Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Driving Cross Country

It’s hard to believe that it’s been a year since we brought Charlotte home from the hospital. On 6/28/2005, we bundled her up and put her in her infant carrier for the first time. We got her home, waited for all of her supplies to be delivered and got checked out by the home healthcare nurse to make sure we knew what we were doing. (Does any first time parent know what they’re doing on the first day they are “let free” with their kid? I managed to trip on Charlotte’s NG tube and pull it out of her nose…christening us “Parents-in-Training” or “The PITS”).

On 6/28/2006, we bundled Charlotte into her front-facing (!) car seat, pulled out of the garage and headed for Virginia Beach. It’s a long drive and we decided to do it overnight, hoping the little one would sleep her usual lovely sleep. Of course, she didn’t. She also didn’t complain. She simply talked, giggled, and played until well-after sundown.

Our 900+ mile trip began uneventfully. We were both probably too tired to have pulled this off, so we swapped driving fairly regularly. I pulled the “insomniac” hours, driving us through a thunder storm on desolate Route 52 in Kentucky near 2 a.m.

Dawn broke in West Virginia. Sunrise was lovely. We stopped for breakfast at Bob Evans (if you know Philippe at all, this will not surprise you). Charlotte greeted all of her adoring fans with regal waves and smiles. She ate a great meal, including tasting my eggs and sausage. It probably didn’t hurt that we had skipped a feed overnight, but we thrilled to watch her eat with gusto.

Charlotte anticipates her first cup of Bob Evans Coffee

So far, so good. Then…an hour outside of Beckley West Virginia Philippe felt the car doing something odd. Within minutes we were broken down on the side of the road, rushing to get out of the car because the engine was smoking and we smelled burnt rubber. To make a long, sad story short—we spent an hour by the road in the hot sun waiting for a tow truck, two hours in the tow truck getting to the nearest BMW dealer (what, you thought there was one every 30 miles or so in West Virginia?!?!) and another 3 hours at the dealership. Charlotte again greeted her adoring fans and ran for mayor of the Roanoke Valley BMW dealership.

She had fun, fun, fun ’til her Daddy took the keys away

At first, the mechanic told us that nothing was wrong with our car, it had simply overheated going down the sinuous mountain road. We begged to differ, however, so they checked again. Good thing, too, because we had a blown transfer case. Now, I’m not sure exactly what this means (this is where Philippe should add a post, no?), but had we gotten back on the road, we would have broken down again. Good thing our ultimate driving machine is still under full warranty.

BMW procured us a rental car and sent us on our way. Another 5 hours or so later, we pulled into my mother’s driveway, about 27 hours after leaving Chicago. It was a long day.

Charlotte was a trooper right up until the end. She vomited once that I remember—in the tow truck. I’d had no choice but to pump a full feed, not even giving her the opportunity to eat, so we weren’t really surprised. She charmed everyone at the Starbucks after dinner—we basically hung out there to let her walk and finish pumping. The bonus was that some more storms came through and we saw the most beautiful rainbow I’ve ever witnessed.

When we stopped for dinner, we put her into her pajamas. She fussed quite a lot between Richmond and Virginia Beach; calming only when I sat with her and sang her and endless run of Broadway tunes and old 70s songs. Seriously. My singing voice calms her. Go figure. But, she finally fell asleep and transferred into her Pack-and-Play beautifully. She slept without moving and with a hardly a peep until Friday morning.

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Giddy


On our road to life as a regular kid, there are milestones that take on enormous meaning. They are the same milestones that all of our friends’ children have achieved at some point. Yet we find that because we have fought so hard for them, they make us quite giddy. They become monumental moments. As you might imagine, most of these achievements center on food and eating. And, they come at the most unexpected moments.

Yesterday, our little family attended the baby naming of our little buddy Aaron. Aaron’s grandmother paid special attention to her little guests—Charlotte was treated to two firsts: her first balloon and macaroni and cheese. She was fascinated by both! She ate at least 5 pieces of macaroni. And she ate a lot more ice cream, vanilla and chocolate.
(Blogger won’t let me load the picture of the balloon. Sorry.)

