Fifteen? How’d That Happen?

We often joke about your first birthday, Charlotte. How we got a babysitter, posed you with a cupcake, and then went out for dinner. We needed to celebrate surviving your first year.

In that photo, you sit in your Stokke chair, looking somewhat skeptically at the cupcake and candle in front of you, surrounded by the two people who love you best in the world. We are grinning like the silly people we were. A lovely tableau of our little family, celebrating you.

***

If you look closely the picture tells a different story. It’s our baby’s first birthday and there is no party. We decided there would be nothing like the parties our friends and family had planned for first birthdays. It wasn’t that we didn’t love Charlotte. We were just so very tired. And, I knew I’d be devastated when the other babies dove into their cupcakes face-first while she ignored hers. Or when we had to stop the festivities to clean up an epic vomit or give her medication. Or when an aunt glanced over with the look of pity and helplessness that she couldn’t hide, or a teenage cousin tried to get her to eat. No way I was inviting an audience to one of our daily heartbreak sessions.

Look again at the photo: Charlotte’s dinner, on the table next to her, looks partially eaten. There are two glasses, one Pediasure and one water as Charlotte had recently begun sipping from an open cup. Plastic keys and a teething ring to jingle in order to tease and coax her.

Our isolation and my loneliness just about leak out of my eyes as Philippe and I hold hands around her, forming the protective circle we’d kept her in for a year. We thought we were so strong. We were, in fact, like the most glorious winter tree after an ice storm, sparkling yet fragile, with no telling whether the branches would break off in the wind or emerge stronger and more beautiful come spring.

It was years before I actually saw the story this photo tells. I could never understand why friends and acquaintances asked after Charlotte’s health in the quiet tones one uses near the very ill. The picture forced me to see that I’d failed my daughter, that well-meaning friends and family saw what I couldn’t—her spindly Sharpei legs, like toothpicks covered in loose skin. Healthy babies don’t have skinny legs. Or heads that look too big on their bodies. Or eyes that look tired and sunken. Holding this picture, I knew I’d gotten it all wrong—my parenting, Charlotte’s birthday, all of it. It was CHARLOTTE, not us who had survived an incredibly long, exhausting, and difficult year. Charlotte who would, I later learned, suffer post-traumatic stress disorder from this year. Not me. This photo still makes me cry.

***

On your second birthday, I dared to believe you might try a cupcake. We went to a bakery with Sheri, your favorite grownup friend, and ordered three, all different flavors. You watched while Sheri and I each ate half a cupcake. Sheri made happy small talk to distract me as you ignored your treat. I tossed the evidence in the trash. In the photo from that birthday, you’re leaning against Sheri, laughing as she holds your hands out to embrace the world. If your legs were still skinny, I can’t tell—your pink and yellow plaid dress comes down just past your knees and the photo crops at mid-calf. Other pictures show your glee at opening the pile of presents that arrived from around the country to celebrate you.

There are no pictures, however, of the cupcakes.

That same day, you picked up the Gerber sippy cup, pointed at the brand name and said, “B.” You had begun to teach yourself the alphabet. Your feeding therapist gifted you with a Leapfrog Word Whammer and you were off and reading three-letter words. So what if you didn’t care about cake? You were going to be a reader, like me.

***

For your third birthday, you asked for a chocolate and “pink” birthday cake. After the “birthday cake miracle” two months earlier, when you’d asked for a second piece of cake at Sarah’s party, I’d determined to make it from scratch. One of the layers broke as I lifted it from the pan, so I “glued” it with some icing. My decorations were less than expert. To be frank, the cake was kind of ugly. You watched me salvage the wreck. After I muttered for five straight minutes about how ugly it was, you said, “Mommy, forgive yourself.” You brought me to tears with your kindness and empathy.

We gathered a gaggle of neighborhood toddlers to celebrate. Someone snapped a picture of us as I held you toward the cake and you proudly scrunched your face to blow out the candle. Then you dug in.

I look at the photos from these days and see the person you would become: open, cheerful, kind, bright and empathetic. You thrived despite our early foibles and failures. You soldiered on to fight every medical calamity that came your way. If you had been fighting actually battles, you’d be a decorated veteran.

***

Today, on your fifteenth birthday, the cake was, quite frankly, ugly again. But you, you were magnificent. In the middle of a quarantine, you pivoted gracefully from months of planning your special day to create special moments with your friends—both virtual gaming and a socially distanced mocktail party. You were gleeful and grateful.

I am relieved that when I look at the photos from today, there is only one story, that of a young woman who came into the world with the chips stacked against her and said, “That’s not my story. My story is one of triumph.” You make my heart sing every day, helping the memories of what felt like failure 15 years ago fade into just another story that we tell.

Happy birthday, my sweet girl. May you grow from strength to strength.

Medical Update 1-day Post Repair (#CHDAware)

And now to answer your questions.

