Heart Surgery Update

Charlotte on Thanksgiving Day

I spoke today with Charlotte's cardiologist, Dr. Luciana Young. After conferring with Dr. Pophal, the interventionist who performed angioplasty two weeks ago, and with Dr. Backker, one of Charlotte's CV surgeons, she came to the following conclusions:

The angioplasty balloon procedure was able to alleviate the RPA (right pulmonary artery) restriction a bit. However, because the conduit is small (just the right fit for the 5.25 lb. baby who received it on 5/16/2005), the opening of the RPA will probably not last very long.

Charlotte, however, is exhibiting no heart symptoms. A very good thing.

So...Dr. Young prefers to schedule the surgery for sooner rather than later. We're looking at a mid-March date, to have her recovery week coincide with my Spring break.* I'll have a date from Dr. Young as soon at CV surgery has processed the paperwork.

We are, needless to say, frightened, anxious and not surprised by this news. It's very easy to forget that Charlotte is a heart patient. Certainly her heart has caused us no concern since she was released from her first hospital stay. And her feeding issues necessarily focus us elsewhere. While we knew this day would come, it feels a bit like being thrown into a cold swimming pool in mid-January in Chicago. Not good. Not good at all.

*Spring break you say? Yes, if you haven't heard, I've accepted an adjunct teaching position at UIC for the spring. Given the turn of Charlotte events, the timing isn't great, but c'est la vie.

Cardiac Cath Update

Charlotte came through her procedure with flying colors. She did very well with anesthesia and spent the early evening resting and staring into space. This was a great improvement over the delirium tremors and other responses to anesthesia. We were able to bring her home late Monday night.

Dr. Pophal told us that the catheter confirmed the restriction in the Right Pulmonary Artery (RPA). He was able to alleviate the restriction with a balloon angioplasty procedure, reducing the restriction from severe-to-moderate down to moderate. He remains concerned, however, because the ratio of blood flow to the left and right lungs is still quite uneven. Because of the RPA restriction, the left lung is receiving more volume and velocity of blood flow. This puts Charlotte at greater risk for pulmonary disease. Finally, her pulmonary valve (the homograft) leaks quite a bit (it has since the chyllus efflusion episode in May 2005).

Bottom line? Charlotte's heart team will confer at the cardiac conference on Monday, 12/18. Dr. Pophal suspects (and we agree) that they will recommend we schedule her second open heart surgery. Perhaps in 3 months, perhaps in 6.

I have a huge lump in my throat as I write this. We have known, of course, that the second surgery was coming. And given that she was 5.25 lbs. at the first surgery and is now 25 lbs., it's not surprising that the surgery will be soon. But, we've been able to pretty much ignore the fact that she's a heart patient up until now. Reality has officially smacked me in the face this week.

As for Charlotte--she was a living doll throughout the whole day. In pre-op, she sat on her bed and colored. Then she played with the LPN's stethoscope for 20+ minutes. This was particularly amazing because she usually breaks into tears at the sight of a stethoscope. She liked this LPN (Ana Maria) so much that she blew her tons of kisses, too.

Just before they took her for the procedure, Charlotte started crying (it was nap time and she hadn't eaten in 12 hours). She very clearly said, "I want mommy" and "I want my mommy." So, once again, we have a developmental breakthrough in pre-op. (The last one was the appearance of her first tooth as we waited for her g-tube procedure.)

p.s. I had some amazing pictures of Charlotte from pre-op and post-op, playing with the stethoscope, smiling at Ana Maria and posing with Dr. Pophal. Somehow, they have disappeared off my media card. My digital woes continue.

Cardiac Cath Procedure Tomorrow

Charlotte goes to the hospital tomorrow for her second cardiac catheter procedure. It's been 15 months since the last one. Back then, she was tiny, spindly and being fed through a tube in her nose. Today, she's a chatty little monkey, love to give hugs, and giggles a lot.

It's going to a LOT harder to watch her be wheeled down the hall for anesthesia than it has ever been before.

Philippe believes that my fear about this procedure prompted my dreaming last night that I lost Charlotte. He's probably right. In the dream, I was out somewhere with Charlotte in her stroller. Next thing I knew, the stroller and baby were gone. I looked frantically for her. Literally saved by the bell, I woke up to the alarm clock with all members of my family safely tucked into their beds.

Charlotte will be seen tomorrow by Dr. Stephen Pophal, her interventionist cardiologist. She goes to the cath lab at 10:30 a.m. CST and we expect the procedure could take as long as 4 hours. Please keep her in your prayers.

