What You Need to Know about Congenital Heart Defects (#CHDAware)

Congenital heart defects are the leading cause of infant mortality in the United States. CHD affects 1% of all newborns in the U.S. and are responsible for more deaths in the first year of life than any other birth defect.

Truncus arteriosus is rare among these—according to CDC statistics, 0.72 live births in 10,000 have TA. That’s around 250 children each year. Consider that Prentice Women’s Hospital, the hospital where Charlotte was born, delivers more than 10,000 children each year. and you can begin to get a sense of few children are born with this defect.

On the left, a normal heart. On the right, a TA heart. note that there is no definition between pulmonary and aortic trunks (what is purple on the right is blue or red on the left, indicating oxygenated/de-oxygenated blood mixing.)

A 2014 NIH study demonstrated that trunks arteriosus is one of the most expensive hospitalizations of any defect. Depending on length of hospital stay and complexity of post-operative complications, a TA repair can cost as much as $425,000 (high end is a greater than seven day stay). Average hospital stay is around 21 days. Charlotte’s first hospital stay was 49 days; she was above average even then! Charlotte’s most angioplasty (2012) that required only one overnight stay, came in at more than $66,000, so I’m guessing that her neonate was much higher than average.

90 percent 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.

Parents seek out other parents, and in 2005 that was hard to do.  While I try to avoid medical advice and information on the internet, I relied on it for reflux support for years and I am proud that this blog has given it to other parents facing Truncus Arteriosus and other CHDs.

I rarely blog any more since Charlotte’s Journey Home was meant to share her ups and downs with the “Charlotte Watchers.” We are the lucky ones; Charlotte’s heart is the thing. Her feeding disorder is far enough in the rearview mirror that she no longer remembers it. She has minimal neurodevelopmental complications. In fact, the neurocardiologist who once marveled that she was bilingual at 9 years old would probably faint to hear that she speaks three languages now, and I mean really speaks them, and maintains a straight A average in honors classes at her high school (humble mom brag).

This week, I blog for awareness and celebration. I celebrate other CHD Parents like France Paul and Tommy Riles who have taken inspiration from their children’s medical difficulties to raise awareness and money for children born with congenital heart defects. I celebrate my cousin Lynne whose CHD is the last thing that defines her–she’s defined by the life-changing school for autistic kids that she and her family founded in Richmond, Virginia (Yeah, she’s my major hero.) I celebrate Ann and Robert H. Lurie Children’s Hospital of Chicago makes a difference every day for parents and kids facing CHD, both the facility and the US News & World Report-rated Cardiology team. And I celebrate Charlotte who reminded me that she is 15 3/4 today. She truly is a rare bird.

mended heart

#CHD Aware Parenting

A few years ago, I wrote about the Ripple Effects of Living with Congenital Heart Defect. It is a glimpse behind the curtain at the multiple medical tangentials that came along with CHD and have made Charlotte’s journey so much different than that of most of my friends’ kids. Sure, your kid might have scoliosis and braces, but they probably didn’t also have a g-tube and plagiocephaly and a paralyzing fear of needles. I’m not whining about having it worse than you. Just stating the facts: We’ve had it different and the baseline of that difference is CHD.

Yes. Grown and almost grown women play in the snow. Meet Blobby Barnes, named after one of C’s favorite MCU characters because they both only have one arm.

Like almost everything I’ve written, that post was about Charlotte, as witnessed by me and Philippe. It was for the “Charlotte Watchers,” as I’ve long thought of our friends and family (in a direct homage to my late dear friend Jen Perlman).

What I’ve never written about, even in my journal, is how the witnesses felt. I can’t say that Philippe and I ever talked about what we felt for ourselves, at least not as the moments unfolded. Our singular focus was to maximize Charlotte’s success—at all levels. And, I don’t remember anyone asking us, at least not after Charlotte came home from the hospital in June 2005.

Looking back, I can honestly say that I spent the first five years of Charlotte’s life sandwiched between joy and grief. Joy that she was alive and finding a way to thrive and grief for all we would never have—siblings for her, a babyhood full of the regular stresses of messy eating and muddy crawling. The condiments on the sandwich were loneliness, fatigue, and anger (the last was really perimenopause, but that’s a story for another blog. In other words, We’ve discovered since then that Charlotte’s her medical anxieties were induced by childhood medical trauma. Turns out I have suffered my own version of medically induced PTSD. For what it’s worth, I’m not self-diagnosing; three different psychologists have concurred and my PCP agrees.

