Flashback #6: Have You Heard Charlotte Tell Her Own Story? (#CHDAware, #TBT)

Charlotte reminded us last night that it is exactly 6 years since her third surgery. So, in honor of her strength and without further ado, my post from February 24, 2015:

“Charlotte’s Story: The Road to a Healthy Heart”

Sometimes I’m so proud of my kiddo, I could just burst. This is one of those moments. She was asked earlier this month (February 2015) if she would contribute a blog post to “Life Inside Lurie Children’s: The Official Blog of Ann & Robert H. Lurie Children’s Hospital.” Despite the month she knew she had planned, she said yes. And she said it without hesitation. We talked a lot about what she’d write, but she didn’t start drafting it until February 14, just 3 days after her surgery. She dictated it to me.

So without further, ado, I invite you to follow the link below to read Charlotte’s Story: The Road to a Healthy Heart. Or, read it below:

*Bonus for reading to the end—there’s a video and you can hear more about our Lurie Children’s experience.

February 23, 2015

Charlotte, age 9, underwent her third open-heart surgery at Lurie Children’s just days ago. She shares her story below in honor of American Heart Month.

Hi. My name is Charlotte, and I’ve been a patient at Lurie Children’s since I was 12 hours old. In January 2005, I was diagnosed when my mom was pregnant with me with a congenital heart defect called truncus arteriosus. I was supposed to be born in June, but I arrived a little bit early, on May 9. I’ve been going to Lurie Children’s for follow-ups my whole life. Continue reading

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:

On This Day….

How often can you say that you know exactly what you were doing on this day twelve years ago?  I can say that every May 16 I know exactly where I was and what I was doing on May 16, 2005.  You see, today is Charlotte’s heartaversary, the anniversary of her first open-heart surgery.

I remember handing the tiniest bundle, all of 5 lbs., to the tallest anesthesiologist you can imagine and hearing him say, “We’ll take good care of her.” I remember thinking how kind it was of him to carry baby Charlotte in his arms, rather than wheeling her away from us. Somehow it affirmed for me that the doctors would see our baby as a person, not just a heart to fix. I remember turning from him and thinking that the hallway leading out of the surgical suite and to the waiting room was the longest, whitest hall I’d ever seen. And, I remember that before I could complete that thought Philippe let out a sob and his knees buckled. I remember catching my husband so he didn’t crumble to the floor. I remember.

I remember Sharon, the attendant in the waiting room, and her concern for us. And guess what, Sharon remembers us. I’m sure that when I walk into Lurie Children’s tomorrow, where she now mans the security desk, she’ll ask how Charlotte is. I remember Julie, the APN, coming to update us. And I remember Dr. Gus Mavroudis walking toward us, pulling off his surgical cap, smiling and telling us that Baby Charlotte was on her way to recovery. I remember.

I remember walking into Charlotte’s PICU room and being overwhelmed by the site of our tiny baby, barely visible on the warming tray, surrounded by machines and covered in bandages and wires, swollen like a balloon from the fluids, eyes closed.I remember Nancy Smith, Charlotte’s lead nurse, telling us what each machine was for, each medicine. And I remember needing the nurse in charge of each of the next few shifts to repeat all that information because I couldn’t remember. I remember rubbing the crown of Charlotte’s head–it’s all we could reach–and wondering if she’d ever come home with us.

I remember all this and more. But I don’t remember the emotions. I channeled my energy into telling Charlotte’s story, never really admitting that her story was my story and Phil’s story, too. I poured my world onto the page and hid behind my camera. I kept myself arm’s length away, maybe trying to protect my heart. I’m working on that now, hoping to put those emotions on the page and turn them, mingled with this blog, into a book that will help other parents.  Why? Because Francie Paul invited me to the most amazing event, the Tillman Foundation’s TendHER Heart Luncheon, honoring mothers of children with complex medical conditions, mothers who got to bring their babies home, and mothers who didn’t. I’ve been grateful to Francie for many things over the years, but for this gift above all. Not only did I find two “heart mamas” to sit with during lunch, but I got to hear the inspirational words of Stefanie Boyce, who not only summed up what each of us had gone through in our unique ways, but who did so lyrically and with grace. If you read nothing else this week, read her essay “I see you, mama: A word for mother’s navigating a different dream.”  Philippe and I have been navigating a different dream. And we’re so grateful that it is interwoven in so many ways with a “regular dream.” Stefanie

