A Broken Heart

Incidence:
35,000 children are born with heart defects every year (American Heart Association)
Only 1% of those children have truncus arteriosus (many sources, including the Herma Heart Center where Turnip may be treated)
That means about 350 babies are born in the U.S. with the same condition as Turnip every year. (330 according to the Morbidity and Mortality Weekly Report from jan 6, 2006)
Treatment:
Surgery usually happens at 6-12 weeks (EPA, page 4)
15-50% of children require another surgery within the next five years (i.b.i.d.)
All heart valves are replaced after 12 years(i.b.i.d.)
Newborns with truncus arteriosus stayed in the hospital for an average of 30 days during 2003 (CDC, table 2)
The hospital charges for this stay (not including lab tests and doctor fees) ran to $200,000 (CDC, table 2)
Mortality:
In a small study published in 1996, 6% of infants died before surgery and 10% died during surgery (EPA, page 4)
In a national survey, 20% of newborns with truncus arteriosus died in the hospital in 2003 (CDC, table 1)

Tuesday, September 29, 2009

oh yeah,

I forgot to mention that the doctor didn't see any irregular heart beats during the entire echo, yesterday. This is fantastic. Oliver has had an occasional arrhythmia since his one prolonged spell in the hospital. Hopefully, it will stay gone.

Monday, September 28, 2009

cardiology appointment, part ???


Oliver's check up went very smoothly. It helped that Evelyn went to a friend's house to play.

Big picture: All is well.

The numbers:
BP 118/43
HR 113
WT 17 lb 2 oz
HT 27.5 in
HC 46.5 cm

The pictures:
His chest X-rays still look a bit wet, but drier than last time.
His echo looked similar to last time: mild narrowing of and backflow through his homograft/pulmonary and truncal/aortic valves. No pressure gradient along the homograft. His aortic/truncal valve is acting as if it had three leaflets (normal) even though I seem to remember it has four.
His chest sounds good: no crackling.

The meds:
discontinue his diuretic (spironolactone with HCTZ) entirely (YAY!)
discontinue his antacid (Prevacid) entirely after consulting with his pediatrician (YAY!)
switch from captopril 3x a day to aldacazide 2x a day once we finish up the captopril we have in the fridge (YAY!)

Future plans:
Next appointment will be on December 14.
Oliver's cardiologist cautiously projected surgery won't be necessary for years (what a beautiful word: years).
Oliver has no hard-and-fast proscriptions against participation in sports as he grows, except maybe wrestling...because of all the isometric straining...apparently it can exacerbate the backflow thorugh his funky truncal valve. His cardiologist said that as Oliver grows he will work to find him a sport for every season if that's what he wants. Apparently, contact sports might even be o.k. depending on what kinds of replacement valves Oliver gets in the future and how his heart is functioning.

Summary:
We will taper Oliver down to 2 meds a day (down from 6 now) in the coming weeks.
Oliver's weight is tracking the growth curve...there is no need to worry about his nutrition.
Oliver is growing into his heart, so his lungs should continue to dry out.
His sternum should grow around the bony lump on his chest as he grows, making it less obvious.
He does not qualify for RSV shots this year: he is so healthy that the doctors assume he will be able to fight it off on his own.

Saturday, September 26, 2009

Cardiology appointment

Oliver has his check up on Monday and I'm terrified.

I don't want to take him. I don't want to hold him still while he screams during the echo. I don't want to know how his insides are doing. I don't want to once again enter the realm of no control--where I have no say in my son's care, where I just get to wait while the doctors decide what to do to him and then wait some more, heart breaking while they execute their plans.

Thursday, September 24, 2009

Poem

While searching for a letter my mother wrote to me shortly after my birth and gave to me shortly before the birth of my daughter, I ran across this poem. I remember sticking the 2" by 3" slip of paper to my mirror in college. Experiences towards the end of high school taught me this lesson once. During the past few years, I've learned it again.

We Wear the Mask

We wear the mask that grins and lies,
It hides our cheeks and shades our eyes--
This debt we pay to human guile;
With torn and bleeding hearts we smile
And mouth with myriad subtleties,

Why should the world be over-wise,
In counting all our tears and sighs?
Nay, let them only see us, while
We wear the mask.

We smile, but oh great Christ, our cries
To Thee from tortured souls arise.
We sing, but oh the clay is vile
Beneath our feet and long the mile,
But let the world dream otherwise,
We wear the mask!

-P.L. Dunbar

Wednesday, September 23, 2009

Houston, we have a...


...climber!

So, there I was, scrubbing the disgusting cabinets in our kitchen. I had opened the pot cupboard and the last time I looked, Oliver was happily banging the cupboard door and pulling out pots and pans. Then, I heard his raspberries getting higher. 'Surely not,' I thought, but when I turned around, there he was eye level with the sink. How he got there, I think I know. Big sister did the same thing. We eventually decided it made more sense to teach her how to safely get down than to discourage her sense of adventure. Many nannies at the playgrounds we frequented would try to "rescue" her... It looks like we're in for it again.