This, then, is one of the other ripple effects of living with congenital heart defect—the isolation of the parent, sometimes even from each other, and the scars that linger long after the danger is gone. It’s harder to write about because it’s more personal, deeper, and more painful. It takes more introspection and requires a leap of faith in my readers. It defies the “live in the moment” axioms of our culture and the “get over it, stop thinking of the past” of my closest circles.

Plus, there are the double fears that no one cares (the cute baby is the focus, right?) or that the “Charlotte Watchers” will be offended that I felt loneliness. “I was only a phone call away,” I can imagine hearing. “Yes,” you were, “with your toddler and your six-month-old, your fulltime job, and I just couldn’t look at all that happiness. Or maybe I didn’t want you to see the messiness of our lives.” All those people who turned up for my father-in-law’s shiva in 2006, having never met the man, probably would have offered any support we needed for the baby they cooed over. But shiva provides a ritualized opportunity to show up; a sick baby just doesn’t.

If the Great Pause has taught us anything, I think, it is to ask for help. Maybe even to look differently at our friends and neighbors and offer help before we’re asked. While mothers have long suffered isolation and overwhelm, to varying degrees, The New York Times just recognized that for the first time with a special section yesterday called, “The Primal Scream.”

I hope that parents thrust into heart battle will know they are not alone, that they have a community of other heart parents. And that more importantly, they have a community of the people who loved them before that ugly ultrasound.

It took me years to realize that this blog has been a witness’s blog. Every time someone (okay, mostly my mom) has said, “You should turn your blog into a book,” I’ve struggled with how to do that. What’s the angle? Most of the blog is about the feeding issues, not the CHD, but that’s not the defining element of our lives. What’s the “so what”? There is no tragedy here (folks, tragedy and recovery sells), and I have no complaints about that. Even after a book proposal workshop with one of my favorite memoirists, Esmé Weijun Wang, I’m still stumped.

During this #CHDAwareness week, I wonder if it’s about the weight on the witness. And if I’ll ever have the courage to tell that story.

Corashopesanddreams.org graphic: Every 15 m

Want to know more about how CHD affects American children? Visit the American Heart Associationhttps://www.heart.org/en/health-topics/congenital-heart-defects.

Attack of the Annual Cardiology Checkup (#CHDAware)

It sneaks up on us a little more stealthily each year. Days and months pass and the fact of heart warfare lies beneath the surface of our lives, dormant, docile, and unthreatening. Ever since Charlotte’s third surgery, we’ve lived with Dr. Backer’s words, “You’ll likely never need another open-heart surgery,” as though they were a magically already fulfilled prophecy and a protective shield rolled into one.

Basically, every 365 days or so, we schedule Charlotte’s cardiology check up, Charlotte has an echocardiogram and an ECG, Dr. Hauck gives us a thumbs up, we get lentil soup at Sultan’s Market or cookies and tea at Colectivo, and we go home.

Covid-19 delayed our annual outing this year and there were no treats afterwords. 365 days stretched toward 500 days. It wasn’t until Charlotte had a minor abnormal fluttery feeling in her heart that either of us remembered to schedule her check up.

Aside from the date, November 3, it started as a normal appointment. Tensions were a bit high because of election uncertainty, but not because of the doctor. The echocardiogram took longer than we remembered it taking, but sometimes it has been hard to capture certain views of Charlotte’s right pulmonary artery. When the technician left the room to get the cardiologist who specializes in echo reading, I began to worry.

Charlotte nearly panicked. This was not our routine and didn’t fit the plan. I tried to play it down, “She just needs help to get a better view. She just wants to make sure she has everything Dr. Hauck needs.” All the while, I was gagging on the memories of that day in January 2005 when a sonographer left the room to get a colleague,”Just to help me get a better view.” We knew in that moment that something was terribly wrong.The blank space between her departure and the doctor’s explanation were an excruciating eternity of imagining the worst without coming close to what he might say.

Sitting across the room from my daughter, who was already stressed out because it was Election Day, I concentrated on my game of Threes to distract myself. She wasn’t having any of my comfort, so I stopped trying The bass drum of my heart beat in my ears. My brain started its internal doom scrolling. I’ve gotten pretty good at choking back my tears to focus on her welfare, so I thought I had it covered.