Our night: Last night was hard. Let me start by saying that one of the best parts of the new hospital building is the silence. There is no overhead paging. We cannot hear children in other rooms. We hear no street noise. All rooms are private. There is a day bed for a parent to sleep on. And the nurses told us that their first rule is “Never wake a sleeping baby.” And post-op kids, no matter how old, are all babies.

Nevertheless, Charlotte required intense monitoring last night. Every hour the nurse had to do a full round of checks–blood pressure, temperature, flush all her lines, strip the chest tubes, adjust meds, reset or check all the med pumps, etc. It takes about 10 minutes each time. They tried to do it without waking Charlotte, but stripping the chest tubes and drawing blood through her central line cause a kind of suction-feeling pressure that is uncomfortable, or down right painful. So she woke up and sometimes pressed her Dilaudid button.

Can she eat yet? On top of that, Charlotte was starving. She was literally begging to eat. But she vomited twice after a few ice chips and we had to go back to square one.  After she vomited two more times, her night nurse made a connection between the patient controlled analgesic (PCA; pain med with a patient-operated pump) and the vomiting–it is one of the known side effects of Dilaudid. Charlotte seemed to be vomiting within 2-5 minutes of pressing the button if she was sipping water/juice while the nurse did her checks. So, at about 3 a.m. we added Zofran, an anti-nausea medication.  Ice chips and water stayed down, at long last. And Charlotte and I both slept hard for an hour.

But she had to have a chest x-ray before the doctor would allow a liquid diet. And there are no x-ray techs available at 2 a.m. Why? Because in this amazing place, the x-ray comes to you!  So, the portable x-ray machine and its operator showed up at around 4 a.m. The x-rays immediately uploaded to the radiologist and we got clearance for a clear liquid diet.  The only problem? The kitchen wasn’t open and the cafeteria had no jello, and other than apple juice, only had red juices. Red juices are bad–if she vomits them it can look like blood. Charlotte was so over apple juice by that time.

At 7:25 we ordered “breakfast.” Then we had to wait 45 minutes for chicken broth, jello, and iced tea. Poor honey whimpered until it came–by then she hadn’t eaten in 36 hours. I’d like to say she gobbled it down. She determinedly and slowly fed herself, and was indignant when the doctors came in to do rounds. But, she ate the broth and half the jello and perked up for a while. She’s been cleared for solids, and is currently watching Rainbow Rocks and munching Sun Chips.

Medical update: Dr. Backer came by and after commenting on how pretty Charlotte’s hair looked (for real :-)) noted how pleased he was with her progress. Medically, he added a blood pressure medication temporarily to address high bp. She’ll also start an aspirin regimen today. That is designed, in “mommy translation” to keep the porcine valve clean. I’m going to get the real terminology, but had to cut the doc short because Charlotte needed the room cleared.

CCU docs came by and we learned that Charlotte’s arterial line will come out today. Her Foley catheter (pee line, as we call it) came out earlier this morning. So, if she feels like it, we should be able to get her for a short walk on the ward this afternoon.

State of mind: As I just texted a friend, Charlotte is feeling cranky and crappy. Her chest hurts. Her back hurts from lying in the same position for the past two days. She’s tired. She is hot and feels sick (she has a low grade fever, nothing to worry about). She doesn’t want visitors–even asked her favorite grown up to hold off coming today. But she was kind to our rabbi when she stopped by. She justs wants mom an dad here. That’s perfect, because we don’t want to be anywhere else. Still, she asks for what she needs, mostly nicely. She says thank you and she attempts a wan smile every now and then. Dr. Jate says she’s “appropriate” and we couldn’t agree more.

Congenital Heart Defect Facts (Thanks to the Children’s Heart Foundation):

  • There are an estimated 2,000,000 CHD survivors in the United States.
  • For the first time, more than 50% of the CHD survivors are adults.
  • 91,000 life years are lost each year in this country due to congenital heart defects.
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
  • The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
  • In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

When you support CHD research and Lurie Children’s, you support Charlotte. And we thank you!

(If you want, you can note on the donation form that your gift is in honor of Charlotte and you want it to go to the cardiac team.)

 

A Round Up of Recent Adventures: Newport, Rhode Island

Today, Charlotte is 6 years and 365 days old. Because it’s a leap year she has to wait one more day for her birthday. She can barely contain herself! I can hardly believe that seven years have passed since she changed our world forever. More on that tomorrow…

We’ve had a lot of excellent adventures lately, starting in April when we hosted Marlène, a French student teacher who was doing an internship (stage) at Charlotte’s school. Hosting Marlène forced us all to speak more French (though she wanted to be practicing her English!) and to eat our family meals in more leisurely manner.  We learned a lot about Charlotte’s school from a teacher’s perspective, too. In all it was a wonderful experience which we hope to repeat.

At the end of the internship, we took Marlène and two other interns (Solenne and Fatou) to Newport, Rhode Island for the weekend.

