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, July 26, 2009

peaches=yummy!

another milestone

Friday, Oliver was sad, very sad, so sad that I gave him Tylenol. Yesterday, on our family road trip, I looked in his mouth. I'm glad I gave him the Tylenol because his bottom right front tooth had broken through. I'd take a picture, but I don't think my camera can focus that close up.

Wednesday, July 22, 2009

Developmental Follow-Up


Papa took Oliver back to Milwaukee yesterday to have his development assessed.

He's still 27", 15 # and has a 17.5" head.
He tests on or about 6-7 months for his cognitive, fine motor, gross motor, and expressive language (talking) skills. He tests at 5 months for his receptive language (understanding) skills because we're not sure he recognizes his name. Of course, it might help if we consistently called him by his name instead of the panoply of nicknames he's used to hearing.

They acknowledged that he has a mildly odd-shaped head and suggested we take him to see a head doctor (cranial-facial surgeon). The doc will measure the little lover's head and determine whether and how to re-shape the kid's noggin.

The developmental team also concluded that Oliver is super tense and favors his right side. He scrunches up his shoulders and keeps his head cocked to the left and turned to the right. Now, we also get to visit a physical therapist.

We're also supposed to encourage Oliver to sit back and relax instead of sitting up straight. We tried yesterday, honestly we did. He was having none of it. He wants to be up and going. He does not want to relax. He wants to chase his toys and explore the house. Hopefully the physical therapist will be able to help him overcome his right side preference....although I think it just might take evening out his head shape to get him to balance his head properly.

standing up


No, dad's not helping out.

pulling up

video

Monday, July 20, 2009

there must have been a miracle

Oliver's little buddy who has struggled so much went in for surgery today. The doctors planned to do the second of the three operations required to fix his heart before attaching the mechanical heart (I think its called a Burlington heart). After they completed the Glen, the baby's heart rate dropped to normal. All of his vital stats normalized. Said the doctor to baby boy's parents, "There must have been a miracle back there." "Yes," I agreed when I talked to his mom a few minutes ago, "and, soon, you will get to rock that miracle to sleep."

I almost wish I were going to Milwaukee with Kevin and Oliver tomorrow, so I could give little buddy's mama a hug.

Thursday, July 16, 2009

milky, milky

Kevin sent off the third and final shipment today. Grandtotal: 117# of milk sent to the Mother's Milk Bank. Not bad, if I do say so myself.

Let's see, I collected the milk over a 2.5 month period. So, by extension, I would have produced 560# of milk over the course of a year. In comparison, 1904's world-record-holding COW produced 620# of milk in just 7 days. As far as I can tell, the current record holder produced 75,275# during calendar year 1998.

Wednesday, July 15, 2009

little buddy

One of Oliver's little buddies is not doing weel. He's at the top of the transplant list, but his mom says the doctors are talking about putting him on a heart machine to stabilize him.

He's already completely sedated. Even in that state, his mom says his heart starts racing and his blood pressure shoots up if anyone talks to him or touches him. He can no longer even tolerate a gentle head rub, which he used to enjoy.

I've been holding Oliver more lately.

cardiology appointment, part ???

Monday, Papa took Oliver to his cardiology appointment. Here's the update:

Meds:
diuretic down to once a day.
heart medicine still 3x daily.
antacid still 2x daily.
Growth:
6.9 kilos (15 # 3 oz)
68 cm (27")
Heart:
Echocardiogram looked better than last time.
Lungs:
X-ray scheduled for his next visit.
Next appointment:
September

Wednesday, July 8, 2009

second shipment

Tuesday I sent another 55 # of milk off to Colorado. The milk bank pays for shipping. Out of curiosity, I asked how much shipping cost. Without an account, sending a 37# box overnight costs around $150.00. I'm glad the milk bank pays the shipping, but I would have paid just so I didn't have to face the task of thawing and disposing of all of that milk!

Saturday, July 4, 2009

bad night

This evening, I lay down with Oliver in our bed as he fell asleep. Then, I watched him sleep and I cried. I feel so frustrated that I cannot protect my son. I will never be able to tell him, "I won't ever let anyone hurt you," because, in all honesty, I already have and I will do it again. I will hand him back over to the surgeons who saved his life once in the hopes that they can do it again, when the time comes. But, oh the pain for him. And he's such a sweet little baby-so soft and gentle.

Friday, July 3, 2009

Oliver may no longer...

...sleep on our bed. Tonight, I put him down before he fell asleep. He rolled back and forth and back and forth and then over and over and almost off. The little stink-pot.

He's also started pulling his little legs up underneath himself while he's on his belly. I sure hope he figures out how to crawl soon. It is clear he wants to explore. His whole body will strain towards an object that's just out of reach. He'll whine and cough until someone helps him get the object in question, mostly cough. Big sister got the same way before she figured out how to locomote. As soon as she figured out how to get around, the crying got a LOT less frequent.

Wednesday, July 1, 2009

Oliver likes...


...these Teddy Bears.

(recognize the seat, Aunt Jane? Big sister liked this seat, but Oliver LOVES it.)