Spoiler alert: Charlotte is fine. Sort of. She’s as fine as a young adult living with Truncus Arteriousus Type 1 can be. But the blinders have been ripped off, the protective shield is punctured, and we won’t skip blithely through the next 365 days.

The velocity in Charlotte’s right pulmonary artery is trending ever-so-slightly in the wrong direction, indicating that the blood flow is blocked somehow. The echocardiogram was, not surprisingly, inconclusive. Charlotte’s heart, it seems, is too close to her chest cavity for the wand to pick up the sound and draw its magic picture. This proximity also gives me one of my favorite gifts–her loud, strong heartbeat that I can often hear in a very quiet room if we are sitting close enough. But it can make diagnoses difficult.

In a perfect world, we’d go next for an MRI with contrast so the doctors can get a better look. I’m sure you know by now that life with a CHD is not and never will be a perfect world. Among other things it has created sever medical anxiety so anything with needles is off the table right now.

We’ll be heading back in June for another echocardiogram and hopefully a better picture. If the numbers stay flat, we stay the course and go back every six months. If they continue to creep downhill, we’ll look towards more diagnostic imaging.

In case you’re not adept at reading between the lines, this is the beginning of Charlotte’s next journey toward an intervention of some kind. If Dr. Backer’s magic force field is intact, we’ll be talking about some kind of catheter procedure. That is the only possibility we can manage or think about right now.

Truncus arteriosus is docile and dormant no more. Welcome to #CHDAware week, or just another day in our lives.

To learn more about congenital heart defects and how you can support research visit:

Who Will Hold My Heart? A Heartiversary Tale

I was more likely to play school than to play house. Had I imagined motherhood, it would not have begun with cardiac surgery. Or with wires, tubes, a ventilator, medicines, oxygen, daily x-rays, and ultrasounds. I would not have been on first-name basis with my daughter’s cardiologist and her first babysitter would not have been our favorite PICU nurse. My imagined life with a newborn would not have included pumping breast milk eight times a day while a machine fed my baby. Or sneaking into her room to give her medicine and food via a tube while she slept through the night. Or fighting with a one-year-old get her to drink half an ounce of milk. Most of all, however, I think I could never have imagined that it would take nearly a year for me to fall in love my child. Or, that once I did that love would be the fiercest and most complex emotion I’ve ever felt.

Continue reading

Happy Heart-a-versary to My Heart Warrior

Charlotte’s eleventh birthday was last Monday, though the celebrations began on April 30. By the actual birthday, Charlotte had had a slumber party (with cupcakes), a special date with Dad to see her Red Sox beat the White Sox (with ice cream), and fancy sushi with both of us (with ice cream x 2). On Monday, she had, as she has for at least 6 years, fried cod with chipotle mayonnaise and a homemade chocolate cake. The only thing she didn’t get was her annual birthday letter on the blog and a present from me.Today was a regular Monday. So regular, in fact, that I nearly forgot that it was Charlotte’s heart-aversary.

 

Eleven years ago today, Charlotte had her first open-heart surgery.  As I wrote in 2011:

“Today, we pause to celebrate–a bit more somberly perhaps, but with equal amounts of joy–Charlotte’s heart-a-versary.

 Six years ago today, we handed our teeny-tiny baby to the anesthesiologist. I remember him as being quite tall and having an Australian accent, but I was post-surgery myself so am an unreliable witness. He cradled her in his arms and we all walked to the operating suite. There we gave our baby, our hopes, and our trust to the great good team of Drs. Mavroudis, Backer, and Stewart. On the way to the waiting room, Philippe collapsed in my arms.
We waited. And waited. And then Dr. Mavroudis came to us smiling, telling us that Charlotte was back in her room and the nurses were setting up her meds. I think that was the first time we breathed all day.”
Last year, just three months after her third open-heart surgery, the significance of her heart-a-versary was not lost on me:

“As I made my coffee a few minutes ago, I was struck by the date. Ten years ago today, I clutched my coffee in a paper cup as Philippe and I awaited hourly updates from Julie about our tiny baby daughter’s first open heart surgery.  Goldman-R1-048-22AThe day had begun excruciatingly early for a mom recovering from a C-section. We arrived at dawn at the hospital and, shortly thereafter, handed our bundle of seven-day-old love to a very tall anesthesiology fellow who promised to care for her as if she was his own. We turned to walk down the stark white hall of the surgery suite towards the waiting room and Philippe nearly collapsed in my arms, overwrought with concern and fear.

