Christmas cath

Our holiday challenges are out of the way, leaving just relaxation and fun for the three of us to share throughout the rest of Peter's break. James was admitted to the hospital on Wednesday the 26th for a cardiac catheterization. He stayed overnight to be monitored, just a precaution since he's been throwing up a lot while on the tube and needed to stay hydrated for the procedure. At 7am on Thursday, the cath team took him to the cardiology floor, knocked him out with anesthesia, inserted a catheter, and spent a few hours getting detailed images of the blood flow and pressure of the various veins in and out of his heart. The doctor told us afterwards that the cath went great...his BT shunt looks great... his lungs look great... all in all, good news. He looks like a good candidate for surgery #2.

The cath finished up around noon, and James spent the afternoon in a recovery room getting his senses back after anesthesia. He recovered quickly and was discharged around dinnertime. He was a bit swollen, with a bloated face that made us laugh and some bruising on the leg that was bound all day, but he's mostly back to normal by today.

As usual, getting discharge actually in process and completed took a few hours at Weill Cornell, but we're getting familiar with the quirks and inefficiencies of the hospital. An unnecessary overnight just to keep him fed, yet no one fed him for hours after check-in?... no baby formula in stock? ... no nurses on the surgical floor that know how to insert a nasogastric tube? ...no one can find a record of what size tube they themselves had put in him originally?  Next time we go to the hospital, we'll bring our OWN feeding pump and our OWN baby food and our OWN bottles and our OWN nasal tube, and why not our OWN stethoscope while we're at it? sigh...

He got some lovely Christmas gifts though, including an adorable Santa suit from his Aunt Jen. We went to hear the chorale performance at Trinity Church on Wall Street on Christmas Eve, and little Santa got a lot of praise. He wore his suit to the hospital too, and charmed the nurses. After all, if he had to go to the hospital on December 26, he might as well get to take Christmas with him :)

excited to open gifts!

the new suit

elf face under the Santa hat

ho, ho, ho!

posing for a photo with Santa

Chunky boy

The tube is working! James is now 11 pounds, 9 ounces – almost 2 pounds more than when he started on the tube just under a month ago. The tube method is still no fun for any of us to deal with, and makes James throw up more than usual, but it is doing its job. Our boy is finally looking a bit chubbier, a good sign for the upcoming surgery.

I'm posting a few pictures of his growth since summer, and a new outfit :)

Time to pack this outfit away (August vs. December)

James thinks he's too old for this cuddly shot, thus the stink eye (July vs December)

Showing off those strong legs in his French overalls! mmm, yummy buckle :)

Wedding photos

Oops, I apologize for the poor job of sharing this link to our wedding photos (password: Compitello). We got these back a few weeks ago, and they went on facebook, but never made it past that before I got distracted by the hospitalization and feeding tube ordeal.  We don't have many photos of most of our guests, unfortunately, but we trust you had a good time... and definitely made our day unforgettable!

Kirsten & Peter wedding photos

As for a tube & surgery update: James is adapting to the tube, although it was tough on his stomach at first, and he has already gained over a pound since Thanksgiving. He has only pulled the tube out once so far, so we haven't had to do too much (very unpalatable) tube insertion. It doesn't hurt him to put the tube in, but it looks awful and is thus hard on us :)

His oxygen sats are up again, so the surgery will wait until 2013. He'll do the catheterization on December 27, and prepare for the Glenn Procedure sometime in January or February.

Happy Thanksgiving!

We had a great holiday with some of the nearby family members, and appreciate the company on Thanksgiving :) We were fortunate enough to be out of the hospital in time to celebrate the day, but could definitely not have left town, so it was wonderful to have guests come to us.

He checked into the hospital Monday, and had a feeding tube inserted into his nose in about 60 seconds flat. Unfortunately, docs required that he stay for nearly two days so they could monitor his progress. Additionally, I had to stay by his side so I could learn how to insert and care for the tube, and show the doctors that they could trust me to do this without their supervision. We thought this would be a relatively simple stay, and although in some ways it was. . . it other ways it was hectic and complicated. Doctors, nurses, medical staff and medical pump manufacturer representatives, social workers – people were in and out of the room nonstop throughout the duration of his stay. Discharge was such a relief on Tuesday night.

Our apartment has some serious medical gear now. The Joey Kangaroo pump, attached to a large pole, pushes milk from the suspended bag into his nasogastric tube and through to his stomach. The little guy gets up to 12 hours a day of tube feeding; essentially, he has a target amount to eat each day, and whatever he doesn't have the energy to eat by mouth gets pumped in overnight. The machine is noisy and requires frequent refills/cleaning/maintenance, in addition to the burping and other baby maintenance that James needs :) so we're still working on getting used to the new addition.

