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