's another example of true greatness. So too are Maria, Alice, Monika, Janet, Lorraine, and all of the nurses who helped our boys.
Today, we're supposed to leave the hospital. In a few hours, doctors will determine if it's safe to let us loose, then we leave Columbia with one boy in our arms and one boy in our hearts.
Lots to cover since the last post. The short story: Truman is doing well.
The long story (if math makes you queasy, skip to the asterisk*):
Last Wednesday, we were pleasantly surprised to find that Tru's feeds were being increased by 6 ccs per feed. Thursday morning, Dr. Diacovo explained that the resident who had transcribed the order had messed it up, leading to a much faster increase than Diacovo would have preferred. Truman did not respond adversely to the feeds (in fact, he appeared to love them), but the idea that Diacovo's plan of treatment was not being followed was utterly unacceptable. Diacovo assured us that he would restructure the way in which the orders were written, thereby avoiding the possibility of any ambiguity in the orders as they were delivered to the nurses. The formula by which the daily intake of breastmilk would be calculated would be the following:
((previous day's total feeding) + 20 ccs/1 kg/1 day)/8 feedings daily= amount to be administered at each feeding today
Truman currently weighs just over 3 kg. For the math-phobic, that means that every day his feeding should increase by 60 ccs. Those additional 60 ccs should be distributed evenly among his 8 feeds, resulting in a 7.5 cc increase per feed, per day. Because it's difficult to measure 7.5 ccs by sight, we would round up to 8 ccs.
*In other words, if every feed yesterday measured 18 ccs, every feed today should measure 26 ccs, then every feed tomorrow should measure 34 ccs, etc.
And so it was on Thursday (18 ccs at every feeding) and Friday (26 ccs at every feeding). Dr. Diacovo doesn't work on the weekend. Saturday, Truman's feeds increased to only 27 ccs at every feeding. We didn't catch the change in plan until we called at night to check up on him. Finding out that the plan had again veered from Diacovo's recommendation nudged us from concerned to irritated.
I called to speak to the medical fellow to ask why Truman's plan had been changed. Three things happened during this conversation that made me angry:
The fellow said that the attending neo-natologist (not Diacovo on the weekend) had not seen any reason to alter Truman's care. Instead, the attending assumed that she was, in fact, complying with Diacovo's plan of treatment. (How is that possible? Were Diacovo's notes written in hieroglyphics? How could his plan have been misinterpreted?)
The fellow spent some time trying to convince me that I misunderstood the formula by which Truman's feedings were to be calculated. She then spent several quiet moments stabbing away at a calculator only to arrive at the same numerical conclusion that I had already reached. In another arena, I might have felt some satisfaction at her transparent humiliation. However, when she's embarrassed about not being able to figure out the proper treatment for my son, it's not satisfaction that I feel.
The fellow said "I can ask the attending to consider increasing the feeds, if that's what you'd like." No, that's not what I'd like. I'm not the doctor. I don't want to come up with plans for his treatment. I don't want to call up in the evening and say "what if we fed him Mallomars?" and have you say "Great, I'll ask the attending." What I'd like is to have my son's care determined by the doctor who knows him best. If there is to be any deviation from that doctor's plan, I want to know why. That is what I would like.
Well, the next morning (Sunday) we arrived to find that Tru was still at 27 ccs per feed. The team of doctors on rounds saved us for last so that they could spend more time with us. We were not satisfied with their response, which included such equivocations as "...I wouldn't call it as mistake, exactly...."
Needless to say, Truman was put back onto Diacovo's plan. We moved from 27 to 35 on Sunday. Today we're at 43.
This morning Diacovo came to see us immediately after we arrived at the hospital. He apologized profusely for the miscommunications. Apparently, the Saturday attending thought Diacovo was being too aggressive with Tru's feeds and opted to slow them down. It was something of a relief to find that the alteration in the plan was not the result of a miscommunication between the caregivers, but instead a result of another doctor's more conservative approach. Does it excuse changing Truman's care without notifying us? Absolutely not.
An underlying problem here is the continuity of care when doctors and nurses hand off Truman to one another. Every doctor we've met has been kind, competent, and responsive. But none of them appears to have the long view of our son's care. Diacovo is off the floor as of tomorrow. We switch to a new doctor. The speed bumps that may result from that transfer are no longer tolerable. The way that C and I are able to sleep at night is by believing that we have taken our boys to the best hospital and given them the best opportunity to thrive. Emotionally, we can not afford to have that belief shaken.
