Zippity Doo Da

Three guesses what Charlotte did today. And three guesses what she hasn't, so far, done today.

Since my mother and brother didn't get it right, either, your first two guesses don't count
Bamma and Hal's first guesses were:
Took her first steps (nah, she did that last week, I just forgot to tell you all)
Said MaMa (nope, she said that once last week and I forgot to tell ya'll, but she hasn't done it since)

So...have you figured it out? Scroll down...
(photo has nothing to do with the answer, just a cute delay tactic)

Well, Charlotte drank her entire breakfast and then some. She guzzled down 220 mls. in about 25 minutes. That was the most she had ever drunk at one sitting. And, she didn't vomit.

We thought it was a bit of a fluke because our friend/babysitter Beth said that she'd had a huge vomit after dinner last night and then had had a tube disconnection issue at bed feed. So we figured it had been nearly 18 hours since she'd had a full tummy. Still, even when absolutely starving, Charlotte will guzzle about 3 ounces (90 mls.) and then just stop. This morning, she guzzled and guzzled. She didn't want any solid food, just milk and more milk pleased. (Okay, Pediasure, but we call it milk.)

Then, just 3 hours later, she drank her entire lunch, 230 ml. Not the same guzzling, just a nice healthy pace. And she ate about a teaspoon of solid food. And, she did not vomit.

We had to delay her nap, so I attempted an oral feed at naptime. She took 35 ml (of 65 needed). And at dinner she drank 145 ml. (of 240 ml.). And, she did not vomit.

So, if you don't want to do the math: Charlotte drank 630 ml. on her own today. And, she didn't vomit.

Now I have to go do her bedtime feed. As part of the CHOW adjustments, we're increasing it tonight so I hope I haven't jinxed us with my refrain. Keep your fingers crossed. It wouldn't be our first DWOV (day without vomit), but it would be the most extraordinary.

Extraordinary, indeed. I got a glimpse today into life with a regular kid. And, boy, is it glorious. It was so easy to get up and go with her after a quick meal.Instead of chasing Charlotte with her pump (she can't quite wear the backpack yet), I got to play with her, take her for an unfettered playtime in the park, enjoy her Gymboree music class, and really, really, really enjoy Charlotte. After dinner, I pumped the last 3 ounces in half an hour, so Charlotte got to go to bed on time (we had a late nap because of a doctor's appointment). I know this isn't yet a trend, but I could get used to this!

Cheesy Eggs

A picture is worth a thousand....calories!?!? Well, not quite, but this is the face of a kid who had her first scrambled eggs yesterday and loved it! After the meal, I went to wipe her face and she grabbed the last piece of egg and crammed it into her mouth.

This reborn enthusiasm for food seems to grow out of the introduction of blenderized foods. Needless to say, we were thrilled about this CHOW recommendation, as was our Feeding Therapist.

We decided to introduce blenderized foods immediately, without the extra calories. We started with macaroni and cheese, blenderized with skim milk. The results were amazing! She loves it--every time she bites a noodle, we give her some mashed macaroni on a spoon. We have quickly seen an improvement in her solid food intake. When she's willing to eat, she'll take as much as two teaspoons. Okay, for most 14 month olds, this isn't much. But for Charlotte it's huge.

The scrambled eggs blenderized with skim milk and cheese sauce (a few extra calories). Charlotte ate about 1/3 of an egg and a teaspoon of the blenderized version, mostly feeding herself.

Unfortunately, Charlotte has been vomiting 2-3 times a day, up from our once a day average. The "urpcidents" are increasingly painful to her and horrible to witness. I'm not sure if it's the heat, the teeth she's cutting, her medicine dosing (she's gained a lot of weight since her Pepcid was dosed), or the new feeding schedule. She sees her GI doc on Wednesday and we'll discuss meds at that time.

Happy Birthday, Daddy!!!!!

Charlotte's daddy celebrated his birthday today--in NYC where he has traveled for business this week. We were very sad because we couldn't wake him up with a shower of baby smooches to celebrate. And, of course, Miss Charlotte babbles all day long, but just stares and smiles at the telephone. Oh well.

Happy Birthday, Charlotte's Dad!