His new stuffed monkey from Aunt Liz is a big hit, but unlikely to keep his tail for long in James' eager hands!

Thansgiving Day Surprise :)

Normally, Kirsten would post a regular update, detailing the fun things our doctors had to say about James, and the awesome things she did to get James to the doctor, home from the doctor, and everything in between.

 

Today, it's my turn :)

 

Yesterday, November 14th, James had his first dose of Synagis, a vaccine for Respiratory Syncytial Virus (RSV), which is apparently a common ailment for cardiac babies. He'll get this once a month 'till the end of winter, so probably through March or April. He got this one at our pediatrician's office, and it was a very quick visit. We were in and out in less than 15 minutes, including check-in, weigh-in, and vaccine, which is pretty unheard of for us these days. James, however, was absolutely P.O.d. Apparently, Synagis is a fairly thick substance, so the shot is more likely to have an immediate sting to it than other vaccines. James turned the cutest, and saddest, beet red, and gave us all the most disgusted looks. I suppose I would do the same thing if I were in his place. Either way, one more vaccine down, and we were off to see the cardiologist.

 

Yesterday was an eventful day at the cardiologist. We had an EKG, they checked his BP and O2 sats, got an echo, talked with social services, and had a long talk with the cardiologist about . . . James’ eating habits . . .

 

In case we haven’t posted this recent enough for our readers to remember, James is off the charts in terms of weight, and not in a good way. He is now about 3 pounds, or about 30%, under weight for babies of his age, mostly because he doesn’t eat enough, and all our docs are very concerned about his weight going into the upcoming procedures: a cardiac catheterization toward the end of November, the goal of this being to get a clear picture for surgery in late December or early January. For normal-weight babies, it’s easier to recover from these procedures; underweight babies are at a higher risk, simply because they don’t have the fat reserves to recover, and they are generally a little underdeveloped in other ways physiologically.

 

So, to get James ready for the main events coming up, today docs are having a conference call to discuss inserting a naso-gastric tube tomorrow or early next week. This way, even if James doesn’t have the stamina or drive or hunger to eat his normal 20 ounces a day, we can literally finish off his meals or give him an extra meal or two through the tube, just like they did in the PICU and NICU.

 

This could be pretty awesome. Not only will family get to gorge themselves on food next Thursday, but we can also make sure James gets to fall into a food coma, too! J In some ways this also feels weird, like we’ll be “fattening the goose” for the holidays K

 

Either way, I think Kirsten and I are both very much looking forward to a happy bout of Thanksgiving Day Surprise meals, just a little on the heavy side, so James, too, can enjoy the peacefulness of eating just a little too much J

Flu, election, snow...fall photo edition

crazy eyes

We are elated the election is over, and finally there are other topics being discussed and reported! James stood in line with me for his first election, although he really didn't care about all the hoopla. At least he was patient, and didn't make a fuss while we waited.

He did just have the flu, which was quite an ordeal: it hit him quickly and hard, and our little guy was up all night several nights in a row, miserable from sniffling and coughing and throwing up. His fever was never much to worry about, but the congestion was major league. He celebrated his first flu by getting a chest x-ray, since respiratory problems pose a special risk for him. The results came out fine, but this seasonal sickness certainly garnered a lot of fuss. Thanks to Hurricane Sandy closing the schools all last week, at least Peter and I were well rested... going into it at least. By day 3, we were bleary-eyed and grouchy. A sick baby is no fun at all. By this week, he'd passed his flu to me (thanks, squirt) and somewhat to Peter. Not until I was weak from fever and nausea did it truly sink in that I can't ask for a day off :(

We got our first snowfall though yesterday, a lovely and welcome sight. We're all feeling better, so we bundled James up in his warmest clothes and took a little stroll.

snow gear!

we've been cooped up for too long so I have a ton of these...

Halloween!

sweet...

or scary...

Regular update

James saw his cardiologist today, so it's time for another tri-weekly update :) Not much is new, but for those who have been keeping track of his appointments, we'll provide an overview:

He's 9 lbs, 8 oz - not a very exciting gain. He got a frown from the doctor for that one. His catheterization, the day of hospital screening to prepare for surgery #2, is tentatively scheduled for the week after Thanksgiving, but can still be easily delayed further if his oxygen levels hold steady. Today's levels were unchanged from 3 weeks ago. His next medical check-in will be in 2 weeks, when he'll visit his pediatrician for 4-month vaccines. Our boy is definitely developing, despite his weight issues: he grabs and controls things with his hands, he gives full multi-syllable laughs, he is growing into tummy time and can almost roll over (he gets it if we start him partly on his side), and is close to sitting up on his own. He loves being held up in the air on his stomach, and for some reason, the letter 'b' cracks him up.