Today, Philippe was, as usual, up with the sun. I’m savoring my coffee on the front porch in my favorite kitty mug waiting for him to come home from doing some early morning errands. Charlotte is upstairs, sleeping or reading. I don’t know, I haven’t seen her yet. I do know that she is safe, sound, and healthy thanks to the doctors that cared for her on May 16, 2005–Drs. Carl Backer, Gus Mavroudis, and Bob Stewart.”

We will never stop being grateful to the doctors and staff at Lurie Children’s. And we’ll never cease to be amazed when we hear another parent’s gratitude–as we did tonight when an acquaintance told us that her son (who has an 18-year old daughter) had his CHD repaired at Lurie Children’s. Every now and then, the enormity of what might have been washes over me. More than once I have been reduced to sobs–the tears that never came on May 16, 2005. The tears I couldn’t cry because I wouldn’t let myself think about what was really happening in that surgical suite. The tears Philippe shed, in full knowledge that the outcome might have been completely other.

We are so blessed to have this magnificent facility in our backyard. It was with this gratitude that Philippe, Charlotte and I, along with Charlotte’s first babysitter, Karley, and her Chicago grandmother, Jenny, and a host of other friends and friends of friends participated yesterday in Move for the Kids. Team Charlotte has raised $2,787 towards our $5,000 goal. In honor of Charlotte’s 11th heart-a-versary, please join us in supporting Lurie Children’s by supporting our walk. You can still donate to Team Charlotte (just click the link).

No birthday letter this year, but as always, we love you, Charlotte. May you continue to grow from strength to strength.

 

 

On the 366th Day We Rejoice, A Cardiology Update

For most of the year, we can ignore that Charlotte is a heart patient. She keeps up with her friends, grows so much that we forget the terrible “failure to thrive” days, and seems about as regular as the next kid.

That was different last year, of course, since she had to take a break from her regularly scheduled awesomeness to awe us with her post-heart surgery resilience. Charlotte recovered beautifully and returned to regular activities on schedule. She trained for a 5K and took tennis lessons. Once her surgical wounds had healed, she moved on. Sort of. If we didn’t talk about the scar. (That’s another story for another day. Suffice to say that a preteen girl is self-conscious about a new scar.)

Then she had her six month check up and the scar began to fade. In the past few months, the surgery has become an anecdote. “Remember when I was mean because I was taking Dilaudid?” “Remember what I said when they removed my breathing tube?” “I didn’t mind the hospital so much. I got to have pudding for breakfast and got lots of presents.”

Yesterday we were reminded, as we are each year, that heart surgery isn’t the stuff that normal childhood memories are made of. It’s real. It’s traumatic. It’s serious. But, it also gives us the chance to visit with the excellent Dr. Young and the incomparable Elizabeth Capella, LPN.

perfet heart_031616

I’ll spare you the thousand words–what you see here is a perfect heart. Or at least as perfect as Charlotte’s mended heart will get. Her bloodflow velocity holds steady at 2.5 (normal is around 1.8; this elevation is to be expected given her conduit). She has no evidence of stenosis or other complications And best of all, while Charlotte was terribly uncomfortable with the idea of a male sonographer, she took a deep breath, focused on the Harry Potter movie and let Mr. Peng take her pictures.

We’re back to annual check ups.

Team Charlotte, gear up for Move for the Kids 2016. So much to celebrate. Charlotte dares you to RUN it with her. Click to join Team Charlotte, or donate if you can’t participate.

MFTK 2015

 

Do You Know the Correlation Between CHD and Brain Injuries? (#CHDAware)

While Charlotte was in hospital last February, one of her PICU nurses, Carrie Alden, from 2005 stopped by. Carrie had recently returned to Lurie Children’s cardiology department from an outside position and when she saw Charlotte’s name on the CCU in-patient list she had to stop by. Of course she wanted to see her favorite patient, but she also wanted us to meet Dr. Bradley Marino, a pioneer in the subfield of cardiac neurodevelopmental outcomes.

He was clearly surprised and delighted that Charlotte attends, and excels at, a bilingual school. Chills ran down my spine when he explained: It seems that children with CHD suffer “neurodevelopmental and psychosocial impairments due to brain injuries related to their congenital heart defects.” These brain injuries don’t come from catastrophic incidents (this is not an episode of Code Black, it’s a “mommy blog”); they come from low oxygen levels and poor brain blood flow, as well as issues related to medical and surgical treatments.