Here is the thought that haunts us now: if this circus surrounds something as simple as feeding, what mistakes and ambiguities may have contributed to Fisher's illness the night he got sick?
The process has taught us to be fierce advocates for Truman's health. We no longer assume that information from one caregiver is communicated adequately to the next caregiver. The problem is systemic: while each doctor is excellent, we have literally no confidence that they operate as a cohesive unit and not as lone caregivers starting from scratch whenever they are presented with a new patient. The realization is disquieting, but also empowering. We are Truman's parents; the doctors are just the doctors.
Yesterday was Truman and Fisher's due date. We love them immensely. Happy birthday, boys.
So much other stuff to write about, but this is already a mammoth post. I'll write more later.
Last night, during our pre-feeding ritual of checking Truman's temperature and changing his diaper, we noticed that he was retracting while he was breathing. Retraction is the increased use of chest muscles while breathing, evidenced by the visibility of his ribs while his chest heaves as he inhales. Sounds worse than it is, but we were nervous. When the doctor (a medical fellow) came to examine him, he got the hiccups, which only make the retractions seem more pronounced. Though retractions, a sign of respiratory strain, are rarely related to feedings, the fellow suggested that we skip the 8 o'clock feeding in the name of extra caution. We skipped it. After an hour of kangaroo care, Tru's breathing became less labored (the retractions stopped) and he recommenced feeding at 11 pm. Crisis averted.
This morning, we arrived and went to change his diaper. Tru has always had slow motility (difficulty pooping) and doctors have assured us that this problem is common among preemies, who have under-developed intestines. To encourage his bowel movements, Tru sometimes receives anal suppositories and 'rectal stimulation' (can't wait to tell his future girlfriends about this stuff over an awkward Thanksgiving dinner). The hope, of course, is that he rewards the nurses' hard work with some stool. He obliged this morning, pooping so vigorously just as we went to change him that the poo shot out of his crib and onto the floor. C stayed, laughing and unphased, while I fled the room shrieking like a frightened girl scout. My squealing provided the nearby nurses with several minutes of unabashed delight. Sue me. I'm not used to airborne poop.
After Truman had carpet-bombed his room and his mother had changed his clothes, I managed to stop hyperventilating long enough to hold him while C pumped breastmilk. When she had finished, our nurse suggested that we take Truman for a little stroll around the NICU. It would be a good way to get us out of our little room and would give us a new means of bonding with the little man. The nurse set up a mobile pole to accommodate all the doodads that Tru is hooked up to and we were on our way. C carried Tru and I manned the doodads.
Fifteen steps down the hall, we passed a trio of nurses who were attending to a crying baby. They stopped whatever they were doing to stare at us. We passed a group of doctors who paused with mouths agape to gawk at us. We passed another nurse whose stern gaze confirmed what we had begun to suspect: baby field trips are frowned upon in the NICU. She told us as much and sent us back to our room. When we got there, our well-meaning nurse was on the phone for the third admonishment she'd received for sending us out of our confinement. We felt bad for her, but she took it in stride. I imagined Tru, during his brief taste of freedom, whispering "Viva la Revolucion" to the cribs of his compatriots. Alas, it was back to his room for our little Che Guevara.
We're back on feeds, having gone from 10 ccs to 33 ccs in one day. Tru is still downing his milk like a champ. We hope to continue to increase his feedings without incident, but we're used to speedbumps at this point.
More info as we go.
Thanks for your love and support for Tru and Fish. Much love to you.
Tru continues to recover, slowly but surely. Yesterday he was bottle-fed barium (a water soluble contrast medium that shows up on x-rays) so that doctors could follow the passage of food from his mouth to his colon. The hope, of course, was that nothing unusual would be seen. After the initial x-ray (taken while he ingested the barium), Tru endured several subsequent x-rays over the next few hours. The results were good: Truman was put back on feedings today.
Incidentally, while Tru was being bottle-fed the barium that tastes like chalk, he chugged it like he was pledging a fraternity. The radiologist looked on in wonder, offering only "I promise you, that stuff does not taste good." After two weeks of not eating, Truman has probably lowered his culinary standards.
Good test results mean feedings, and Truman guzzled his first feeding of 10 cubic centimeters (2 teaspoons). Our hope is that the feedings lead to more pooping, which will in turn lead to less intestinal discomfort. In that regard, the next few days will be telling. He's starting with 10 ccs and be moved very slowly to larger feeding amounts. Different doctors have different guesses as to how much longer he'll be in the hospital (estimates range from 1 week to 1 month), but our attending neonatologist promises to take the feeding process at a snail's pace. Though we want him home soon, we also want him home healthy. He can take his time.