Where to start?

Charlotte hams it up for Uncle Hal's camera on Thanksgiving Day.

The biggest news ever: Today is Day #5 without vomit. Yep, five whole days with no vomit (I'm not counting tiny little wet burps at breakfast). I'm jumping for joy.

The even better news: Since Saturday, Charlotte has been eating like crazy. She simply loves Spaghettios. On Monday I had to give her a second serving. Tonight she ate about a tablespoon. She's drinking about half of her Pediasure each day. Amazing. Truly.

I'm sure there is a correlation between the eating and the lack of vomit. My theory is that the more days she goes without a major reflux incident, the less she associates eating with pain and the more she eats.

Word of the day: After her nap, I asked Charlotte if she wanted to eat. She said, "Eat." She even enunciated the "t" at the end.

Flavors of the week: Pineapple. She likes to hold a chunk or two and suck on it. And wheat thins. Nibble, nibble.

Wow.

Charlotte in the Big Apple

New York City.

Yesterday someone asked me how Charlotte liked New York City. I said that for her it probably didn’t seem that different from home: We started the day at Starbucks, played in a local playground and then warmed up in the Children’s section of Barnes & Noble. And, no, I’m not getting paid for product placement. (That would be nice though, wouldn’t it?!)

As usual, traveling isn’t the best treatment for Charlotte’s reflux. For some reason, she was gagging a lot on Saturday and Sunday before we left Chicago, so we did not have high hopes for the airplane or travel day. We got lucky, actually. Charlotte had one urpcident on Sunday. Sadly, it was in the middle of the night after her bedtime feed. That’s the worst time, as far as I’m concerned. It disrupts her sleep and seems quite painful.

On Monday she was still quite gaggy, but I needed to make up for having underfed her on Sunday. (When we travel, we never pump her en route. We let her eat what she will to avoid urping.) Sadly, after her nap, she had a reflux episode in the stroller on 3rd Avenue. Chalk it up to New York, no one noticed or said a word!

Today, she was back to eating as she has been for a few weeks—about 50% by mouth. She had a small gag at breakfast, but nothing dramatic.

The odd thing is her napping. At home she naps 90 minutes, no more, no less. You can set your clock by it. Yesterday she napped for 2+ hours. I wasn’t surprised because she hadn’t napped well on the flight and her sleep had been interrupted Sunday night. Today, she napped for more than 3 hours! I was shocked. And a bit bummed, because I had a fun outing planned that we had to skip.

All in all, Charlotte’s first trip to the Big Apple has been just another couple of days for her—playgrounds, coffee bars, and story time. She’s enjoyed being paraded around Daddy’s office and going to restaurants with Mommy and Daddy.

Tomorrow, it’s off to New Jersey to charm her cousins.

A Message to Team Charlotte

Riddle: If you accidentally spill a glass of water on your laptop, what happens?

Answer: Well, it works for a little while, hooked up to a desktop. The touchpad and keyboard die. And then, nothing. (Okay, I know this is not funny.)

Yep, this tired Mommy knocked over a glass of water. Now my dear laptop is at the computer hospital where, hopefully, they will be able to retrieve my data tomorrow. We saw all the files before the Vaio died for good, but there's no guarantee.

If you're reading this and you have occasion to know my email address, please drop me an email with all of your pertinent information (email, phone, etc.). If I've emailed you since Tuesday, chances are I still don't have your phone number or address. I'm able to email by responding to your emails saved on my web-based interface.

Also, if I've sent you anything I've written since June (essays, children's book, spreadsheets, lecture notes, cover letter, c.v., resume, anything at all), please send a copy back to me.

Just asking for this to hedge my bet in case MicroCenter tells me that I've lost everything. Keep your fingers crossed that they can retrieve the data.

Finally,

PUBLIC SERVICE ANNOUNCEMENT:

Back up your computer. Do it now. Seriously.

Thank you, Team Charlotte.

18 months!

18 months old. Indeed.
In Hebrew, the characters that make up the number 18 also spell the word to life. So we say: L'Chaim! To life!
Indeed.

Election Day

When I was a girl, my elementary school closed for election day because the cafeteria/gym was our local polling place. My mom would take me with her, right into the big booth with the black curtain that closed behind us. I'd watch as she flipped her choices and then heaved the big lever to cast her vote.