Tuesday, September 22, 2009

Oliver likes...


pretzels (and anything else salty). He grabs them by the fist-full and slobbers them all over his shirt front, and pants and everyone else around him.

Thursday, September 17, 2009

9 mo. check up

16# 13 oz
28.5"
big head
.
.
.
and that's all folks!

bliss

mobile

video

Friday, September 11, 2009

My friend, Margaret, nominated this blog for an honest scrap award. Without further ado, here are seven blogs that give honest snapshots of life and ten facts about me.1. Jennifer http://therepps.net/wordpress/

2. Rhonda http://hammockpotato.blogspot.com/

3. Nancy http://rebekahgraceellis.blogspot.com/

4. Ashlea http://cadenkonecny.blogspot.com/

5. Teddie http://itsallwet.blogspot.com/

6. Stephanie http://hereweblogagain.blogspot.com/

7. Chris and Laura http://www.caringbridge.org/visit/babettezimmy

Ten facts about myself:

10) I still worry that "the doctors" will come and take my son away.

9) My husband came home an hour late a few nights ago. By the time he arrived, I had checked the local news for homicides and bus accidents and planned my life as a single mother, including hours I would work and what I'd do about child care.

8) I have "symmetry issues" -- picture frames must be squared on the wall and if you do me a favor, I "need" to repay it.

7) I have a naively optimistic view of other people. I choose to believe that people don't intentionally try to hurt each other. When 9/11 happened, my first reaction was to think that some goofy kid had accidentally flown his airplane into the first tower. When the second plane hit, I had to abandon my Pollyanna explanation.

6) Contrary to my mother's claims, we are quite a bit alike. We both love color (yes, I do, mom!). We both strike up conversations with random strangers (as does my mother's mother. This habit used to mortify me). We both feel driven to fix the hurts in people around us.

5) I love, LOVE spreadsheets and graphs and charts. I can program Excel spreadsheets to perform magical organizational feats for me.

4) Despite my drive for clutter-free organization, I don't feel driven to keep things clean (this includes my kids' hands). Don't get me wrong, we're not filthy folk, I just believe that a little clean dirt or a few leaves never hurt anyone. I haven't caught my kids eating bugs, yet. I think I'd draw the line there.

3) My husband takes Oliver to the cardiologist's office.

2) Sometimes, I forget the intensity of our experiences in Milwaukee.

1) When my husband finishes graduate school, we will choose our next jobs based on where we believe Oliver will receive the best care and where we will have the best family support.

pincer grip




Oliver's recent adventures in eating:

Pears - juicy and tasty
Tomatillo Chili Sauce with Pork drippings - spicy and tasty
Cheerios - tasty
Avocado - squishy

Thursday, September 10, 2009

I saw it

Really, I did. Oliver was standing next to my prone form, holding onto my hip for support. Then, he let go and took two steps up to my head.

Then, last night, he crawled half-way down the hall into our bedroom so he could play with the boing-y thing on the back of the door. To most people, the boing-y thing is a door stop, to a baby, it is entertainment. Boing. Boing. B-B-b-boing!

No wonder he's eating so much, lately...and sleeping. The past three days, he's clocked in one two-plus hour afternoon nap. I've been waiting for this.

Monday, September 7, 2009

so very blessed


The past few days, I've been feeling so very blessed. I could sniff Oliver all day long--his warm, milk breath, the sharp sweet smell of his sweaty scalp, his sun-fresh skin. Yesterday, I came into the playroom to find him and his sister peacefully playing side-by-side. This thing fills me: my children are alive and they are mine. And it could have been otherwise.

Friday, September 4, 2009

new skills

blowing raspberries
standing unassisted for 5-10 seconds at a stretch
crawling up a step
eating french fries
wanting "up"
recognizing popsicles (and demanding a taste, or two or three)

Thursday, September 3, 2009

Oliver loves his papa

While at Oliver's great granma's home in CA, we realized he likes me (his dad). His mother was playing with him on the floor. I walked by, not stopping, and went into an adjoining room. He watched me as I went, doing his excited wiggle dance when he saw me. When I just walked by and went away, he started crying (could maybe even call it an offended howl). He wanted me--makes me feel special. I don't think his sister ever did that. My wife thinks it's the beginning of separation anxiety!

Wednesday, September 2, 2009

oranges



For a while now, Oliver had enjoyed playing hold the ball, eat the ball, drop the ball, chase the ball, pick the ball up, repeat. Apparently, clementines work as well as balls and taste a whole lot better.

milestones

In the past two weeks, Oliver has:

-taken his first flight.
-taken his first steps.
-met all three of his living great grandparents.
-determined that he really wants to eat whatever we're eating.
-fallen more in love with big sister. Now, he tries to chase her.

eating a vanilla See's lollypop on the plane ride home