We think of Fisher everyday. Sometimes we are breathless and wrecked by grief, but occasionally we are buoyed by his memory and the love we still feel. We miss our guy.
Doctors appear very positive about Truman's recovery, but C and I know better than to put the cart before the horse. We monitor him closely, praying for his health.
There were more acts of selfless support for us this week, and others that had escaped my memory, and the list has grown so long that it's nearly comical. The hospital refrigerator was too full of C's milk to accommodate more, so a nurse offered to take some home and store it in her fridge. The medical fellow who'd been with us for weeks bought Tru a Superman onesie. A friend, who happens to be a co-worker, made a donation to the TTTS foundation on Fisher's behalf. The mother of another friend from work wrote us an astonishingly gracious card to express her condolences.
Also, our friends from the improv community have been, much like the rest of our friends, insanely kind. "I've got your back" is a mantra of ours now, and it's one that we picked up from you.
Finally, C's parents left on Friday. They cooked, cleaned, chauffered and entertained us during the most difficult time of our lives. They mothered and fathered us while we did our best to mother and father our boys. They are heroes.
Much love to you. Thank you.
Post-scriptum: several of you have asked if there is any particular charity to which you might donate in Fisher's name. We haven't yet set that up, but we're working on it. Thanks for asking. And to those of you who have already made donations in his name, thanks for giving.
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.
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:
More antibiotics for the next 3 days (10 days total)
No feedings by mouth (intravenous TPN only) for the following 4 days (14 days total)
Upper Gastro-Intestinal Tract X-Ray to determine whether intestinal tract is functioning correctly
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.
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:
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.
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.
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.
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.
On Tuesday, at 32 weeks and 3 days, our ultrasound revealed low fluid around Baby A. Past 32 weeks, our high-risk doctors suggested that we have C admitted to the hospital for monitoring. In case we had to deliver early, steroids were administered to aid lung development in the twins. C was given twice daily non-stress tests from Tuesday through Thursday, when she was also given another ultrasound. NSTs were great, but the ultrasound confirmed the low fluid in Baby A's sac. To our surprise, doctors recommended that we deliver that night via c-section.
We had hoped for 34 weeks, but 32 weeks and 5 days was as far as we would get. Doctors assured us that "32-weekers" routinely had "successful outcomes". We called our families, who came as soon as they could.
At 8:19 on Thursday, October 15th, 2009, Truman Richard Kayne and Fisher Daniel Kayne were born. Truman weighed 4.5 pounds and Fisher weighed 3.2 pounds. Trying my best to be partial, these are damn good-looking boys. Their Apgar scores were both 9 of 10 (Columbia doesn't give 10s, since newborns 'never' have full color in their hands and feet, so the boys are already testing well). More on Apgar here: http://www.babycenter.com/0_the-apgar-score_3074.bc
Tru and Fish were whisked away to the Neo-natal Intensive Care Unit (NICU), where they were given some assistance breathing (standard care for preemies) and put on monitors. It's a bit jarring to see the boys hooked up to machines, but they're receiving the best care on the planet and they're doing well. The tubes hooked up to their noses help them breathe, as 32-weekers have trouble breathing on their own (again, this was to be expected). They get their nutrients intravenously and are kept in isolettes (http://tinyurl.com/yf8ra8j).
As of today, Truman has been made to lay on his right side to treat a small pneumothorax (another minor complication common among preemies, pneumothorax is air around the lungs that prevents complete expansion. Often, a pneumothorax will be reabsorbed easily.) While adults breathe 21% oxygen, Truman's assisted breathing is pumping 40% oxygen, while Fisher has gotten as low as 25%. The closer they get to 21%, the better...that's when they can start feeding. Fisher has been doing well enough that he fed (on colostrum that C has been pumping...http://dictionary.webmd.com/terms/colostrum) today. We're hoping that Truman will be able to feed soon, but we're not rushing him.
C, unfortunately, is still itchy as all heck. What we had thought was Obstetric Cholestasis has turned out to be a pregancy rash called PUPPPS (http://dermatology.about.com/cs/pregnancy/a/puppp.htm). Good news: it will go away on its own. Bad news: it may take up to 2 weeks after delivery. Carrie is toughing it out, but it's torture.
We'll update periodically, and thank you all so much. Our boys are doing well, though they may be in the NICU for around a month, we're happy to have them in the best hospital and with the best doctors. We're hoping the parents aren't too shabby either.