In the meantime, we have a few big events to keep us busy: Frankenstorm hits the East Coast in the next week, so we'll experience firsthand how long Bronx power shortages lag past the rest of the city. Then we can look forward to celebrating Thanksgiving, since hospitalizations will clear the holiday.

How far we've come

I just got a series of photos my mom took when James was first born, and was struck by how much he's grown. I have a new photo to share, and posted one of these early pics alongside. He's certainly grown and changed in 4 months! His next cardio checkup is Friday. His last oxygen stats were slightly lower, and he's been noticeably more lethargic in the weeks since, so we're expecting that surgery #2 will not be too far away. His next step is a one-day hospitalization to prepare for surgery and get enhanced visualizations of his heart: date TBD, likely November.

What his lethargy means on a daily basis is that he eats even more slowly than before and falls asleep midway through meals, so he ends up eating smaller meals more frequently. I spend the day mostly attending to his needs, and occasionally getting to take care of dishes or emails or trying to evict our very unwelcome mouse during brief naptimes. At 4 months, I had hoped to have more personal productivity, but nooooo... Apologies to anyone waiting for correspondence or photos or otherwise, but I'm working on that!

It is getting a tad frustrating to not accomplish much else, especially since even my job-seeking efforts have failed to unearth anything that provides a sufficiently flexible schedule to accommodate his frequent doctor visits yet pays enough to cover the shockingly high cost of infant daycare. James' heart is definitely unique, and even support groups and resources in the area don't address the complexity of his anatomy.

then...                                               ...and now

Doctor overdose?

This is an 'overshare' post, but deals with something I have become increasingly frustrated and confused by: the line between medical care as a need and medical care as a business. I'd love if anyone with a similar experience or knowledge of sifting through the health care system could provide their advice!

While I was around 28 weeks pregnant, my OB recommended I see a geneticist. I was a bit confused about why – DORV is not linked to any genetic cause, 28 weeks is too late for an abortion if I wanted one, and the test they can run for informational purposes, an amniocentesis, carries the small but still possible risk of harming or killing the fetus. Nonetheless, even after making it clear I was not interested in the amniocentesis, my doc insisted it would be a good idea, and I naively believed that doctors know best. Instead, I showed up to the geneticist office and wasted my morning and my copay on a doctor who knew zilch about DORV and had nothing to recommend beyond the one test she had known in advance I refused. I was thoroughly annoyed and said so to my OB, who then admitted the referral is a standard practice to cover their backs, so I can’t later claim I didn’t get the option. In other words, this is the business end of medicine: “selling” services and tests. My next, high-risk, OB added to the cycle by redoing the same blood work the first OB had done, insisting she wanted her own office to check, and hitting me with a $300 bill for tests that weren’t medically necessary.

Now, I’m wondering if I’m being squeezed again. James sees 2 doctors regularly every few weeks, his cardiologist and his pediatrician. At his last appointments, we were encouraged to set up visits with a Nutritionist as well. Well, I called today to set that up and was told I must see a gastrointestinal doctor in the same department before the Nutritionist. That's 2 visits, 2 specialist copays, and... for what?

James isn't gaining much weight, and the NICU did assign him a feeding specialist during his initial hospital stay when he was born. However, his pediatrician has him on a special high-calorie diet already - as juiced up as she thinks he can handle - and his weight gain issues aren't critical. She tells me she's already spoken to the nutritionist, and the nutritionist agrees that his diet is pretty much at the max. So, 2 new consultations only serve to cover the bases, as no one expects that a change will be in order.

I feel like this is deja-vu; I sense my geneticist-induced rage appearing all over again. Do I feel guilted into consulting new doctors because “what if” they come up with a new idea; I should try anything for my kid’s health? Or do I assume this is ‘covering their bases’ too, and I refrain from jumping through hoops until/unless there is reason to think there is a problem they can fix?

Ughhhhh. We have had top-o’-the-line care, and we appreciate our proximity to such a reputable hospital and medical team. However, I am sick of our health care system as it is organized. You can only see whomever your insurance likes, even if it’s not the closest or best for you; you must pay up front copays for consultations even when the doctor has nothing to offer you; medical care is sold as a commodity with better care going to those with deeper pockets.

It’s a dysfunctional “store”: higher costs for quality care suggest you get what you pay for, yet up-front costs for doctors who then provide no service says you’re gonna pay anyways. You're charged just to walk through the door.

New photos

Because not much is new right now, I'll just add a few photos of our growing boy: storytime with Daddy, playing with toys and mastering his hands, and a few random pics just because he's so photogenic :)

In the News

Some articles we wanted to share:

Another family tells their story of having a boy with HLHS, very similar to James' DORV

Doctors transform adult cells into stem cells

Doctors regrow live heart

Molecule changes stem cells to heart cells

Live heart grown in lab (from 2011)

Looking ahead

Friday was a busy day, with visits to the cardiologist and pediatrician. James weighs 9 pounds now, a progression that made his docs very happy. We'll set up a consultation with a nutritionist soon as well. The more he grows before his next surgery, the better off he'll be. Normally a child his age should be around 11-13 pounds. Less is expected, considering his heart condition, but while 9 is fine it leaves plenty of room to grow.