Charlotte and I went to CHOW for a follow up with Dr. Long, behavioral psychologist, and M. Kirby, nutritionist. Charlotte ate beautifully. Not surprising since she'd eaten terribly at breakfast (5 ml.) and then vomited hugely before we left. Dr. Long and Midge were thrilled with Charlotte's progress. (At least she vomited at home and not in the car.)

Here's the scoop: --Stats: 20.7 lbs, 31 inches --Charlotte has gained more than a pound since her 5/31 visit. The team was thrilled with her weight gain. She's jumped up the growth chart, but I didn't write down the exact stat (sorry, Philippe).--Over the past 3 weeks, we've missed her nap feed about 2 out of 5 times. Midge calculated that she's had this stupendous weight gain on an average of 920 calories as opposed to the 960 we're supposed to be serving. This is good news in terms of our goals. --Our goals: Getting rid of the ever-frustrating, ever-elusive nap feed.--The plan: Slowly phase out the nap feed. Once it's gone, we'll add blenderized high-calorie food and then Duocal to add even more calories. (The Duocal may have been the culprit in much vomiting earlier this year--the vomiting decreased when we cut the Duocal. Since she also got really active at the same time, we're not sure of cause and effect so we'll keep an eye on it.)
What is blenderized food? Following recipes from our team (and, I’m sure from P2P), we'll make things like super-charged, high calorie meatloaf blenderized (not quite puree) it with gravy and beef broth. Adding all these calories, and hopefully enticing her to eat more solid food, will help get rid of the nap feed.
That's the upshot of the feeding clinic visit. We’ll do another follow up in 4 to 6 weeks. Stay tuned.

We had an uneventful ride home. Charlotte, who did not nap on the way to Milwaukee, was asleep before we left the parking lot. I listened to Gary Sinise read Of Mice and Men. Sooooo gooooood. Baby slept all the way to Skokie where we stopped to do some birthday shopping for Daddy. Charlotte saw a little boy with a balloon and…ootzed until I found her a (well-deserved) balloon of her own. Then she was perfectly content for two hours of mall-walking!

Heading home, Charlotte chatted all the way down the highway. About 5 minutes from home she suddenly stopped talking and vomited, two hours after a feed. Poor thing—it was clearly very painful. I had to pull over in front of the place where the neighborhood homeless men all bring their aluminum to turn it in for money. I’m sure that I was quite a sight stepping out of the BMW to strip my kid. Two seconds later she was happy again and off we went.

By the way, yesterday was a “DWOV” (day without vomit) but today’s 3 biggies sure made up for it. Yuck! In fact, I think I need to skip tonight’s bedtime feed because she’s not so soundly asleep and I can’t stand to have her be miserable again today.

That’s it for now!

Independence Day

Charlotte loved Virginia Beach! Like her Nenenne in Belgium, Bamma had borrowed a booster seat and stroller and she had some great toys left from when our nieces were little.

We got her to the beach on Friday for the first time and she loved it. By the second time I carried her over the dune, she got visibly excited to see the ocean and the sand. She was not uncomfortable on the sand—actually, she got right into it and onto it; playing and crawling in the sand, eating it, and grinning from ear to ear. Our neighbors had a little kiddie pool set up and Charlotte took up residence. We had hoped she’d play with its lovely owner, Virginia, but the girls had exact opposite nap schedules.

Our cousins came down from Richmond to visit with Charlotte. First, Flo and Tony arrived for lunch. They really hit it off with Charlotte. I’ll post a picture here soon. Then Helen came down with her children, Lauren and Nick. We had a blast hanging out with them and Charlotte truly enjoyed her cousins.

I could go on and on. As for the highlights everyone will ask about:
--She slept through the night from our arrival
--She got herself back onto her nap schedule by Sunday
--She ate pretty well
--She vomited about once a day, much less volume than at home
--She had hardly any congestion

Rather than give you a travelogue, I’ll let the pictures speak for themselves.

We’re not really independent—that feeding tube goes everywhere with us and we have to be prepared for an imminent “urpcident” at any time. But, we are far less encumbered than we were this time last year. Flashback for a minute: July 4, 2005, Charlotte’s paraphernalia included an oxygen tank, a large feeding pump, an NG tube, formula that had to be thickened, and about 7 medications that we dosed about 5 times a day. Little by little, we’re getting there!

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.

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.

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.

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.

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.

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