Yet again, apologies for the delayed post. Things have become a bit hectic on our end.
Since the beginning of her 3rd trimester, C has been itching a bit, but as of a week ago the itching became unbearable and unremitting. Today marks the 6th consecutive day without sleep, and she is covered in self-inflicted scratch marks. Apparently, in roughly 7 of 1000 pregnancies, women develop a condition called Obstetric Cholestasis (OC). In OC, bile acids enter the blood stream and cause severe and unrelenting itching. OC is very rare, but more common in mothers of twins than in mothers of singletons. I have no idea what 6 days of sleeplessness is like, but I do know that sleep deprivation is form of torture used on enemy combatants. C has just been elevated from generally amazing to superhero/sainthood status.
There is an entire support group devoted to moms with OC (www.itchymoms.com) but most of the messages posted attest to the frustration of those who suffer from it: the itchiness, in many cases, does not subside until delivery.
After a week of normal ultrasounds and echo-cardiograms, Dr. Simpson recommended that we begin bi-weekly monitoring as we cross the 32 week threshold (which passed this weekend). Today, Baby A's fluid was low enough that C was again admitted to triage at the Labor and Delivery unit for Non-Stress Testing, which we passed without incident. However, Dr. Miller has asked C to be admitted to the hospital and receive steroid shots in case Baby A's fluid situation does not resolve, in which case we would probably deliver in the next few days. During this time, C will be monitored closely. At this point, we're unsure if she will be staying in the hospital for several days (or weeks?).
Still, we hold out hope that we'll make it to 34 weeks (10 days away), when risk of pre-term complications diminishes greatly. It's no great comfort that our primary doctor (Simpson) is out-of-town while these decisions are being made, but Dr. Miller has given us excellent, if cautious, care up to now. Simpson returns on Monday.
For now, C is in hospital, I'm at work, and one of her best friends is by her side. I'm heading home to grab stuff for this unexpected hospital stay and we'll play it by ear.
Thanks to everyone for everything. We're in the home stretch now.
Nothing new to report on Thursday. Baby A still looks good, but with slightly low fluid...Baby B still looks a bit small, but with ample fluid. All dopplers still look perfectly normal.
On Tuesday we have another growth scan and echo-cardiogram. More then.
Tuesday's appointment was something of a rollercoaster.
At our morning ultrasound, we found that both babies had reasonable overall growth, but baby B (our former donor) had an abdominal circumference below the 5th percentile, while his head has begun to make up a greater percentage of his overall weight. All his vital signs were good, but Dr. Miller recommended (in consultation with our primary doctor, Lynn Simpson) that we go to the triage nurse at the Labor and Delivery Unit to have a Non-Stress Test (NST). NSTs monitor the fetal heart rates and check for irregularities. Because we neglected to ask about the ramifications of 'failing' the NST, we were pretty anxious on our way to Labor and Delivery.
At triage, we waited for hours while more pressing cases (a C-section, a woman in labor, etc..) were seen before us. Finally, we were ushered in to an exam room, where two monitors were strapped to C's belly. Unfortunately, every time the twins moved, the monitors had to be moved and the test began again. After an hour, the test results were in: the twins looked "beautiful." Heart rates were "excellent".
We met with Dr. Simpson at the end of our day, and she told us that the results of NST were reassuring (we preferred "beautiful"). There was some discrepancy between Miller and Simpson's predictions of our delivery date. Miller suggested that it was highly unlikely that we'll get past 32 weeks, whereas Simpson held out hope for a later birth. If at all possible, we'd like to make it to 34 weeks, when pre-term complications are much less likely.
While I returned to work (after a 5 hour hospital morning), C went home and went about trying to find out the results of a fetal MRI that she'd undergone over a week ago. The doctor in charge of reading the MRI results had gone to Europe for a week and had, for whatever reason, not been able to give us the results immediately upon her return. With all the other stuff that's been going on, not knowing the MRI results had become just another focal point of nervousness. When C called and finally got the results, the exchange went something like this:
Nurse: Ok, so I'll read from the chart. C: Great, thank you. N: "Baby A MRI results are reassuring. Fetus shows no visible signs of neurological impairment. Baby B MRI results are reassuring. Fetus shows no visible signs of neurological impairment." C: Oh, thank god. N: And at the bottom it says...um... C: It says what? N: This doesn't make sense... C: Sorry, would you mind reading what it says, please? N: Um..."There is evidence of cerebral hemorrhaging." C: What? N: That can't be right...umm...I'm going to call the doctor and call you back. Ok? C: Ok.
