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)

Sunday, November 29, 2009

mobility

Oliver has decided to walk. He's been able to walk for a while, but only short distances and only if forced. Now, when given the choice, he'll walk as often as he crawls. He'll also stop mid-journey, turn around and head in a different direction. He still can't stand up from a sit. He uses furniture to pull up, but I'm pretty impressed. Now, if only he would start using some form of communication other than grunting and reaching so I could figure out what he is willing to eat!

feeding update

I just don't want to give Oliver solid foods. It took so much work to get him to drink from a bottle and he kept fighting it even after he mastered the basic concept, that I don't want to move on. I want a little more time to enjoy the ease with which he now takes his bottle!!!!

Switching to solids has been anything but easy. His big sister ate everything and anything she could get her hands on. Oliver is more particular. Take tonight, for example. I let him have a few spoonfuls of my root beer float. He really liked it. He grunted, reached for it and opened his mouth like a little bird, but only if I fed it to him on a spoon. When I tried to let him drink it from the cup, he refused....this despite the fact that he loves drinking water from a cup. He knows what he wants and how he wants it.

gratitude: z

Z is for Z-Z-Z-Z-Z.

Oliver has started sleeping all the way through the night: 8:30 pm to 6:30am ! He did it at least four times last week. I love the extra shut-eye.

Thursday, November 26, 2009

gratitude: Y

Y is for "Yipee!!" 'cause I'm not on day 20 of a 40 day hospital stay today!!!!

HAPPY THANKSGIVING!


2009 BERBEE DERBY -- Like a Thanksgiving Day Parade, Only Faster

Wednesday, November 25, 2009

gratitude: V, W, & X

I stalled on my gratitude list for a long time because I just couldn't think of anything that started with the letter V. Today, while rocking my sleeping baby and looking out our front window, it came to me:

V is for Vision:
The heart surgeon's vision of how Oliver's heart should look,
My mother's vision of what it means to be part of a family,
The vision that allows me to see my children, and my husband and the natural world around us.

W is for Windows:
The windows in my hospital room while I was on bed rest.

X is for X-ray:
I know, there are not very many other words that start with X, but truly,
I am grateful that the medical staff at the Children's Hospital of Wisconsin could wheel a portable X-ray machine into Oliver's room, cover his little boy parts with a lead shield and then take a peek at his lungs, and his feeding tubes and the wires that eventually twisted his sternum shut.

Tuesday, November 24, 2009

Saturday, November 21, 2009

Tuesday, November 17, 2009

Friday, November 13, 2009

I like...


...ice cream!

Tuesday, November 10, 2009

for Margaret


Per your suggestion, I baked a cake. However, I don't think it will survive international shipping! So, enjoy: banana cake with boiled white icing.

Today

One year ago today, Calvin and Georgia were born and their family was complete. Happy Birthday!

Today, the brother of Oliver's last roommate is scheduled for open heart surgery (yes, that's two brothers with broken hearts). Good luck, Karver! Our thoughts are with you and your family.

Friday, November 6, 2009

one year

One year ago today, I started bleeding in the middle of a bookstore. One year ago, my daughter peppered me with nervous questions from the backseat of our car. One year ago, I entered the hospital for what would end up being the duration of my pregnancy.

Today, I planned to re-visit the bookstore with our whole family to take a picture, but life intruded. Instead, we took dinner to two women in distress and their families: One of them was just released from the hospital yesterday. It seemed somehow proper and fitting: like coming full circle.