The mac and cheese might have been a fluke. It was about 2:30 p.m. and that is when we generally hook up a small feed during her nap. So, her body is used to getting food then. (In fact, she’s stirring in her nap right now because I forgot to hook her up and it’s too late to do so. Poor thing.) Okay, it might have been a fluke. Then again, today at lunch she rejected her cottage cheese and fruit purée in favor of my grilled potatoes and zucchini. She even tried (and liked!) some of my bratwurst.

And, yes, this was all most unexpected because Charlotte’s sleep has been nothing short of wacko this weekend. She refused to nap properly on Saturday, fighting both of her naps for an hour before finally crashing. Same thing yesterday morning. Yesterday afternoon, we gave up and kept her at Aaron’s celebration. Both Saturday and Sunday morning she slept in really late for her (nearly 7:45 a.m. yesterday) and had a hard time falling back to sleep. Today, she’s right back on schedule with both naps. Just a weird weekend all around.

So, flashback a year: Last 6/25 we celebrated our (secular) wedding anniversary at a Sappori, an Italian bistro not too far from Children’s Memorial Hospital. We were giddy because we had just learned that our pumpkin would be coming home in a few days. This year, we celebrated our wedding anniversary by sharing our friends’ family celebration and we were giddy because Charlotte showed definite interest in “big girl” food.

Giddy is good.


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All Done (Almost) plus Heart News


Tonight at dinner Charlotte drank more formula (Pediasure) than she has ever drunk in her entire little life! She topped off at 190 mls. If you recall, before she went “on strike” on 12/20/2005, the most she’d taken in was 180 mls. Earlier this week, she took 165 ml. for breakfast. So, twice this week she has taken nearly 50% orally of the food we attempt to feed her by mouth (we’re not counting the 300 mls. we pump while she sleeps). She’s also taking her solid food more willingly, though only 3-4 spoonfuls per meal. It’s a start and we’re kind of giddy.

On the heart front, we had this news from Dr. Young today:

“The perfusion scan shows no significant change in comparison to the last study,
which I believe was in February. The echo shows moderate narrowing across her
pulmonary outflow, at the conduit and branch pulmonary arteries with otherwise
good biventricular function.”

What does this mean? Dr. Young is going to consult with Dr. Pophal, the interventionist cardiologist, to determine appropriate timing for a catheter procedure.

We did the last cath in August. Dr. Pophal told us at that time that we might be looking at “serial caths” prior to the next open-heart surgery, so we’re not surprised by today’s news. Actually, I’m surprised that the last cath bought us 10 whole months.

Meanwhile, Charlotte has no idea that she’s not just a regular kid. She squeals and plays in the playground and Gymboree, completely unaware that I’m chasing her with her Zevex pump backpack (she can’t quite wear it yet). She stood independently several times in the past two days. And she’s quite the chatterbox! We’re not looking forward to another anesthetized procedure, but if it can stave off surgery and help her continue to grow and develop, then so it will be.

I attended a meeting of the Children’s Service Board of Children’s Memorial Hospital today. For all of you local folks, please save October 5 for our Gold Coast Annual Fashion Show. It’s one of *the* fundraising events of the Chicago “season” and it’s shaping up to be great. Also, tomorrow (June 22) is Chicago Sun-Times Kids’ Day—look for volunteers selling special editions of the paper to raise money for the hospital. All of the CMH boards are focused on raising money to build our new hospital and your support, if you can lend it, will serve generations of Chicagoland kids.


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Some Photos

I love music class at Gymboree. It really makes me smile to clang bells, shake noisemakers, and poke at bubbles.


Bells, Bells, Bells!

Gosh, I’m thirsty! All that music made me work up a sweat!


She really is Esther Poppins. Here is Esther, chilling in Charlotte’s arm chair while baby naps.


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C’était une enfant surdouée



I just noticed that my French phrase-a-day calendar declared “C’était une enfant surdouée” for June 12. The translation: She was an exceptional child. That phrase pretty much sums up our very long day at the hospital yesterday.

Charlotte and I dropped Daddy at the train and headed to the hospital. We checked in at about 8:15 and played in the Radiology waiting area. There’s a kinetic sculpture that has balls that travel around (think MouseTrap in perpetual motion). The ball jumps off of things, rings bells, slides around. You get the picture. Charlotte was entranced. She spent at least 20 minutes checking it out, cruising around it, and banging on the Plexiglas. Another 10 minutes or so were spent flirting with a little 2 year old in the waiting area.