(five minutes later)
N:Hello? C:Yes? N: The doctor wanted to apologize. That was a typo at the end of the chart. It should have said "NO cerebral hemorrhaging." C: Oh. Ok. Thank you.
That's the worst typo we've ever heard of.
That night, C took me to dinner at Marlow & Sons in Brooklyn. She had also bought me a painting from a local store. It was my birthday. We celebrated and it was great.
Much love to our family and friends, who keep us in good humor and good health. More (less eventful?) next week. Thank you so much.
We had another follow up appointment on Tuesday and received mostly good news. The day started with an echocardiogram to monitor the boys' heart function. Baby A (our former recipient) still has a little thickening but we've been assured that this will resolve without intervention within the first year of his life. The unexpected news came about Baby B (former donor). It seems his heart has thickened a bit as well. The Doctor expressed that this latest development is not cause for alarm (the thickening is "barely perceptible"); it is just something to monitor. We have a follow up echo scheduled in a month.
We then went to the Neo-natal Intensive Care Unit (NICU) where we met with a neonatologist who gave us a tour of the facility, in case the boys have to spend time there. We are still holding out hope that the NICU is not in our future, but our primary Doctor has been preparing us for this scenario. Thankfully, Columbia's facility is the highest rated NICU in NYC.
Our day ended with an ultrasound and an appointment with Dr. Simpson. It seems the fluid levels for both boys have evened out and are now within the normal range. We were extremely happy to see this balance, as we'd been concerned about Baby A's low fluid for the past week. Dr. Simpson seems to think we're in a good place and doing nicely, so we remain optimistic.
Two other events of the week worth mentioning:
First, Dr. Bebbington from CHOP called us to follow up on the twins. CHOP is so unbelievably awesome. If ever anyone we knew were in the difficult position of needing pre-natal care of any kind, we would recommend CHOP without reservation.
Second, Oxford Health has begun sending us letters (seven in total) that say that continued ultrasounds are "not medically necessary." Oxford is doing its best to stop paying for our care. According to our doctors (who are literally among the WORLD EXPERTS in the treatment of TTTS), these ultrasounds are necessary. The billing department at Columbia has taken up our cause and assures us that we will receive the care we need and not be billed for it. Still, it was upsetting to find out that as soon as we needed the benefits of our insurance, Oxford started doing whatever it could to deny us those benefits. We pay $12,000 a year for insurance. Insurance is supposed to cover us.
As always we continue to be grateful to the friends and family that sustain us. Also, thanks to Drs. Simpson, Miller, Lerner, Bonano, Bebbington, and everyone at CHOP and Columbia.
Today we had a follow-up ultrasound to assess the fluid level in baby A. It seems things, for the most part, have remained stable. They were able to find one pocket with 3cm of fluid (normally a good indicator), but the tech noted that there may actually be less fluid than on Tuesday. All dopplers and heart rates remain normal and C's cervix is still long and closed, so the babies are in no imminent danger. The doctor on call let us know this low fluid is just something to monitor, and until baby A has no fluid at all, we shouldn't get too concerned. We were sent home with a prescription for rest and liquids for C. So, we continue to hold out cautious hope that our boys are doing just fine.
We have another appointment on Tuesday and will update then. Thanks again for all thoughts, prayers, and well wishes.
Something of a hiccup at today's growth scan. All Dopplers and growth were good, both babies had grown on target and heart rates were good. Baby B's fluid was normal. However, Baby A, the larger 'recipient' baby, appeared to have less than normal fluid around him. His Deepest Vertical Pocket was measured at 2.1 cm (3-8 cm is normal). This finding was pretty unusual, since Baby A had always had more of everything--more nutrients, more fluid--it was surprising to find that he may have lost fluid. Dr. Miller was quick to point out that the DVP measurement is not perfect; when the baby is oriented in different positions, his distance from the membrane changes. They've scheduled a precautionary follow-up fluid scan for this Friday in the hope that Baby A will demonstrate regular fluid levels then. If things aren't better, we may have to admit C to the hospital for closer monitoring.
Thanks for your support. We'll follow up Friday afternoon.
Another ultrasound today at Columbia. Again, things looked encouraging. All Dopplers were normal and Deepest Vertical Pockets were well within normal range. C's cervix remains long and closed (is that too much information? sorry.), which is good news--as the cervix shortens, pre-term labor becomes more likely. Our larger baby still has a heart that is thicker than normal, but so long as the situation doesn't worsen (it hasn't yet), he should see his heart return to normal thickness within the first year of his life.
