Baptism

Dear friends,

tomorrow, the 14th of February, Truman Richard Kayne will be baptized at St. Peter's Church on the corner of 54th Street and Lexington Avenue in Manhattan. We'd like to extend an open invitation to all of you who have been so incredibly supportive of our family over the last year. Truman's baptism will be the very first part of the service, which begins at 11 AM and should end around 12:15, at which point the church offers a $6 brunch for anyone who might be interested.

Obviously, there's no pressure at all to attend, but we'd love to have you.

All our best,
C, M, and T

And finally...

I'm not sure why the last post printed so strangely. If it's easier, donations can be made by contacting Joshua Edwin at joe9020@nyp.org or at 212.342.0933.

Thanks again, and sorry for the sudden burst in posting.

Ack...almost forgot

Many of you have been so kind as to ask for a place to donate to in Fisher's honor. Below is a form you can print to donate to the NICU at Columbia-Presbyterian along with contact information for the point person there. Money we donate will go toward buying vital supplies and equipment for the NICU. Thanks again.

Donation Form

Gifts in Memory of Fisher Daniel Kayne

Donor Information

Donor First Name: ____________________Donor Last Name:____________________

Company (if corporate gift): _______________________________________________

Address: ______________________________________________________________

( ____Home____Business)

City:____________________State:___________________Zip:___________________

Daytime Phone: ________________________________________________________

Credit Card Information

____Visa ____MasterCard ____American Express

Card Number: __________________________________________________________

Card Expiration Date: ____________________________________________________

Name as it appears on card: _______________________________________________

Signature:_____________________________________________________________

Gift amount: ___________________________________________________________

Check Information

____Enclosed is my check payable to NewYork-Presbyterian Morgan Stanley Children’s Hospital. Please note on the memo line IMO Fisher Daniel Kayne.

For credit card donations completed forms may be faxed to: 212.342.0939 or

emailed as an attachment to: joe9020@nyp.org

Please address mail to:

Joshua Edwin

Morgan Stanley Children’s Hospital of NewYork-Presbyterian

Office of Development

654 West 170^th Street

New York, NY 10032

To make a donation by phone, or for more information, please call 212.342.0933.

Long time, no blog...

As expected, the blogging has been neglected in the first month of having Truman home. I'll try to recap the events of the past month or so, but I'll indubitably leave things out. Lack of sleep, not surprisingly, makes the memory foggy. So, in no particular order:

1. C's family (mom, dad, sister, brother-in-law and our two nieces) came for Christmas. We drove to my parents' home for Christmas day and went to a local church on Christmas Eve. The nurses from the NICU study arranged for us to have a large family counseling session with Dr. Welch (the head of the Nuture study). We discussed, among many topics, the importance of having family contact and support, possible speedbumps that we may encounter as we raise Truman, and how Dr. Welch thought we might best discuss Fisher's brief life with Truman. I found her answer to the last question to be very interesting. Dr. Welch suggested that we never hide our memories and photographs of Fisher. When Turman starts to ask questions about where Fisher is, we should be truthful but also give him an opportunity to form his own opinions. "Where do you think Fisher is, Truman?" Instead of foisting our adult grief and understanding onto him, we might let him come to his own understanding. We had toyed with the idea of telling Truman that he had a brother who spent his life looking over us, telling him that Fisher gave everything to keep Truman healthy. Dr. Welch cautioned that such an approach might make Truman feel guilty or responsible.
   
2. We spent New Year's Eve and a few subsequent afternoons and evenings with our apartment building's "Baby Brigade". We're officially old people now, hanging out with married parents. The rest of the Brigade is pretty cool, but passing the bottle of breastmilk during the football game is a clear sign that infants have assumed utter control of our daily lives.
3. Truman is awesome. He's essentially the emperor of all he surveys. His current hobbies are eating, pooping and scream-crying. He also dabbles in sleeping. I tried once to let him "cry it out" without picking him up. In his very direct manner of communicating, he demonstrated that he has several different decibel levels of crying and, should I prefer not to be exposed to all of them, that I should comfort him immediately. Message received.
4. Truman changes daily. I had heard that before, but it's pretty astounding to watch it happen. He now follows us with his eyes. He likes to play while lying on his back. It's crazy.
5. According to baby pictures of me, Truman looks exactly like I did when I was his age. At first I found this realization oddly flattering, as if he selected my genes while he was deciding to be born. But now it's more like I've traveled back in time to look at myself as a baby, i.e. bizarre. I (big Back to the Future fan) keep thinking that there will be a tear in the space-time continuum every time I hold him.

It's very possible that this will be the last entry on this blog. At some point, it went from a way to keep our friends and family informed to a way for me to keep myself sane. Having learned the therapeutic effects of writing, I may continue to blog somewhere else, but this chapter feels ready to close. Still, C and I read it over and over again in our hearts. We miss and love you, Fisher.

Thanks for your concern and generosity, both of which we continue to feel. It is our great fortune to feel so loved.

Stay well.

Home

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.

Much love to you all.

And now for something completely different...

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.

Thanks to you and much love.

Ambiguity and a birthday (sort of)

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:

1. 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?)
2. 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.
3. 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.

Much love to you and yours. Thank you.