Polite conversation or not, my parents talked politics at the dinner table. I registered to vote as soon as I turned 18. The first election I was eligible to vote in pitted incumbent Ronald Reagan against former Vice President Walter Mondale. And, I was lucky enough to be at a college where people talked about politics (a lot) and dated across party lines. During that election, my boyfriend was the president of the campus Republicans. (And, no, he did not invite me to any inaugural balls. This is still a sticking point.) The next semester, the friend who got me through political science was the son of Mr. Mondale. It was a heady time.

Following my mother's example, I took my daughter to my polling place today. (Many thanks to my pal Jeanne S. who serendipitously showed up in time to take our picture.) Her memories won't include the huge, looming mechanical machine. She'll know about electronic polling, machines that won't take the ballot as fed, and all kinds of Cook County mixups. She'll learn that sometimes we have to vote for the lesser of two evils.

But, she'll know that it is not just her privilege and her right to vote, it is her duty as the proud citizen of a democracy.

Flavor of the Week

Homemade strawberry sorbet. Hey, Dean, thanks for the tip on the ice cream maker!

Flavor of the Week

Posing for her closeup, Charlotte practices being a super-model.

Oscar Meyer and Chef Boyardee are Charlotte's two favorite chefs these days. The flavors of the week: turkey bologna and Ravioli-Os. These are truly among the foods I never thought I'd feed my child, at least not before she hit pre-school

In honor of her mom's new writing gigs, Charlotte gets into the books

For the most part, feeding Charlotte for the past few weeks has resembled my last feeding post. Until yesterday, she continued to refuse most solid food and to take in only bout 25% of her Pediasure.

I recently made some changes that seem to have improved things or at least to have taken some of the tantrum out of eating:

--I've removed the table from the Stokke chair. Charlotte sits in the chair pushed right up to the table. This eliminates the possibility of her fighting me by trying to lift the table top off of her high chair and/or by putting bits of her food down the little slot in the table.
--I've stopped trying to feed her purees at many meals. She is seriously interested in feeding herself, a very recent development. So I give her a couple of noodles, a block of cheese, a quarter of a piece of bologna and disappear into the kitchen. As I prepare her Pediasure, I watch her eat all by herself. Mainly, she's mouthing the food, sucking on bits of ham, cheese, kielbasa. But, sometimes she takes, chews, and swallows real bites.
--I also tell Charlotte that she has to take 10 sips. We count to 10 as she takes 10 sips.

So far, so good. She did not vomit at all on Tuesday and Wednesday. Today and yesterday she drank 135 ml for lunch. Not an all time record, but pretty good for the past few weeks. I'm still crying over spilled milk, but not quite daily.

More Shameless Self-Promotion

Well, it's official. I'm a columnist, writing quarterly about the "kidslitosphere," or blogs that talk about children's literature. If you're interested, you can read more at Prairie Wind.

Also, I've recently begun reviewing children's books for the longest extant children's literature blog, Book Buds Kidlit Review. My charming new editor posted my introduction and bio today and my first review will be up to tomorrow. To entice you to read more, if you click here you'll get to see a picture of Charlotte.

More on Charlotte tonight or tomorrow, with lots of pictures.

Thinking of Leo

On September 19, I asked you, Charlotte's community, to send healing thoughts to Leo Dubinsky, the child of one of Philippe's Kellogg classmates who was battling inoperable brain cancer.

I am terribly sad to post this update--Leo passed away early Monday morning. We are stunned and heartsick. Our thoughts this week are with Leo's mom, dad, and little sisters and extended family.

Zichrono L'vracha, Leo, may your memory be for a blessing.

Crying Over Spilled Milk

When not causing her mother to cry over spilled milk, Charlotte can be found helping with household tasks. Here she assists with folding the laundry. Moments later she folded Daddy's underpants using only her head.

Not everything at our house is beautifully written prose. Not every day is full of good grammar and good fun. Some days I just can’t take it.

Before you read any further, I want to clarify—this is not a complaint, though I think sometimes we certainly have a lot to complain about. Nor is it an attempt to make it seem like our parenting job is any harder than anyone else’s. I simply don’t believe in competitive parenting. No matter how difficult Charlotte’s medical situation can be, we are both always grateful to have our grinning, goofy kid in our lives. But, some days, I do cry over spilled milk.

At least once a day, feeding Charlotte is a battle. I have to hold one or both of her little hands firmly in my hand and put the glass to her lips. If she’s remotely cooperative, she’ll drink. Today’s post-nap snack found a most uncooperative urchin. She ate well at first and then got bored. She began flailing her arms, trying to knock the cup out of my hands. (Keep in mind that Charlotte drinks best from an open cup and does not feed herself. When she knocks the cup, it’s a mess.) I took one hand, then both hands and tried to get her to drink. She threw her head around, like a horse does when it really doesn’t want to follow your instructions, in order to avoid the cup.

