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)

Wednesday, June 24, 2009

first shipment


32 # of frozen milky, milky shipped via overnight express to the Mother's Milk Bank in CO. I wish there were a closer facility, but at least I don't have to thaw and dispose of all the deep frozen milk in our garage.

Joy

At times I feel overwhelmed by guilt and depression. A heaviness settles over my body and every action seems to require nearly insurmountable amounts of energy. This morning has been one of those times.

I want to feel peppy, to have ideas of fun things to do with my kids. I lay in bed last night trying to come up with some. The juices just weren't flowing. And so, this morning I slept an extra two hours.

Sitting in my office, staring at yet another friendly rejection (I write for money as well as pleasure), I thought about how much of life is a choice...and how little those choices sometimes seem to matter.

Before sitting down to work, I read this article about finding joy. I do choose, every morning, to get up, to make my bed, to put on my clothes, to work or to play, and yet I still find myself occasionally beset with this heaviness, this inescapable lethargy.

All I can do, every day, is choose joy. Most days the decision is effortless. Today, I feel like I'm trying to swim through Jell-O!!!

Of course, anything is better with some colorful, wiggly desert. Maybe we'll make some jigglers today....ooo, ooooh, I know we can make a stained glass pie. I've never before done that with big sister. I feel a little lighter already.

Tuesday, June 23, 2009

Monday, June 22, 2009

of all things, Oliver likes...

...lentil stew, the spicy kind I make from scratch. Go figure, the kid won't eat rice cereal, but he'll eat stew dripping with ground red pepper. That's my boy!

Sunday, June 21, 2009

6 mo check up

Oliver now tops the scales at 6.6 kilos (14# 8 oz) and stretches out to 25" (63.5 cm). Which puts him a little on the lean side, but, hey, check out his dad!!!!

The pediatrician said he looks good, but advised us to keep trying with the solids. I feel a bit discouraged about that as he rejects the baby cereal outright. My friend Michelle (Little Miss E's mom) reminded me last night that I don't have to feed him cereal. Duh!!! I can feed him whatever he wants...like crackers, which he tried for the first time tonight, and loved. Big sister never really got into the mushy baby foods either.

Oliver also has the worst breath. It doesn't look like he has thrush. I keep checking and the doctor checked on Friday, too. Maybe its his fancy, schmancy formula (the most expensive formula in the store, by the way. $ 26.49 USD per 16 oz can of unmixed formula. That's twice as much as the regular stuff). I dunno, but it stinks!!!!

Oliver's little buddy





Little Miss E. came to visit last night. What a special treat to see her looking so good!!!

Oliver can...

video
(age 6 mo.)

Saturday, June 20, 2009

Oliver will eat...


video

..we just have to figure out what he likes!! Apparently, Joe-Joe's fit the bill.

Oliver loves...

video
...his grandma. We miss you already!

Friday, June 19, 2009

Oliver likes to...


He spent a good 10 minutes playing with this truck, touching it, pushing it, looking at it.

Wednesday, June 17, 2009

another first

At least we got this in right on schedule--6 months, just like big sister.


He loved it! Stomped and splashed and looked and looked...and yes, he did eventually lose his shorts!

Tuesday, June 16, 2009

through the night

I just woke up and checked on the kids. Oliver was lying 180 degrees from where I put him down at 7:30 last night!!!!!! Woo hoo!!!!

Sunday, June 14, 2009

sleeping

So, Oliver just put himself to sleep. He had a really rough patch--just inconsolable--around 7 pm, right when I was putting sister to bed. After exhausting every known trick in the book, I let him scream on the couch for 5 minutes. When I picked him back up again, he had a much easier time settling down. He watched his mobile while I snuggled with big sister, ate a bit and then seemed happy...so, I put him down and started getting ready for bed. I got suspicious after a few minutes, because he was so tired. When I went to check he was drifting in and out. When I came back a few minutes after that he was out. yay, little man.

Saturday, June 13, 2009

milestones

so, Oliver easily and frequently rolls from back to front. He occasionally rolls from front to back, but usually he just gets mad. He's also gaining better at sitting up. He still can't do it on his own--he's still a bit off balance--but he only needs occasional help. He loves to stand up and can stand on his own, if he's got something to hold onto. He turns the pages of books and grabs my nose. He also likes to talk to me and giggles when I make funny faces or nibble him.