After strolling on the pier and having an excellent lunch, we toured The Breakers. Philippe, Marlène, Solenne, Fatou, and I enjoyed the self-guided audio tour. Charlotte busied herself sketching each room.  She was fascinated, but wanted to see it her way, not understand the history or fabrication of the building. Her drawings are evocative if not representative, especially the bubbly way she captured the crystal and gold chandeliers in the dining room.  I was pretty sure she didn’t hear the few details I mentioned to her or that she read, until she commented last week about the Vanderbilts and the leather-covered walls in their library!

Charlotte in front of The Breakers, Newport RI

The next day was a golden summery day so we went for a wonderful breakfast at The Hungry Monkey in Newport and then walked part of the Cliff Walk, with mansions (historic and otherwise) on one side and the sea on the other.

Solenne, Fatou, and Marlène on the Cliffwalk, Newport RI

At the end of the walk, Philippe hoists Charlotte like a sack of potatoes. I try not to notice her head pointing at the concrete.

 Thanks to Marlène we also made it to The Top of The Hub, the restaurant and lounge at the top of the Prudential Tower in downtown Boston. I’m ashamed to say that after more than a year in Boston, I’d not ever heard of this wonder. We met Solenne and her host family for a farewell cocktail and dinner.

The three little girls were fascinated with the view…there was a game on that night! Once again, I got a kick out of seeing Charlotte reject (Kobe beef) hot dogs (on a brioche) in favor of New England clam chowder and spicy calamari.

Charlotte and I have a list of things we want to do in Boston before we move next month. Going to Salem and the Peabody Essex Museum was on the list. We knocked that off the second weekend of Spring break. You can read about that trip in my previous post, Charlotte and Poetry in Motion.

Charlotte (and little bear) at The Top of the Hub

Sunday at our House

Believe it or not, Charlotte slept until 8:20 a.m. Did I use this time to get cracking on my enormous to do list? Did I prep a lecture, write a query about copy editing, or even do some laundry? Er…no. I set the alarm for 6 a.m. It awoke me from a disturbing dream (seriously, if I could do Julia Cameron’s morning pages, I’d have some amazing screenplays. I even had the privilege of taking a screenwriting with her in a previous iteration of my life. Geesh.) and I decided to let Charlotte be my alarm.
Oh well.

We had a quiet Sunday. We met our friends Esther, Dave, and Sarah at a street fair to watch Chicago’s Trinity Dancers. Charlotte was asked to step away from the stage as she attempted to join the show. Sarah stood at a respectable distance (though she is the one in focus in the picture–can you pick her out, Esther?).

My pals Sheri and Beth came for brunch. Charlotte was, I think, so excited about this that she didn’t fall asleep until nearly 1 p.m. and then managed to sleep through most of their visit.

I was hoping to report a great-eating, no vomit day, but, alas, we had a big vomit at dinner. (Charlotte did to her credit, finish an entire baby yogurt for breakfast and a quarter cup of pizza puree for lunch.)

On the vomiting front: I don’t blog about this often any more, but it’s gotten worse again. We’re seeing at least one significant vomit a day as well as many gags and mini-vomits. I’ve written a log of blog entries about this in my mind, but I loath writing about it. I am at my wits’ end and end every meal close to tears. Part of our CHOW strategy is to firmly tell her “no” when she gags. I have to yell at her when she’s in pain and unhappy because we can’t tell when it is reflux or behavior. So, in other words, I have to scare my baby and make her cry. It’s breaking my heart.
And what does she do? When I burp (yeah, I do occasionally burp), she pets my chest, looks concerned, and says “Mommy okay.” She thinks it hurts me to burp like it hurts her. She is the sweetest child I have ever known. And while I would do anything to change her medical circumstances, I would not do a thing if it would alter her personality.
Gotta go before the tears soak my keyboard.

Fattening, er, Feeding Charlotte

Now that it’s summertime, you may have noticed that Charlotte has a double chin, some little tiny fat rings on her neck and on her thighs. I forgot to mention in the feeding update that she weighed in at 28.6 lbs–a near 2 lb. weight gain in 3 weeks. She also grew 2 cms.

If you’ve eaten at our home, I hope you’re thinking that it is my home-cooking that is doing the trick. You know, the healthy, as-natural-as-I can-make-it, varied food that I love to cook. Of course I’m not feeding my daughter high fructose corn syrup, processed sugar and flour, boxed foods or chemicals. I’m not the totally organic type (cannot fathom the $6+/gallon for milk), but I strive for hormone-free meats, local veggies, etc.

Yeah right.

Her favorite food right now is pizza (puree). I make it for her from scratch. Here are the ingredients (I am seriously cringing as I post this).:


And here’s a picture of the finished product. In case you’re wondering, it smells and tastes quite good.


You don’t want to know what’s in Charlotte’s peanut butter and jelly puree!

How do I feel about this? Check out my LiveJournal essay from August 2006. I feel the same way today.