We took a little break and Charlotte munched on a crunchy. Then I tried again. She flailed and tossed again. Then took a sip, and then tried to remove the table from her chair. She can pull the table off of her Stokke and if it were to fall, she’d get hurt. I had to sternly tell her “no.” She laughed. We tried drinking again.
This time, Charlotte was more violently opposed to drinking and managed to knock the glass pretty hard, dousing herself.

I lost it. I ripped the bib off of her neck and pulled her out of her chair. As I put her into her baby-zoo (playpen), I started to scream and cry hysterically. So did Charlotte. I turned away from her and screamed to no one in particular that I just can’t take it anymore. There we were, mother and toddler, each crying hysterically. Charlotte mostly wanted out of her baby-zoo so she could go rescue Mommy Kitty (who I had tossed across the room during lunch because she was distracting baby). Once she had Mommy Kitty, she was just fine. She’s playing nicely now, stopping every now and then to say “Ba ba ja dee da da.” As for me, I was literally crying over spilt milk. I eventually stopped crying, but, no, I’m not just fine.

This eating problem and reflux make parenting un-fun every time we sit down to eat. Philippe and I love to cook and enjoy good food. Yet, we fight daily with our baby to get her to eat. I worry that she'll never enjoy a gastronomical experience the way we do, that she'll associate eating with her mommy's distress and anger. This is not something that goes away overnight, as normal as we work to make our lives feel and appear.

How many of my dear readers have to feed their kids this way? How many of you clean up vomit daily, after watching your kid bring it up in a painful, violent manner—we’re not talking stomach flu, we’re talking violent retching. We’re talking about the body basically rebelling. And then, the kid smiles when it’s over. She’s truly amazing. Do you have any idea how hard this is if I don’t tell you? Consider this a reality check, sent with love and gratitude that you’ve read this far.

Well, Charlotte’s pump is just about to finish her snack. What does the end of snack time mean? Well, it means just two more hours until dinner.

Martinis, anyone?

Flavor of the Week and...

and, I'm going to use my "mommy perogative" and brag a lot about my brilliant, wonderful, adorable kid.

Flavor of the Week: Tuna Fish. Well, actually Charlotte sucked the tuna fish out of my sandwich a couple of weeks ago and asked for more. Today I made tuna salad (with mayo, tarragon, white pepper, and celery) and gave her some on a fork. As the picture shows, she was delighted with her tuna and with her macaroni and cheese. She also munched on a strawberry.

RIDDLE: If a kid eats tuna with one hand and mac-n-cheese with another, is she eating tuna casserole?

Speech development of the week: Charlotte finally responded correctly to the question “What does a sheep say?” She’s been saying “ba ba” for months now, but not making the connection between that sound and the white fluffy farm animal. Yesterday on her changing table she said “baaaa” quite enthusiastically, holding the “aaa” sound for effect. She repeated this feat for Sara, her physical therapist, today. Other animals sounds Charlotte can do on cue (when she’s in the mood): cat, monkey, cow. I’m looking for a tape recorder so I can post an audio clip. Stay tuned.

Gross motor development: Charlotte runs. Sometimes she careens and wipes out. Kind of funny. She usually gets right up, giggles and keeps going. Going around corners is particularly difficult. And hysterically entertaining.

Fine motor skills: (posting this just in case Cheryl, her OT, is reading). Charlotte’s Early Intervention annual review was on September 26. On that day, she was not yet able to stack things or use a peg board. On September 27 she began stacking. She can put 2 and 3 items on top of each other. And she likes to put one of her friends on top.

Just last week she began putting pegs in a peg board.

And she loves to color.

Finally, if you’re worried about the child of this SAHM (stay-at-home-mom for the acronym-impaired) having mommy-separation anxiety: On Tuesday when I left to go meet Philippe for theater, Charlotte waved goodbye to me and closed the door on my butt, grinning all the while.

"Doctor"

As we left the house today, I told Charlotte where we were going. Then I said, “Where are we going, Charlotte?” And she said, “doctor.” Yep, one of Charlotte’s first recognizeable words is, fittingly, “doctor.” Okay, it sounds like “dek-ter,” but she’s working on it.

Charlotte met Dr. Z, her pediatric opthomologist, today. Like Philippe’s, Charlotte’s left eye droops and wanders a bit when she’s tired. Dr. Salem, her pediatrician saw this at Charlotte’s 15 month check up and, using the conservative wisdom she always does, sent us off to Dr. Z.