Charlotte’s oxygen levels have always been above 90%, usually above 95% and most typically between 96-98%. We knew this was good because the nurses and doctors were always happy about it. And since they were happy, we never thought to ask why they were happy or what the problem with a low sat level might be.

Here’s what we didn’t know:

75 percent of these patients are at risk for language impairment, Attention Deficit Hyperactivity Disorder, executive dysfunction, visual processing issues, fine and gross motor problems and behavioral and emotional difficulties. More than 30 percent of these children require remedial services in school including tutoring, special education, and physical, occupational and speech therapies.

Sometimes ignorance really is bliss, I guess. Had I known, I would have worried. Instead, we followed the advice of a friend who had a friend with super-premies and had Charlotte assessed when she was 7 or 8 weeks old, immediately getting her into PT and feeding therapy. We panicked when a teacher (incorrectly) thought Charlotte had developmental or behavioral issues and sought a full battery of neuropsych, OT and developmental assessments. And then we followed the advice of the neuropsychologist and had her assessed again in third grade.

Turns out she has minor visual processing issues (that she seems to be outgrowing) and some fine motor challenges.

If Charlotte had had serious problems, we’d have been on top of them. But not because our cardiologist (who we adore), our surgeon (ditto), or any medical staff (again, ditto), suggested we do these tests and interventions. Because we followed the advice of another mom (it was well-reasoned and cost me nothing to follow), and the intuition (if flawed) of a master teacher.

That said, I’m am beyond grateful to the universe from sparing Charlotte further challenges related to her broken heart. And I’m beyond thrilled that Dr. Marino is heading the new (as of 2015) Neo-Heart Developmental Support Program at Ann & Robert H. Lurie Children’s Hospital of Chicago. I urge you to read about his great work, and a lovely patient he has helped, here. (All the quotes in this post come from this article.)

No CHD parent can say it enough: As more and more of our children live longer lives (my cousin is in her 50s), we need to make sure that they lead the fullest lives possible. The answer, as always, is research and outreach.

We are #CHDAware.

Flashback #5: Bringing Her Home (#CHDAware)

Sometimes the words of a song are just the words of a song. A beautiful haunting lyric that draws you back over and over, but still just a song. Then, sometimes the same song hits you differently. Tonight, listening to Alfie Boe sing “Bring Him Home,” I felt the song as only a parent can. And as I felt the song, Charlotte laced her fingers through mine and whispered, “Chills.” Jean Valjean prays to God to bring Marius home, to let him live. Truly, those are the only thoughts that go through a parents mind when their child in on the operating table. Any operating table. I don’t care if the general anesthesia is for ear tubes, a tonsillectomy, a heart surgery or a lung transplant. When the doctors wheel your baby away, and you have no control….that’s the sentiment, the lament, the prayer.

And when they say to you, “Okay, you can take her home today,” you cry precious tears of relief. And realize how very lucky you are to hear those words, and no other words.

Last February 17 we heard those words. Yesterday, we were too busy jamming to Gloria & Emilio Estefan’s excellent and joyous On Your Feet to even think about it. Chills indeed.

So, for “throwback Thursday,” I give you Flashback #5: February 17, 2015:

Current StatusSitting in the living room playing Katamino waiting for sushi to be delivered.

Medical UpdateSitting in the living room playing Katamino waiting for sushi to be delivered.

But seriously, Charlotte was discharged around 2:30 today. The day consisted of removing the central line, which was a bit difficult but not nearly as traumatic and traumatizing as any other removal has been. In between crying that she couldn’t do it, Charlotte breathed (deep breath in, breath out “sushi”), and  giggled at Despicable Me 2. Once the central line was removed, she had to lie flat-ish for about 30 minutes. Then we went downstairs for a chest x-ray.

After the chest x-ray, we waited for the prescription delivery and to get the last peripheral IV out.  That last thing is what took the longest, and what made me the most proud.

Charlotte hates having things put in or taken out (can you blame her?) and she also dislikes having medical teams hover around her.

So, she insisted on taking the PIV out herself. Her excellent RN, Katie, sat on one side of the bed, Phil an I on the other. While Katie walked us through the discharge instructions, Charlotte worked on the tegaderm surrounding the IV. She worked and worked, listening to some Katy Perry and Taylor Swift. She vacillated between “I can’t do this” and “I’ve got this.”  The last little bit was really difficult. Both Katie and then Holly, the APN on duty, helped Charlotte strategize how to approach the tape.