Surgery #2, the Glenn Procedure or Hemi-Fontan, usually occurs in children like James between the age of 4-6 months. The timing depends on how long the initial shunt from surgery #1 holds up. When it wears out and/or he grows out of it, his oxygen levels will begin to fall and surgery #2 will be planned. James' heart was performing well as of Friday! So no date has been set, and it could theoretically be as late as early 2013. However, if he shows any signs that his stats are beginning to fall in the coming weeks, then his docs will likely operate a bit sooner so as to avoid flu season.

We interpret this to mean that surgery around Thanksgiving or shortly thereafter is likely. We'll keep you updated.

Aside from his weight, he looks great to the docs and is progressing well both physically and mentally. He concentrates, reacts to stimuli around him, and is starting to grab things. He is 'talking' more and seems to speak some sort of alien dialect - clicks and squeaks that I can't reproduce.

In non-baby-related news, we have our wedding photos back! There are too many to share online so we have a bit of sifting through to do, but we'll hopefully tackle that in the next few days. A website with pictures will thus be available and shared with you all soon :)

Leaps and bounds

James is establishing firm preferences for what he likes, such as grabbing with his toes instead of his hands. Last week he had his first true (multi-syllable) laugh, and his first thumb-sucking. Although he's been jamming his fist in his mouth almost since birth, he has figured out how to fit in just his thumb now. We don't want to encourage that, but it is pretty cute.

He's looking longer and positively chubby to our eyes. His last weigh-in was 8.5 pounds, and he's hopefully over 9 by now (the doctor will update us on that this coming Friday), but Peter and I both would swear he's bigger than that. Moving into the 3-month wardrobe!

James and I had a city outing last week: we stroller'd it up around midtown and headed to the baby store to get him a new toy (coupon about to expire!)  He hates being on his stomach, so he doesn't really work on the arm muscles, and hand coordination isn't his thing. He doesn't grab things yet, or even attempt to. He does love to watch things move though. Moving parts, flashing colors, music...anything that animates itself gets his attention. So, his new toy is a plastic piano that plays sounds and flashes colors when the keys are hit. This little kid that I thought hadn't developed hand coordination has been 'playing' his piano all morning. Granted, half of the keys he hits are by accident, but he has definitely figured out that he can intentionally hit the toy and make it play.

Our home!

As of this past weekend, we finally have our apartment put together.  Only one or two minor things left to assemble...shelves, curtains, kitchen racks are all in place!  A few photos of our new space in the Bronx:

our multi-purpose room :)

playspace

studio space

kitchen and pantry

kitchen again

love my art corner

dining room

balcony garden

nursery wall

James likes to look at his quilt on the wall

3 month "birthday"

September 23 marked three months of James! It being the weekend of our anniversary as well, the three of us made our way to the Bronx Botanical Garden to celebrate. It was our first visit to the BBG, and the garden is truly spectacular. We also had a bit of fun photographing James, who seemed entirely unimpressed. I did catch him though in full grin as we made our way out of the park: the photo below is the best shot I've taken of his lightning speed smile, which usually photographs as just a blur.

Photo Book

James has a new pediatrician and a new diet to bulk him up. So far, his appetite hasn't increased but his behavior has improved. The fussiness from last week is gone, and with the new antacid medication to calm his stomach, he's once again our little sweetheart.  He visited Central Park over the weekend, brunched on the Upper East Side (no coffee for him) and escaped the city to take a hike in the woods.

He also has his first photo album, courtesy of his aunt Janan! We've placed some of our favorite photos from his first few months in this Shutterfly album:

Click here to view this photo book larger

You'll love award-winning Shutterfly photo books. Start your own today.

2+ months

It's hard to believe James is already 2 and a half months old... so much has happened in this time, yet he still seems so new to us. His personality is forming and changing. He wants to talk and play and watch things move all the time. Sitting in his chair no longer excites him unless he has a video to watch, or a mobile moving and playing music, or one of us in his face interacting with him. We try to give him lots of things to look at to keep him engaged. He 'stands' on his legs when we hold him up and he can usually, although not always yet, hold his head up on his own now.

He is finally nursing properly, although we still alternate with bottle feedings so that we can give him all of his vitamin and calorie supplements. It's so hard to decide between the immunity benefits of nursing and the calorie/weight-gaining benefits of formula. His heart slows him down, so the formula helps him beef up a bit, but nursing helps me by leaving fewer bottles to wash!