Bottom line: Charlotte’s eyes are perfectly centered (i.e., no wandering) as demonstrated in the super-close up photo the technician took (but is not allowed to e-mail to me. “We take pictures for our records, not Mommy’s photo album,” said Dr. Z. Okee-dokee.) She is far-sighted within normal limits. Did you know that all babies and toddlers are far-sighted?

Charlotte was a trooper. We arrived a few minutes early and she played contentedly in the waiting room. They had one of her favorite toys—a board with wires along which are wooden beads that she can play with. (I have no idea what this toy is called.) She was entranced for 10 minutes. Then we read books. She said “doctor” spontaneously several times so I’m pretty sure she knew we were waiting for a doctor.
In the exam room, Charlotte played with a smaller version of the same toy and with a stuffed dog and Pooh bear. Then she sat nicely on my lap while the technician looked at her eyes with a light.

Dr. Z came in and also looked at her eyes. Then, Lisa put drops in Charlotte’s eyes to dilate them. She did not like that at all. We spent 30 minutes getting Mommy breakfast (Charlotte ate some of my scrambled egg. Yippee!) and then went back.
This time Dr. Z looked at the back of Charlotte’s dilated eyes with the magnifying lens tool and a bright light. Baby sat on my lap and squirmed and flailed. But, she was pretty patient all things considered.



It was a long appointment and little sweetie fell asleep in the car almost immediately.

Flavor of the Week

It's not all high-brow around here. Spaghettios. Pureed. Yum. She ate at least 2 teaspoons. Woo hoo. Somehow I feel like I should apologize to Jennifershmoo, writer of Vegan Lunchbox. I hope she'll understand that we each have to feed our children what they'll eat :) !!

She also likes

Israeli couscous. She eats it one piece at a time. Actually, I'm not so sure whether she likes it or sees it as a great delay tactic. She did eat about a teaspoon o it.

So, is it odd or sad that when my 17 month old (17 months today, ya'll) eats 2 teaspoons of food I'm OVER THE MOON? Geesh.

Cardiology Update

CARDIOLOGY UPDATE
Charlotte had her cardiology check up today. We’ve been a bit concerned because she sleeps a little bit more than an average toddler her age (14 hours/day to the average 13/hours a day). But, we weren’t too worried because she has no other symptoms—she doesn’t fatigue quickly, her color is good, and she keeps up with the other kids on the playground.

Today, Charlotte actually sat still—sort of—for her echocardiogram (ultrasound of the heart). She fidgeted a bit, but I curled up on the table around her, held her hands away from the ultrasound wand, and kept reminding her to watch Dora. Dora the Explorer, if you’re not familiar, is a lovely bilingual cartoon character who goes on adventures with her pet monkey (?) Boots. Charlotte doesn’t watch much television, but at the hospital we always watch Dora.

She started to scream during her ECG. This procedure takes all of 5 seconds. However, attaching the very sticky black stickers all over her chest, legs and arms is challenging. And removing them can be painful. Think duct tape. Anyway, Nurse Extraordinaire Toni kept Miss Charlotte entertained with some superior bubble blowing while Brenda and I got the stickers off.

Once Dr. Young had read all the reports, we met with her. Here’s the upshot:
Charlotte’s gradients (percentage of blood flow going left and right) have shifted again, with less and less blood going to her right lung. We expected this as it has happened at the past three exams.

Since it continues to devolve, we’re going to schedule a balloon angioplasty in the next month. Basically, Dr. Young wants Dr. Pophal to take a look at the conduit and valve from the inside, using a cardiac catheter. While he’s in there, he’ll open up her restricted artery as best as possible with balloon procedure. If you recall, we did this in August 2005. It is our best bet to delay open heart surgery as Charlotte begins to outgrow her “parts.” It’s an outpatient procedure and, if I recall correctly, we were home by 9 p.m. last time. Will keep you posted.

Additionally, Charlotte has been taken off Lasix. Only 3 medications of the original 7 (or was it 8).

PICU REUNION
While in the Cardiology waiting room, we ran into Patrick, the little boy whose room was next to Charlotte’s in the PICU last summer. Patrick was recovering from repair of complete AV canal defect. He was older than Charlotte at his surgery and had already suffered from severe reflux necessitating an NJ-tube (bypassing his stomach completely). The team was having a hard time weaning him from the respirator and things seemed, to us, touch and go. When his mom, Mary, recognized us, I was happily surprised to see a big, pudgy baby Patrick. He’s recovering slowly but beautifully, and he too has progressed to a g-tube. A little PICU reunion can be good for the soul. Hi Mary! Welcome to the blog.