For the first time, our high-risk doctor discussed the possibility of prolonging the pregnancy as far as 36 weeks. It's not likely, but we're pretty excited to have that option in the conversation. In the past, we've been braced for birth by C-section as early as 32 weeks, followed by a 4+ week stay in the NICU (Neo-natal Intensive Care Unit). Hoping to make it past 32 weeks, and today's visit made that seem possible...
Our Thursday appointment (ultrasound measurements of growth) went as well as could be expected. The Deepest Vertical Pocket for both babies is now approximately equal, at just above 5 cm. In that regard, they're both in a normal range. The Dopplers were very good. The one issue that did have us concerned was that, though both babies have grown, the size discordance has improved very little (from 40% to 37%). C and I had hoped to see that gap close significantly. Though we weren't scheduled to see a doctor (all measurements were taken by a nurse), we asked to discuss the discordance with whoever was on duty.
When the doctor came in and looked at the measurements, she told us that she was thrilled with our progress. She said that we shouldn't expect the discordance to resolve (though it might), but we should monitor the smaller baby's growth as compared to other fetuses at this stage in the pregnancy. These measurements are made in percentiles. On Thursday, he was at 17%, as compared to below 10% pre-surgery. While 17% isn't ideal, below 10% is something of a danger zone, so the doctor (Dr. Lerner) was very positive about our progress. Apparently, we were somewhat unreasonable to think the discordance would have resolved so quickly. The doctor assured us that everything was going as well as it could.
Another successful visit. Next ultrasound on Wednesday.
Echo Cardiogram this morning showed little change in the boys' hearts. While we'd hoped to see the recipient's heart improve (Dr. Glickstein had told us that he was a 9 out 10 two weeks ago...we were hoping for a 10), Dr. told us that 9 out of 10 is perfectly fine. According to her, if we can maintain this level of heart health until delivery, we'll all be very pleased.
Ultrasound was brief (no measurements for growth), but encouraging. Deepest Vertical Pocket on the Donor was around 3.5 cm! That's the first time he's been within the normal range! Exclamation points! When Dr. Miller (a lot of names to keep track of) came in to assess the pictures, he said "Everything points to a successful laser surgery. If I had only seen today's ultrasound and didn't know your history, I'd have assumed we were dealing with a normal twin pregnancy." Best news we've heard in a long time. We spent the little time we were alone high-fiving Miller's assessment.
We had a short wrap-up with Dr. Simpson, then hit the road.
Though the news was all good, we're still not sure where we really stand until next week, when we see if the donor baby closed the size discordance at all. He may not catch up before he's born, but we hope to see improvement.
C's dad is driving in this week. My parents will come in on Sunday. Thanks to all friends and family. We'd be nowhere without you.
Had our quickest ultrasound on Friday. Donor baby's Deepest Vertical Pocket had increased to 2.7 cm...more good news. All signs point to a positive aftermath to the laser surgery. We're not in a 'good' place yet, but every appointment shows notable progress. We're still monitoring resistance in the donor baby's umbilical artery (currently at the upper limit of normal) and heart thickening on the recipient baby. Another appointment on Tuesday.
Sorry to have been a negligent blogger. Recent updates:
Last Friday we met our new doctor, Dr. Lynn Simpson, at Columbia Presbyterian Hospital. We had an ultrasound and echo cardiogram, followed by brief meetings with two members of our new medical team. The news was generally positive, though growth discordance between the twins is still large (around 40%). Doctors informed us that we might have to wait some time for the donor twin to catch up. As for other indicators, donor bladder was visible, donor baby had slightly more amniotic fluid, and recipient baby had significantly less amniotic fluid...all good signs. We have another appointment (we may have these every week) tomorrow.
C's mom came this week, replacing C's sister, who had been with us the previous week. Our friends and neighbors continue to stop by, help out, and bring gifts. We are very lucky to know you all. Thank you.
On Monday we had our follow-up ultra and echo; the results were very good. The most important piece of information that we received was the cardiac score (lower is better) of the twins. Pre-operation, the score was 7; post-op, the score was 2. Boo-yah. That's not perfect (a score of zero is ideal), but it's much better.