In many ways, maybe most ways, it is Charlotte’s story. And it has a happy beginning (she’s only twelve, ya’lll, she IS just beginning). Tomorrow that 21″ long, 5 lb. baby will run in her first track meet (and she’s now at least 5’6″). She’s good. She’s better than good. She rocks.  But, at her request, this blog will only tell her story now with her permission and her review. Otherwise, when I post it will be my story, my journey to being a regular mom.  I welcome your input at any time.

Want to know how May 16, 2005 went down? Click here.

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.

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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.

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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

 

Flashback #2: Partying through Pre-Op to Mend a Broken Heart (#CHDAware))

Every 6 months I go through the heart momma ritual: I brew a cuppa (today it was tea) and dial the cardiologist’s office to schedule our follow up. And today, that phone call topped my to do list. We have every reason to believe that it will be a routine visit, lots of images, and then a lovely chat with Dr. Young. But…no heart mother (or father) ever stops worrying or ever stops bracing herself for that other kind of appointment. In November 2014, we had that other kind of appointment. We expected it, anticipated it, and were still gobsmacked by it. Still angry at the injustice of our kid having to go through this kind of heartache, literally.

Today’s flashback will take you to February 9, 2015 the day before her scheduled surgery.

It includes a tribute to the children who made it clear that their hearts would hold Charlotte’s while she underwent surgery and recovered. I am grateful to them and their teacher every day. (Fair warning: I cried AGAIN when I watched the video.

February 10, 2015: Pre-Op The lead up to the pre-op appointment started in the most wonderful way. Charlotte’s classmates threw her a surprise party. While she was, I think, most thrilled with the gifts (especially an Equestria and Monster High Dolls), we were touched by the fact that the party was the idea of two of Charlotte’s classmates and the joy of the rest of them. The children put their hearts and souls into letting Charlotte know that they would miss her, that they will be thinking about her, and that she has an incredible network of support.

We spent the weekend playing with friends and generally not thinking about what was on deck for this week.

We also began a mindfulness practice late last week to practice breathing through fears, especially fears of needles.

This morning my friend Jeanne came to work with Charlotte, using an energy technique called EFT Tapping. Charlotte did as good a job as she could working with Jeanne, though she did lose focus once she realized that there were still crepes in the refrigerator. She did seem relaxed and ready for anything when we left the house.

Now, Jeanne and I realized that one tapping session and a few meditation sessions might not help her enough. But, Charlotte was willing and it was worth a try.

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I got a smile from her when I told her that Bubba was looking down from atop her head and smiling. I had to take this photo to prove it!

I wish I could say it worked miraculously. Sadly, no. Charlotte began to fall apart when it was time to change in to a hospital gown for the lung x-ray. The little tigers seemed babyish to her. Then the x-ray technician called her “sweetie” and told her she couldn’t hold Bubba during the x-ray. Charlotte’s dark side started seeping out. She was muttering, crying, on the verge of a meltdown. I snuck Bubba under her thumb and we got out of there as unscathed as possible.

She calmed down and seemed to set her mind to getting through the blood draw. Until we entered the room. I’ll spare you the details, you can get the general idea from the last time we did this. Truthfully, I’m sparing me the details. I don’t have the heart to write about this again. Bottom line–this time was a bit worse. We were better prepared; instead of a phlebotomist, we had a member of the IV team to do the draw. We called Child Life to distract. And still, Charlotte just couldn’t concentrate on hertools.We tried breathing. She didn’t want to tap, so I tried another technique Jeanne taught me, squeezing Charlotte’s finger tips while quietly talking to her. Eventually she said, “Mom, stop squeezing my fingers.” Sigh.