Flavor of the Week

Flavor of the Week

Charlotte LOVES smoked salmon cheese cake. Go figure. She licked and sucked her spoon as if it were a lollipop.

(And, yes, she does have other bibs.)

For a kid who doesn’t eat, we sure do get a lot of pictures of her eating. Tee hee.

On smoked salmon cheesecake: The recipe is by Jeff Nathan, my sister's neighbor and friend, from his book Adventures in Jewish Cooking. As most of you know, I like my bacon cheeseburgers too much to keep Kosher, but with Jeff's two cookbooks, I've been doing a LOT of kosher-style cooking recently. The cheesecake can be cut into one-inch squares and frozen.

Early Intervention Update

Charlotte's Early Intervention team came today to deliver their annual review. We met with Charlotte's Occupational Therapist, Speech Therapist and Physical Therapist as well as her coordinator. Her Developmental Therapist faxed his report.

The bottom line is this--were Charlotte to be evaluated today she would not qualify for services. A year ago she was +30% delayed in speech, feeding and gross motor skills. Today she is within normal limits for her age (birth or adjusted) for everything. We're a bit concerned that her spoken language is not a strong as her comprehension, but the team is not as worried.

So, we're continuing with a quarterly OT eval, dropping to monthly PT and changing from weekly feeding therapy to bi-weekly speech therapy.

It was a lively and fun meeting. Our team genuinely adores Charlotte--their evaluations refer to her as beautiful, engaging, adorable (well, she is, isn't she?!)--and they are thrilled with her progress. They also had some lovely things to say about us and the job we're doing with her. I won't elaborate because I'm not one to toot my own horn, but I will say that I was proud and quite touched.

We enjoy having these professionals work with Charlotte because Charlotte lights up when she sees any of them. They really are her team, her first friends, and she knows it. As we told Cheryl, Laura, Sara and Elizabeth, our success is theirs because their support, guidance and humor have been essential in getting us through the hardest moments.

We were also reminded tonight of how fortunate we are as Charlotte's OT spoke. Charlotte has not OT concerns (fine motor and shoulder girdle). Given her reflux and feeding disorder this is, apparently, unusual. The skills that one uses to eat are essential in understanding one's body in space (sensory issues), fine motor skills, and muscle development. That we've avoided any major delays or problems despite the feeding disorder is perhaps pure luck. Something more to be grateful for tonight.

***

In our moment of gratitude, we pause to think of Phil's classmate's son Leo and his battle with an inoperable brain tumor. I invite you all to read a bit of Leo's story and please keep him and his family in your thoughts an prayers.

You're Never Going to Believe This

Sometimes a picture is worth a thousand emotions, too. Charlotte took several willing bites of pureed pizza yesterday and today. And, as you can see, she picked up her little training feeding stick (I have no idea what to call that thing) and, while I was in the kitchen, started feeding herself. My eyes welled up. It was amazing. I don't remember the last time she was interested in feeding herself. Today she nibbled on a chicken nugget, a food she loves but that she hasn't touched in over a month. While you can't see it in this not so great photo, she was really happy with herself. The more I grinned and clapped, the more she ate.

So, she can do it and she will do it. It's matter of getting her to do it consistently. One day...

Gaining weight but her pants still fall off

Charlotte has had a runny nose since Saturday and spiked a little fever in the wee hours of Monday morning so I took her to the doctor this morning. We ruled out ear or bronchial infections and decided that she just has a cold and her molars are erupting. The molars are really painful looking—you can see the four corners of the tooth, but you can also see the pink gum in the center. It makes me cringe just thinking about what has to happen to have the tooth come in fully.

But the real reason I’m writing is to update her weight:

22 lbs. 3 oz.

That’s Charlotte’s current weight. That’s up 4 ounces since August 28. I feel like we can watch her grow, she’s catching up so fast.

M3

Today’s episode is brought to you by the letter M and the number 3. M because Charlotte discovered a new syllable “Ma” and has said nothing but that (okay, I’m exaggerating) all day. She says “Ma Ma Ma” and I smile. So she says it again. You can see how the cycle goes. It’s pretty cute and funny.

