Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Congenital Heart Defect Awareness Month

February was congenital heart defect (CHD) awareness month. Awareness campaigns, statistics, and information were everywhere. So, I decided not to write about heart defects in February.

Okay, I didn’t decide so much as not get around to it in time. But, never mind about that because in our little world, every day is CHD awareness day. I thought choosing a random day to write about it would have a bit more impact, make more sense in relating how CHD affects our lives.

We talk often about Charlotte being a gift, her results from surgery being exceptional, and the blessings we’ve experienced. That’s not just our perception. It’s the cold, hard fact.

Congenital heart defects are the leading cause of infant mortality in the United States. CHD affects 1% of all newborns in the U.S. Truncus arteriosus is rare among these–latest CDC statistics, 0.72 live births in 10,000 have TA. That’s around 300 children each year. Consider that Prentice, the hospital where Charlotte was born, delivers more than 10,000 children each year. and you can begin to get a sense of how few children are born with this defect.*

A recent-ish study demonstrated that truncus arteriosus is one of the most expensive hospitalizations of any defect. An average neonatal stay is $192,781. Average hospital stay is around 21 days.* (Recall that Charlotte’s first stay was 49 days; she was above average even then!)

And, the final stat for tonight: 90% of newborns survive their first repair. The degree of complications after that surgery is hard to track, I think. It depends on how much damage the heart suffered prior to repair (for Charlotte, minimal, thank goodness), what other underlying medical issues are there, and (I think) each child’s individual constitution.

Those are the CDC stats, the numbers that parents seek out when they first hear those life-changing word, “The ultrasound shows…” After that other numbers take over, ventricular performance, pulse ox, weight, medicine dosages, food intake, months to next surgery, etc.

You’ve read our numbers for the past five years. So, I’ll end with our latest stats.

First, the one Charlotte would like reported–she lost ANOTHER tooth on Monday, bringing the grand total of lost tooth to five. Second, when we met Charlotte’s new pediatrician yesterday, we found out her latest “key” stats: Charlotte is 47 1/2 ” tall and weighs 46 pounds. She’s tall for her age and thin. (Duh, her tights fall down all day.)

Charlotte’s new pediatrician is in partnership with my high school friend who I have promised I will not again call “Danny” in the office. Old habits die hard! We loved meeting Dr. Mitchell. And we look forward to seeing if we agree with Dan that she is “the best doctor in the universe.” So far, so good!

*Data from CDC.gov and NMH.org


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Feeding Clinic Visit: Drug-induced Munchies (legal, of course)

Philippe and I took Charlotte to Children’s Hospital of Wisconsin on Thursday for a meeting with the Feeding Team and for Charlotte’s PIE (patient in-patient evaluation) in preparation for our January or February in-patient stay.

Weight: 13.6k (30.6 lbs).
Height: 3 feet 2 inches tall!

A year and a half ago Charlotte was barely on the growth chart. Now she registers 95th percentile for height (97th if we were to adjust for gestational age).

The nutritionist, psychologist, and SLT were happy with Charlotte’s progress. According to the food journal that I did last week, she is taking 90% of her calories by mouth. They still thought that an in-patient stay would benefit Charlotte and help us get her off of the g-tube completely. We asked a lot of questions, the most important of which (for me) was “Do we really want to put a healthy heart patient in the hospital during the height of cold & flu season?” I didn’t really get a response to that and we moved on to other things.

Next we saw the GI doc. She started our visit by looking at Charlotte’s chart and saying, “She’s 90% there and we’re talking about a January admit. Are you sure you want to put a healthy heart kid in the hospital when the sickest kids in Southern Wisconsin will be here?”

Finally, I thought, someone who hears and understands my concerns!

Dr. B. went on to say that she would like to try switching Charlotte’s antihistamine (currently Zyrtec) to something that will give her the munchies (I can’t pronounce or remember it). She thinks that this new medication will help Charlotte wean herself off of the g-tube. Dr. B. is going to consult with our pediatrician (since she prescribed the Zyrtec) to get the Rx changed.

So, we’re waiting for the munchie-inducing prescription and NOT checking into the hospital in January.

Despite my clinical report, I’m jumping for joy!


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Gold Star For Charlotte

Do teachers still give gold stars for 100% scores? Well, Miss Charlotte earned a gold star today. She drank 100% of her Pediasure. No tube.

Other news–yesterday’s weigh in gave a weight of 13.7k (30.25 lbs). Per the pediatrician’s scale, that is a full half pound more than she weighed 2-3 weeks ago. We go back on 9/29 for a flu shot and weigh in. Stay tuned.
By the way, did you ever wonder what Charlotte is doing while Mommy is blogging? I snapped this about 10 minutes ago.

(Daddy, this one is for you; your last glance before bedtime.)