Eventually (maybe 40 minutes later?) the IV team member had to go to the ICU so she called cardiology and we went down to see the APN (advanced practice nurse) for our pre-op conversation. The nurse and Dr. Backer spoke while we went down and they decidedFullSizeRender-4that they could get the blood once Charlotte is under anesthesia tomorrow. It’s not ideal–it will add time to the procedure and the time that Charlotte is under anesthesia, but since they couldn’t sedate her today, it was the best we could do.

Maria, the APN, explained the procedure and risks and we asked a few questions. Then it was time to get lunch and head to Art for the Heart.

We got Charlotte to bed around 9:30 after a bath, watching Mirror Mirror and swabbing her whole body with special antibacterial wipes.

We are expected at the hospital at 6 a.m. tomorrow. We’ll keep you posted periodically. If we don’t answer your texts or phone calls quickly, please don’t take it personally.

 

 

Goodbye 2015, Hello Leap Year

I realized tonight that we never did our annual New Year’s post for 2015. Probably because we were in the thick of “countdown to surgery.”

So, let me be the first in my family to wish you a happy and healthy 2016. We will not be sad to put parts of 2015 behind us. But, in truth, we couldn’t have asked for a better year. Yes, Charlotte had her third open-heart surgery. And, yes, it was the first surgery she was old enough to be scared of and the first new scar she was aware enough to be self-conscious about. And yet…she crushed it, as they say. She came through with a smile (after the dilaudid wore off).

And once past it, Charlotte learned to ride a bike; traveled to Washington, D.C., Mexico, Cape Cod, Belgium, Amsterdam, New York and New Jersey; had her first sleepover party; and made me laugh harder than you can imagine. We’re proud of the incredible strength she showed during the first part of the year and hope she’ll realize one day what a warrior she is.

As a Truncus Arteriosus type I patient, we have learned, Charlotte continues to experience best-case scenario outcomes. She has had no emergent issues and suffers no contingent developmental delays (we just learned this year that we probably should have been prepared for severe learning and developmental difficulties). With that in mind, I have one thing to say as 2015 fades into memory: Thank you.

Thank you Dr. Backer and your extraordinary surgical team. Charlotte with Dr. Backer Thank you Dr. Luciana Young, for your friendship and amazing care of our daughter. Thank you Elizabeth Capella, for teaching Charlotte’s friends about her condition to make post-surgery school easier.
C and Doc YoungC and Liz

 

 

 

 

 

 

 

 

Thank you to Lurie Children’s Hospital and the Regenstein Cardiac Care Unit.Flock of DocsThank you to Charlotte’s incomparable teacher Alexandra Mignet and her 4th grade class for throwing Charlotte a party and Skyping with her while she was out. DSCN1235Thank you to Philippe and Team Charlotte for running the Move for the Kids 5K with Charlotte in celebration of Charlotte’s recovery and in support of “Charlotte’s Hospital.”

Team Charlote MFTK

And thank you to each and every one of you who never ever treat her like anything other than a regular kid. All things considered, 2015 was a good year.

Charlotte’s Journey Home began as a way to keep our family and friends informed throughout my pregnancy and in the first critical weeks and months of Charlotte’s life. Little did I dream that it would be a 10+ year endeavor. Nor did we realize that we would touch the lives of other parents of CHD children or of kids with severe reflux. Or find an adult role model for Charlotte, another Truncus Arteriosus patient (Jessica, that’s you). Or be befriended by a tour-de-force crusader for CHD research (Francie, you know who you are). It’s been a pretty good 10 year run.

As we head into the next phase of Charlotte’s life, she wants more privacy about her growth and life changes. And as there aren’t that many medical updates these days, it seems a good time to put Charlotte’s Journey Home on hiatus. We’ll be back when there’s a heart or medical update of import, or when we want your support for our endeavors on behalf of Lurie Children’s, or when we just are so proud we need to kvell loudly.

Until then, dear reader and Team Charlotte, one last THANK YOU for all the support you’ve offered our family for the past decade.

Three in Mexico