The number 3 because at dinner she willing opened her mouth and closed it around her spoon for 3 bites of puréed pizza. What is puréed pizza? It is high on the list of things I thought I’d never feed my child—a slice of white bread puréed with .25 c. Ragu cheese sauce and .25 c. canned pizza sauce. How delicious!

And, yes, Charlotte does watch Sesame Street. About 15 minutes at a time while I’m using her leg immobilizers to stretch her hamstrings. Usually just in time for Elmo’s World. Just ask her, she can sing the “la la’s”.

Feeding Team Update

Charlotte and I visited Milwaukee today for her periodic check up with the CHOW feeding team. We met with Dr. Long (behavioral psychologist), Midge Kirby (nutritionist) and Amy Delaney (speech therapist). Then Charlotte had a check up with Dr. Blank (GI).

Charlotte was hungry—we sat down to feed her at 11:40 a.m., 40 minutes past her lunch time and 10 minutes into her nap time. She drank her Pediasure very nicely from the sippy bottles I’ve been using. She pretty much refused to eat any solid food for me. When Dr. Long took over she did take some willing bites of solid food, but not many. Given that it was nap time, she was very enthusiastic and happy.

Dr. Long is concerned that Charlotte is on “solid food strike,” as I call it. She’s never eaten more than a tablespoon at a time (with one very memorable exception), but in the past few months, I’ve been lucky if I can get ½ teaspoon into her at any meal. I’ve tried the technique of boring her with the same food for a period of time. It worked once for a brief period. Now were back to nothing measurable. Dr. Long is also concerned that Charlotte is not feeding herself. Me, too. Mostly for my own and Philippe’s sanity.

So, our new feeding strategy is to a) offer her only solid food (in the form of super-caloric purées) for 5 minutes before we even bring the Pediasure to the table, and b) encourage her to hold her sippy bottle or cup and her spoon. Also, I’m going to try the more robust recipes (like pizza, refried beans, etc) to see if the stronger flavors are more appealing. Apparently that works with some reflux kids.

Dr. Long also mentioned the possibility of doing a residential program or what I call “Feeding Boot Camp.” Charlotte and I would be resident at CHOW for 2 weeks. During the first week, a behavioral psychologist would feed all meals and I would watch from behind a one-way window. Then we’d transition to me feeding Charlotte. Dr. Long said that in kids like Charlotte—who have no anatomical or medical reason for not feeding themselves—the success rate is as high as 90%. She didn’t mention the reflux at all, though I think we all agree that it is real. The wait list is about a year for the residential program. We’re adding Charlotte’s name and hoping we won’t go, but it’s a real possibility.

Amy agreed with my concerns about the disparity between Charlotte’s receptive speech and her expressive speech. Quick definition: Receptive refers to what she understands; expressive to what she articulates in words.

Charlotte’s receptive speech measures at about 20-21 months. She can follow 2-part commands and she understands everything you say to her. She’s already laughing at being reprimanded (lucky me). However, she’s measuring 12 months in expressive speech. Beyond babbling, she makes no deliberate words. We think she means “cat” when she says “ba” because she looks right at Miles every time. Same thing for “pa pa” and Phil. But, that’s not quite where we’d like her to be. Two speech therapists have told us that keeping a bilingual home is not delaying her speech (Apparently this is an old wives tale. Makes sense to me; something we parents can tell ourselves so we don’t worry!)

Now, speech acquisition is a funny thing. Some 10 month old have 10 words but then don’t speak in even simple sentences for another 10 months. Some kids don’t speak until they can form sentences. It’s like reading—if there is no reason why they can’t learn it, they will. But the range of time it takes is huge. So, we know she will and soon. She babbles up a storm; full babbles sentences with intonation and everything. New sounds every day. And we’re so ready to hear what she has to say. The plan—to drop feeding therapy for now and have Laura come twice a week to concentrate on speech. If we can work out the schedule…..

Dr. Blank didn’t have any real commentary after her check up. Charlotte’s reflux is as controlled as we can get it, I suppose. She’s growing well (10 grams/day per their calculations). She’ on the growth chart! 25th percentile! All that is, medically speaking, good news. She concurred with the team’s other thoughts.


That’s it from Milwaukee. We go back in 2-3 months.

Losing Shoes

Charlotte lost a shoe today. I'm totally bummed. It's a really cute pink shoe with a green dragonfly on it. If you find it, please let me know. We were bike riding and during a rousing game of "push the tush" (in which Charlotte pushes my tush with her hands while I ride the bicycle) she must have taken a break to pull the shoe off. The shoes were a gift from my grad school buddy (my only grad school buddy from Northwestern) Danielle. I'm very, very sad.