We were escorted up to Nuclear Medicine where we waited for the IV team. Usually, I leave the room when the IV team shows up because I just can’t stand listening to her scream in pain and fear while they poke her vein for the IV. This time, though, I took one look at Charlotte and realized I had to stay. She looks for me the minute she’s mildly upset and I know that she would have known if I had left. She needed me. So, I stayed at her head, trying to maintain eye contact and petting her. Three technicians held her down while the phlebotomist expertly found her vein. Charlotte was terrified. And we were both crying. This part just gets harder as she gets older.

They strapped her to the machine for the VQ scan. It takes about 30 minutes and checks the blood flow velocity in her lungs. Charlotte screamed almost the entire time. She tried to suck her thumb, but couldn’t even calm herself that way.

After the test she calmed down in about 10 minutes and was quickly her cute self.

We had a while before we had to be at the Procedure Suite for the echocardiogram, so we had coffee with Lauren R., the CMH Foundation liaison to the Heart Center. She brought Charlotte the most adorable stuffed doggy + puppy. Charlotte loved her gift. Lauren and I talked about the Heart Center, the new hospital and fundraising. I learned a lot and it was a nice break.

Off to the Procedure Suite…after a long wait, we were escorted the suite where we went through the usual paperwork. Since Charlotte was undergoing anesthesia, the Cardiology LPN, two RNs, and two anesthesiologists asked me about her health, weight, food intake and medications. I had to sign consent forms. The usual stuff—it takes about 30-45 minutes.

Then, Dr. “Butch” Uejima, the anesthesiologist, gave Charlotte a little bit of Versed through her IV. Up until then, she’d been alternating between calm and anxious. Just seconds after the Versed, Charlotte broke into a goofy grin and then an evil giggle. It was like watching my kid on laughing gas. She willingly cuddled into Dr. Butch’s arms and he cradled her as he carried her to the procedure room. I love when the doctor carries her away, rather than rolling her on a gurney. It says so much about the hospital and how the people there care about kids.

Philippe met me and we had lunch during the procedure.

Around 3 pm, we went back into the Procedure Suite and found our little one fast asleep, looking like an angel, with an oxygen cannula. Because of our previous anesthesia experiences, we expected mild delirium, perhaps nausea and a difficult awakening. Well…now that she’s older and her function is pretty good, Dr. Butch was able to use something called Proforol. He sedated her via her IV, not using gasses. She was not on a breathing tube. The difference, for Charlotte, was astounding. She opened her eyes, recognized mom and dad, stuck her thumb in her mouth, reached for her new doggy and closed her eyes. She was calm and peaceful. She drank and tolerated several ounces of Pedialyte. She cried when the IV came out and after that she basically said, “Let’s blow this popsicle stand.”

So we did—we went home and fed our hungry kid. She ate 170 mls. If you haven’t memorized her stats, that’s more food than she has taken orally since 12/21. It didn’t hurt that she had not eaten since Sunday night. When she’s hungry, she eats a lot. Not enough. But a lot. Hallelujah.

We walked to Scooters where we confirmed that Charlotte really does like chocolate malt concrete frozen custard. Then we put her to bed and she slept 12 quiet hours.

In fact, she was an exceptional child. Truly.

As for test results—Dr. Young is hoping to be able to tell us something tomorrow. We’re hoping that Charlotte’s screaming did not negate the VQ scan. Fingers crossed and we’ll pass on news when we have it.


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Lucky Thirteen


I’m ready for my closeup, Mr. Deville

Today Charlotte is thirteen months old. She’s been keeping me so busy this week that I haven’t had a chance to note any of her greatness. And she has been great. So, what has Charlotte done this week?

It has been a week full of development for Charlotte. Both her Speech and Physical Therapists noted that they saw big changes since last week. Philippe and I have been continuously in awe of how our baby is turning into a toddler, how aware she is of the world she lives in, and how she is beginning to interact with everything and everyone in it.