Finally, she got all worked up, “I can’t do this. I’m never going to be able to do this.” Then silence, then “Oh, it’s out.”

She did. The sushi is here. Have a good night, ya’ll.

DSCN1234

Charlotte heads home wearing sweat pants and fancy boots. Best combination ever. (Caption credit: Charlotte)

 

 

 

Flashback #4: What does awesome mean to you? (#CHDAware)

A year ago, Charlotte declared her status to be “Awesome as usual.” Today, 370 days after her third open heart surgery, I can attest that awesome IS usual for her. And by “awesome” I mean causing feelings related to the “dread, veneration, and wonder that is inspired by authority or by the sacred or sublime,” as defined by Merriam-Wesbster. I am awed, truly, by modern medicine. When I think that had I been born with truncus arteriosis type I, I likely would not be writing this blog post, I can’t help but feel veneration for the scientists who dared to dream that they could fix a broken heart. If those surgeons want to think they are gods, well, probably they are at the very least, godlike.

Now for the Flashback: 2/15/2015: Current status: Charlotte says that her current status is “Awesome as usual.” Clearly, her ego has recovered 🙂 She’s weaning herself from all things “i” and spent the morning on a craft project sent by a most excellent pair of twin 10-year olds. They also sent stuffed versions of what Charlotte misses most from home.With Ty Fred and Ginger

 

Medical update: The writing of this blog post was interrupted for…the removal of the chest tubes! Charlotte was a bit anxious about it so we medicated her. The Versed kicked in right after the tubes came out so she is blissfully listening to Taylor Swift right now and telling me how good her lemonade is.

After chest tubes were removed, Charlotte had an x-ray. She needs an echo. With normal results on those two things her central line should come out tomorrow and then we get to go home!

DSCN1216

Let me check out my lung x-ray. I can see the wire around the conduit. Cool. (Umm….no comments about my bed head, please!)

In the meantime, she’s been taking bigger and bigger walks. One big goal was to visit the Founder’s Board Treehouse on the 12th floor.DSCN1220

 

Mission accomplished! Lindsay, the APN on duty today, believes Charlotte won’t remember this visit or photo, so we’ll go again later.

We’re down to Lasix once a day, baby aspirin, pain meds as needed and Miralax. While she will go home with a few meds, nothing is long term.

On a sad note, Bubba’s nose is falling off. We’ve had to call in reinforcements. Introducing “the spare bear.”

DSCN1215Today’s cheery update brought to you by the “Flock of Docs.” That’s Dr. Backer all the way to the left. He’s pretty happy about today’s news!

Flock of Docs

Flashback #3: The Surgeon Smiles, The Parents Breath (#CHDAware)

I’m sipping tea at the dining room table. Charlotte is upstairs–first day of winter break–doing who knows what. I look at the clock: 9:17 a.m., exactly the time a year ago today Dr. Backer made the first incision in Charlotte’s third open heart surgery. It’s been 365 days. Charlotte hasn’t given it a second thought. Her scars will be neatly hidden beneath warm clothes today, and she’s mostly focused on whether she can convince me to go to a toy store. But, I’m sure I won’t stop thinking about it all day. About how lucky we’ve been in her outcomes so far.

 

I thought I’d share our final update from the surgical waiting room because it begins with the most unlikely of images, a smiling surgeon.

February 11, 2015, Update #4: Dr. Backer stopped by about 30 minutes ago, coffee in hand, imprint from surgical cap still on his forehead, and grin on his face.

IMG_1096

Bubba sits on the gurney outside the surgical suite, keeping guard.

 

Bottom line: Charlotte is out of surgery and he is happy with the results. As he was talking, the surgical team was getting ready to bring Charlotte up to the CCU. We should be able to see her in an hour.

If you don’t need details, you can stop reading there!  If you want more, read on:

The doctor replaced her 16mm Dacron conduit and valve with a 22mm conduit and valve. That means that she has a valve the approximate size of mine. He said that the new valve (her last one was placed in 2007) are made better than the old ones. And it is big enough that there is a good chance that a valve replacement, if needed, might be done via catheter procedure. No one can say for sure that this is her last open heart surgery, but this one went as well as can be expected.

p.s. The new valve is still a “piggy valve,” so kiddo will still be able to snort when she laughs.

Sources:

Children’s Heart Foundation Fact Sheet

American Academy of Pediatrics Congenital Heart Public Health Consortium