A Broken Heart

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)
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)
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, October 20, 2010


Today, I was chatting with three other women, one of whom is expecting her first child, when the second woman, mother to four children, stated the oft repeated adage: "Oh, don't worry if your child has special needs.  You will just love them more for it."

 "No," I said.  "I do not love Oliver more because of his special needs."

"I love him the same as his sister...but I resent him more."

When the mother of four challenged me on this, saying, "Oh, you just mean you resent his problems," I let her have it again.

Oliver's problems are not something separate from him.  There is no Oliver over here and Oliver's heart defect over there.  It is all wrapped up in one (admittedly adorable) package--and I do resent him sometimes.  I resent the time I lost with my daughter in order to care for my son.  I resent the massive resources devoted to healing this one baby.  I resent that I couldn't take care of him for the first months of his life.  I resent the constant fear that he will die during his next surgery.

Yes, I love him.  Of course I do.  I love him and I want him and I am glad he is my son.  But, there is resentment and anger, too, and he is in the cross hairs.  

Once my friend realized what I was saying, she was horrified.  "You would never want him to know that,"  she challenged.  Of course, I wouldn't.  I also would never have wanted him to be born with a broken heart.  But the world is a broken place and Oliver is a smart boy:  he will figure it out someday.  I just pray that he knows how much everyone in his family loves him when he figures out how much I have struggled with this.

I hope the expectant, first time mom was not too disturbed by my vehemence.

Tuesday, October 19, 2010

bottles, part II

Someone asked me how I planned to take away Oliver's bottles.  This is something I've thought a lot about.  First some background:  Most of the literature I've read recommends phasing out bottles by the time a baby is 18 months old--entirely phasing them out.  The little flyers we get from the doctor's office when I take my kids in for well child checks are adamant on this point.  No baby should get any bottle after 18 months.  period.  But, these little flyers do not mention nursing.  I have never read anywhere that babies should stop nursing by a certain age and I know many women who nurse their babies until they are much older than 18 months. 

Now, my thoughts:  1) Neither of my kids were able to nurse.  Holding my babies while they are drinking their bottles is the closest we get to nursing time--and I want to keep that time as long as I can.    2) My son is not typical.  While I try to pretend he is, well, it just isn't true.  He didn't get his ng tube yanked and start feeding himself until he was nearly 2 months old.  He wasn't interested in solid foods until just recently.  I get it: we're going to make these transitions slower than a typical kid.  3)  My son is skinny.   If I can pump in a few extra calories from a bottle while we snuggle, I'll give him the bottle.  I want to fatten him up for his next open heart surgery: make sure he has something in reserve. 

We don't always give Oliver both bottles.  Some days he falls asleep before his nap-time bottle.  Some days he demands his naptime bottle mid-morning.  Some days, we give them to him, but he doesn't finish them.  I think our plan is to offer him real food whenever we sit down to eat and whenever he acts hungry.  We should probably offer him milk in a cup then, as well--we're not so good about that.  After he eats some food, we'll offer him the bottle--until it becomes clear that he is not interested. 

I think that's how we did it with my daughter.  We might have substituted a sippy cup of milk for the nighttime bottle towards the end of things.  She's now 5 and not interested in bottles at all. 

I will say, I am glad Oliver came home from the hospital sleeping through the night.  He has gone down at 6-8 just about every night and slept until 6-8 in the morning, so we don't have to deal with breaking a night time bottle.  I remember that took a lot of will power on my part and a lot of tears on my daughter's part....but the adults in the house needed the sleep, so my husband and I put in several long nights tense in our bed while she screamed herself back to sleep--wanting her bottle.

Thursday, October 14, 2010

two bottles a day

Yup, at nearly age two, Oliver still takes a bottle--two of them to be precise, one before nap time and one before bed.  I can hardly believe my reluctant eater a) gets the vast majority of his calories from real food and b) wants the two bottles he gets. 

I can remember waiting for him to fall asleep, so I could slip a bottle into his mouth when he was younger--he was so uninterested in eating that he would only do it while unconscious. 

I feel grateful  that he never needed a G-tube.  I feel even more grateful that he finally wants to eat normal stuff.

Tonight he was very interested in our tuna melts and juice (aah-juh).  He ate nearly a full bowl of oatmeal and half of a scrambled egg for breakfast and chowed down on lentil stew for lunch.  Then there were the snacks: chili-lime mixed nuts (spicy!!!), yogurt, a cookie, pepper jack cheese, sesame crackers, and dried blueberries. 

I think I might just go and cry with relief.


Tonight, while giggling with Oliver, my world turned momentarily inside out.  Oliver was running back and forth from his dad to me, asking to be tickled, snuggling on our laps, screeching with laughter, when an image of his chest open flashed through my mind.  I kept giggling and tickling and Oliver kept running and snuggling--while my cheeks started to tingle and my shoulder blades pulled back tight. 

Wednesday, October 6, 2010

problem solved

Oliver loves ah-nuhs (knobs).  Problem: our deadbolt (the one he calls a football) is too high for him to reach.  Solution: laundry basket. 

Saturday, October 2, 2010

Oliver loves...

...hot dogs. He ate 1.5 last night. We rarely eat them, so he was first introduced to them at some fourth of July functions we attended--and he fell in love. For the last few days, as he's played in his sand box (which he also loves--particularly filling a bowl with sand and then dumping it down his front), he's periodically come over to me, pointed at the BBQ and said, "hot dog." So yesterday, we bought hot dogs, chips and root beer and invited Oliver's Aunt Mary over for dinner.

...and a good time was had by all.

Oliver's medical appointments

Ashlea just asked me when Oliver's next appointment is. Well....it depends on what kind of appointment you mean. For general consumption:

Oliver sees doctors in Madison (close to home) and Milwaukee (1.5 hours away).

Oliver's pediatrician is in Madison... We see her every 6 months (just like any other kid). I think we'll go in next for Oliver's 2-year-old check-up in December.
Oliver's cardiologist is in Madison... Right now, we see him (I love him, by the way) every 6 months. Oliver gets his echocardiograms in the clinic in Madison, as well--unsedated--which requires a lot of skill and a lot of patience on the part of the echo-techs. Our next appointment there will also be in December, on the 6th.
Oliver's developmental team (occupational, physical, and speech therapists as well as a pedicatrician who specializes in kids who had a rough start in life) is in Milwaukee... We see them every six months. These visits are non-stressful from a medical standpoint....there is no life-or-death-or-open-heart-surgery about them. They're more like well-baby checks. We won't go back until March 28 of next year.
Oliver's surgeon and the rest of the surgical team is in Milwaukee. We don't know when we will see them next. Our cardiologist is betting we have till summer 2011. Even then, we don't know whether Oliver be able to buy time with a heart catheterization or whether he'll need full-blown open-heart surgery.

We don't see any other specialists. No nutritionist. No gastroenterologist. No cranio-facial surgeon. No nothing. I hope it stays that way.