Overall he's about two month behind what big sister did, developmentally and size-wise. This should be o.k., because he had a month less time in the cooker than she did and spent a month sedated and recovering from surgery after he was born. But, its not o.k. with me. I look at him and wonder, Will he always be behind? Will he ever catch up?

lazy boy

Oliver (who is now sleeping across my lap) has been growing so fast that even I can see it. He's no longer the fragile infant I brought home from the hospital. He's starting to catch up with big sister size-wise. He feels solid and is too long for his 3-6 mo. clothes although they're still a bit loose around.

However, I've been watching him breathe. I don't say that in a lovey-dovey, isn't-he-so-sweet sort of way. I say it in a watching-for-the-bottom-to-fall-out-of-my-world sort of way. And the little stinker is lazy (or something much worse). When he sleeps, he breathes normally. But, as soon as he wakes up, he stops using his chest muscles to breathe--its all belly breathing.

He also doesn't like to eat. He screams when he sees a bottle getting near his mouth. However, if I wait until he's asleep, he'll suck down substantial quantities. The last few days have gotten a bit better. If he's distracted, he'll drink a little bit while awake, but then he spits up...and this is a kid who never, never spits up. I don't know what his story is.

Good thing he has his 6-month check up in a few days.

And then, there is the sleep situation. When we brought him home from the hospital, he was very well trained. He could go to sleep on his own. Now, we hold him and snuggle him and rock him to sleep.

While we were in the hosptial, I asked our anesthesiologist what problems we should expect as Oliver grew. He told me that the biggest problem he saw was caused by parents. These parents coddle their kids, protect them from every negative experience and refuse to let the kids cry (In some cases, with very good reason: if the kid gets too upset, he can literally bust a gasket). As a result, the kids don't learn how to soothe themselves. They don't learn how to solve problems. As they grow up, they get into trouble, because they are always looking for solutions outside of themselves.

Am I doing this? Should I let Oliver cry a bit longer when he turns over onto his belly and starts hollering? Should I put him down in his crib to let him fall asleep by himself? We started doing it with big sister when she was around six months old.

Friday, June 12, 2009

seven things


My friend Margaret tagged me with this award.

So, here goes: 7 things I love and 7 blogs I love to read (tag, you're it):

I love:
1. Air Conditioning -- I like it cool.
2. My man -- I like it hot.
3. My boy -- I like it sweet.
4. My girl -- I like it sassy
5. My life -- I like it.
6. The internet -- I like it connected.
7. Hope -- I like to see beauty.

I love to read:
Ashlea's Page
Margaret's Page
Rebekkah Grace's Page
Andrew's Family's Page
Bek's Blog
Angie's Blog
365rhymes

Now you seven get to pass the award along.

We broke even!


We have now been back together as a family for as long as we were apart. We celebrated with milk, cookies and a few friends.

Monday, June 8, 2009

food

Oliver likes:

pear sparkler
popsicles
peas
blueberries
honeydew melon
formula
dried apricots
ice-cold water

Oliver dislikes:

rice cereal
breast milk
banana chips

Sunday, June 7, 2009

175:

That's how many days old Oliver is.

In five days, we will hit our break-even point.

June 12: the day we will have been home from the hospital for as long as we were there.

6 November 2008
+40 days joint bedrest
+70 days after Oliver came out
+110 days home
________________
=12 June 2009.

Friday, June 5, 2009

Calvin

Six months ago today Calvin's mommy posted a comment on this blog. We've never met but I think about her and her three children every day. I think about the "age-inappropriate" things our older daughters have been exposed to. I think about our sons. I treasure our friendship.

Wednesday, June 3, 2009

gratitude: U

U is for Unity HMO -- our health insurance

As of today, they have paid:
$80.940.86 for my hospitalization and Oliver's delivery,
$804,211.65 for Oliver's treatment since birth, plus an
unspecified amount for prenatal diagnostic services (I'll look it up later this week).

As of today, our family has paid:
$0

Of course, had we not had insurance, the bills would have been higher.

Monday, June 1, 2009

paradigm shift

It happened without my noticing. In my thoughts, I no longer label Oliver "my-son-with-a-heart-defect". I simply think of him as my son. If I concentrate on his troubles, he stays my son, who just happens to have a heart defect.

playing outside

video

first outdoor nap

ready for church


(Thanks, Margaret!)