The donor has a small but visible bladder and, as a result, some amniotic fluid around him. Excellent news. The recipient's heart is functioning better, though he's still adjusting to the surgery and pumping out a bit too much amniotic fluid, which is not ideal. During the operation, doctors removed 1400 ml of amniotic fluid from his sac, leaving him with a Deepest Vertical Pocket of approximately 6.5 cm. At the follow-up a week post-op, the DVP had grown to 8.1 cm. Dr. Johnson informed us that this increase was not uncommon and that the recipient will most likely slow his output of fluid as his body acclimates to receiving the appropriate amount of nutrition from the placenta, rather than the excessive amount he was receiving pre-op.
All told, the surgery and its immediate aftermath have gone as well as possible. To quote Dr. Johnson, "the only way it could have gone better is if we'd found a sack of diamonds in there."
We're back in Brooklyn now. C's mom has left us and been replaced by C's sister and niece. Pretty awesome to have such support from our families. Lucky. C is off total bed rest, and is now on modified bed rest (no lifting, traveling, etc...). Still drinking Ensure thrice daily, but finding better ways to do it (in a milkshake?).
On Friday, we meet our new doctor in NYC, Dr. Lynn Simpson. She specializes in high-risk pregnancies and comes highly recommended.
Thanks to our friends and family for letting us lean on them. Thanks to our doctors for taking care of us. Thank you so much.
Just returned from an encouraging stay in the Philadelphia area. Going back to work now, but will update more thoroughly later on. Thanks for all your support...
C spent the yesterday post-surgery with a few unpleasant side-effects from the anesthesia: nausea, cramping, and an itchy nose (from the morphine). Though she was very hungry, she had trouble keeping food down until the evening, when dinner went smoothly. The nurses were surprised by how quickly she got in and out of bed unaided.
Today, at a follow-up ultrasound we checked in on the twins to find some encouraging news. The donor baby's bladder, which had been invisible for a couple of weeks, was visible and he was beginning to develop some amniotic fluid around him. After so many tough days, it was great to get some positive word from the twins.
I had to return to NYC for work. (In the train station, I caught myself chanting under my breath "I can see his bladder. I can see his bladder." All apologies to the good citizens of Philadelphia, who regarded me with some unease.) I'll be here until late Thursday night while C's mom watches over her in their lodgings in Jersey. On Friday, I'll take C's mom to the airport and stay with C until our last ultrasound in Philly (we hope) on Monday. We'll hope to see some turnaround in the recipient baby's heart at that time.
Thank you all for your support. Thank you so much.
The short story: Dr. Johnson tells us the surgery went as well as possible. C stays in the hospital tonight (with her mom and me), but is in good spirits and health. We'll have another ultrasound tomorrow, then monitor the pregnancy closely the rest of the way.
The long story: we (C, her mom, and I) woke up at 5 am and drove to CHOP. C was feeling uncomfortable due to increased amniotic fluid around the larger baby. Left untreated, this excess fluid was likely to increase unchecked and contribute to further complications. For our doctors, however, this fluid meant more room to operate. To quote one of the three doctors who performed the surgery, "Posterior placenta and increased fluid? That's two thumbs up for us."
At 6 am, doctors and nurses begin rotating through our room, prepping us with detailed information and giving C antibiotics and antacids. Again, we were grateful for the detailed descriptions and attention given by the people at CHOP. We are told (by Arjunan Ganesh, our anesthesiologist) that C will be given several drugs (including Valium and morphine) that will produce two primary effects: first, the drugs will calm the twins, making them less likely to move during the procedure; and second, the drugs will make C groggy but help her retain consciousness.
At 7:50 am it was game time. C, now dressed in a hospital robe and hairnet, walked with us down the hall where the entire surgical team (around 10 people?) greeted us. When it came time for C to separate from us, the surgical team walked with her through the OR doors. As she walked away, we could hear her say to the surgeons "So...is everyone feeling rested and alert?" Everyone laughed. Her mom and I walked back to the hospital room.
We expected the surgery to take one hour, so we went down to the cafeteria to get some food. We returned to the room and ate. We talked about anything we could think of to pass the time, but at 8:50 we sat silently and waited. The surgery took one hour and fifteen minutes, and I can safely say that the last fifteen minutes were the longest of my life.
C was wheeled (in her hospital bed) back into the room at 9:05. The doctors and nurses said that everything had gone as well as possible. In addition to cauterizing 8 vessels (an average number, apparently), doctors removed 1400 ml of excess amniotic fluid (over a third of a gallon) that was around the larger baby. C is now much more comfortable and noticeably smaller. I would ask her for details about the goings-on in the OR, but she's sound asleep.