–She’s gone from speaking a few syllables to full-on babbling, complete with intonation. Mostly “ba ba ba ba.” I’m trying to get it on tape for the audioblog, but she clams up the minute I dial.
–She’s really taken to walking with the push toy. She thinks it is a blast; even with her little pump backpack on. We’ve been practicing on her deck and on the sidewalk. Thanks to my sister and her PT we’ve got a push toy for upstairs and downstairs.
–She’s finally gotten the knack of getting from all-fours to sitting on her bum. Funny that she did that after she started cruising, but, no matter, she’s doing it now!
She blew her first kiss!
–We started Gymboree. She loves it! I never thought I’d do Gymboree—had my heart set on the more modest park district program. But, Gymboree is the only thing that works with her nap schedule. And did I mention that she loves it? She doesn’t like the slides, but she digs the air log that the kids push and thinks the bubbles are the best thing ever. She interacts very nicely with the other children and I’m having fun meeting their moms and dads.
–Teeth # 7 & 8 came in earlier this week. We had some sleep interruption that we attribute to teeth, but nothing major.
–And–the news you’ve read this far to get to–she’s eating! Well, she’s eating a lot more than she was. On Wednesday she took 4 ounces at each of her three meals. That’s 3.5 ounces more per meal than she had taken in a full day 3 weeks ago. She no longer uses a bottle–that’s strictly for babies! Her sippy cup is only for water according to Charlotte (she drinks several ounces a day.) Big girls drink their Pediasure from an open cup. Charlotte has several in pretty colors. She’s still vomiting at least once a day. We clean it up and move on. We’re keeping our fingers crossed that the eating is a trend and that being upright will help abate her reflux. I’ve read that many children outgrow reflux by about 20 months. Perhaps we’re seeing signs of that.


Check out my milk mustache! More milk now!
Upcoming dates for Charlotte:
6/12: Lung perfusion and sedated echocardiogram
7/12: Follow up at CHOW with her Behavioral Psychologist and Dietician
8/18: First dentist appointment! Charlotte will go to a dentist early due to the acidity of reflux and the potential damage it can cause.

What’s exciting about this schedule? These are Charlotte’s only doctors’ appointments prior to her 15-month well-baby check up. In the same period last year, she was going to the doctor at least 3 times a week.


Playing with Daddy in the Baby Zoo


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I Think CHOW Might Be On to Something



At 9 p.m. on 6/3/2005, Philippe walked into the house and warned me not to be surprised if Charlotte were intubated by morning. She was having labored breathing and there was concern over her CO2 levels. I couldn’t sleep and started writing the next day’s update at 1 a.m. For 2 days we lived on tenterhooks wondering what was next.

Back then, I really thought those 49 days would be indelibly marked in my memory. Today, I only remember the CO2 incident because I went back and scanned the blog entry.

If you think a year makes a difference, let me tell you about the three days since our visit to CHOW:
So…since our Wisconsin visit we’ve been following the “rules” really closely. DH felt so bad this morning when he couldn’t find the “summer vegetable” bottle and gave her yogurt cereal instead. Poor guy.

And….it seems to be working I’m not sure what the ultimate goal is, since we know it’s not weaning. Since we visited the Feeding Clinic, here’s Charlotte’s oral intake
Thursday:
Breakfast & Lunch: 0
Dinner: 120 mls. You read that correctly, 120 mls. The kid hadn’t had more than 20-30 mls. at a time in several weeks.
Friday:
Breakfast: 60 mls.
Lunch: 65 mls.
Dinner: 40 mls.
Saturday:
Breakfast: 100 mls. For her Dad! She hadn’t eaten for Daddy in months.
Lunch: 25 mls. Maybe distracted b/c Mommy and Daddy were deep in conversation.
Dinner: 75 mls.

She has eaten a more total ounces in the past 3 days than she totaled over the past several weeks. I’m not sure how boring her and telling her “one more sip then all done” works. But, hey, mine is not to question why!

Fingers crossed that this is a trend and not a fluke.

Oh, and did I mention that we broke the snack rule today a little? She really, really wanted to taste our chocolate frozen custard. Then she really, really, really wanted more. Clearly, she is our child! It’s all about the ice cream, isn’t it? We’re thinking of asking if we can substitute frozen custard for Pediasure. Tee hee.

Happy Saturday night!