Now, we hope for equal growth between the twins. Tomorrow, we'll have a follow up ultrasound and echocardiogram. C will stay in the Philly area for the upcoming week, then have another ultra and echo on 7/13. Every week thereafter, we'll check in with the twins to see how they're responding to the surgery.
Thanks for your continued support, emails, calls and texts. We're sorry if we weren't able to respond to each of you individually. Much love to you all. We'll continue to update today and throughout the week.
We left home this morning at 7 to have a follow-up ultrasound at CHOP. We got good news: instead of progressing, the TTTS has remained in early Stage 2. In fact, Doppler readings (measuring blood flow of the fetuses) had improved slightly. Though the Deepest Vertical Pocket in the larger fetus had increased, Dr. Moldenhauer assured us that this increase would, in fact, make next Monday's surgery easier. The amount of fluid surrounding the recipient twin and the location of the placenta (posterior) are apparently very good conditions for the laser surgery. Yet again, the people at CHOP were patient, thorough, and reassuring.
In NYC, we're switching C's primary care to Dr. Lynn Simpson at Columbia. Thanks to those of you who have given us suggestions. We've been assured (confirmed by exhaustive Googling) that Dr. Simpson has ample experience with TTTS. She's apparently a highly sought-after doctor, so we may have regular (weekly) ultrasounds with members of her staff and her fellow doctors for a bit before we actually get to meet with her.
Many thanks again to our friends and families, with special gratitude to our new friends at OP, who've been unbelieveably supportive.
Next Sunday, C's mom flies in from Indianapolis to be with us for the week of the surgery, which begins the following morning.
http://www.chop.edu/consumer/jsp/division/generic.jsp?id=81149 (CHOP's twin-twin page--click 'watch our CDH video' in addition to reading the info provided)
All things considered, we received very good news yesterday.
After a week of uncertainty, we drove to the Children's Hospital of Philadelphia (CHOP) yesterday. C was at 16 weeks and 3 days. Ultrasound and Echo Cardiogram confirmed that we had indeed reached early Stage II Twin-to-Twin Transfusion. Stage II is marked by (among other things?) the inability of the donor twin to fill his bladder with urine. This development indicates that the donor (smaller) twin has, due to lack of vital fluids, begun to prioritize his vital organs and entered a so-called 'survival mode'. The recipient (larger) twin develops thicker walls in the heart as a result of having too much fluid.
CHOP, aside from having the most unfortunate acronym for a hospital, was astonishing. The receptionist, counselors, nurses, and doctors were thorough, patient, and kind. We arrived at 10 am (having spent the previous night at a nearby Comfort Inn) and stayed until nearly 6 pm. At every step, our caregivers checked in with us to make sure that C was comfortable and that she and I understood the process.
At the end of the testing, we met with Dr. Mark Johnson who recommended a procedure called Fetoscopic Laser Surgery. This procedure involves severing the placental connections between the twins, resulting (one hopes) in the restoration of balance with regard to blood flow, nutrients, etc. Approximately 80% of TTTS cases treated with laser surgery result in successful delivery of both twins. Dr. Johnson believes we should wait until C is at 18 weeks (July 6th) to perform this procedure. Until then, we'll keep C on modified bed rest and she'll supplement her regular diet with Ensure after every meal (a recommendation made by Dr. De Lia in Milwaukee and supported by the TTTS Foundation, though the medical community at large has not verified the efficacy of bed rest and protein drinks). Also, we'll check in at CHOP next Tuesday (June 30) to make sure that TTTS hasn't progressed.
The quality of care we received at CHOP was truly excellent. After some poor experiences with doctors in NYC, we were greatly relieved to find ourselves in competent hands. We're by no means in the clear, but 80% is much better than what we'd heard from our last doctor.
Our gratitude to Dr. Lysikiewicz (St. Luke's) who diagnosed us, to Dr. Julian De Lia (Wheaton Franciscan), to Mary Slaman-Forsythe (TTTS Foundation), to Dr. Mark Johnson (CHOP), to Joy McDonald (CHOP), to everyone at CHOP, and to our family and friends, whose constant support continues to comfort and sustain us.
Saturday after his 2pm feeding, Truman Richard Kayne was released from the hospital. In order to gain admission to the hospital, I was given a Parent Pass, which I've been wearing on a lanyard around my neck. It was issued on 10/15 and expired on 11/17, the day Fisher became ill. On 12/12, wearing our expired passes, C and I drove the little man home.