Oh well. It's just a shoe.

And, check this out, Charlotte has started wearing her pump in its little napsack. This is a huge accomplishment for me because it means I don't have to a) chase her around with the pump during feeds or b) plop her in the baby zoo while she pumps. If I put the blue ice in, though, she topples over backwards. It's kind of funny. She was toddling all around a birthday party today. Just a little weeble that one. Actually, as you might notice in her swagger in the "aft" picture, I think she may have a future on the runway.

Today's Stats

What Charlotte ate by mouth at breakfast: 85 mls. and about 1/2 teaspoon cottage cheese
What Charlotte ate by mouth at lunch: 140 mlls. and about 1/2 teaspoon peas
How much Charlotte vomited after breakfast: About 120 mls.
How much Charlotte vomited after lunch: About 120 mls.
How many pairs of pants Charlotte wore today: 3
How many shirts Charlotte wore today: 2 (better bib at lunch :))
How many outfits Mommy wore today: 3
How many times Mommy mopped the floor: 1
Cleaned the china cabinet: 1
How many times we read Here Come Poppy and Max: I lost count
How many times we read Bark, George: 6
How many times Charlotte said "Bark, George" (arr oorr): 10
How long Charlotte napped: 2 hours
How many loads of laundry I did (not folded yet): 3
How many times we talked to Philippe in Belgium: Not nearly enough

Read More, If You'd Like

I've posted a draft of an essay on foods we feed Charlotte over at Charlottesmom.livejournal.com.

I'm hoping to place or publish this somewhere, so I'm using Charlotte's Journey Home to invite your comments and critques and questions.

Click here and read on!

Feeding update

For your reading pleasure, and an update/reminder about Charlotte's little peculiarity (her eating issues), here is the text of my email to the Wisconsin feeding team:

So, Charlotte is rather incredible these days. For the past week, she's been taking 70-90% of all Pediasure offered by mouth. She's back on solid food "strike"--she lets us touch her lips with the puree and takes a bite or two every day. She likes to nibble things she can hold or bite herself, but doesn't eat anything appreciable. Purdue popcorn chicken and all Costco samples are her favorites. Seriously, she'll eat more solid food while sitting in a cart at Costco than at the table. Yesterday she ate about 2 teaspoons of 7-layer dip, some off my finger (!). On Sunday she chomped on a wonton-wrapped fried shrimp in sweet-hot sauce.

She thinks food is fun--she likes to put it on top of her head, in her ears, on her nose. She very much likes to feed me Goldfish crackers, then open my mouth to see if they are still there, then put another. She'll drink the Pediasure to get to the Cheerio or cracker she's dropped in. She puts food in her mouth and takes it out if the bite is too big or if she changes her mind. She mostly smiles during meals. She always wants what I'm eating, even if it's a grocery store sample (today it was a bite of steak at Whole Foods) or a turkey and mustard sandwich (seriously, she loved it). She drinks a lot of water when she's playing hard. And she wants my coffee (I don't give it to her).

Here's the odd stuff:
8/2 thru 8/12: She took only 20-50 mls. of Pediasure by mouth at breakfast. We'd complement the rest by tube. Then she'd vomit horrifically, ending with what I call the reflux "death rattle" cough/gag. She was recovering from an ear infection and was on Amoxycillin at the time. We decided to serve Mylanta with breakfast for a week and moved her regular meds to later in the morning. We did this for a week. So...
8/13 thru 8/19: with Mylanta at breakfast, her intake steadily increased in the morning, the vomits went away. She vomited after lunch instead.
At the same time, her nap was switching to once a day.
8/19 thru 8/20: No more Mylanta at breakfast; meds back to regular times. Lunch vomited steadily increased. Nap cemented at 11:30 a.m. for 2-4 hours so...
8/25 thru today: At 10:45/11 a.m. we give her whatever she'll take orally. We finish the feed after her nap. Over the weekend we were unable to complement to finish because we had to be in the car and pumping her in the car is a recipe for disaster. Yesterday she took 100% of b'fast and lunch/snack by mouth. Lunch vomit solved. But, vomits have moved to after dinner--—usually 1.5-2 hours after dinner so s,in bed and her sleep is seriously and painfully disrupted. It's hard to hook her up for a night feed b/c it takes her a long time to settle down and we're spooked about another bed vomit.
*I'm going to try giving her Mylanta with dinner for the next week and see if that helps. She doesn't get p.m. meds until 1 hr. after bedtime, so there's no med conflict.

Charlotte's stats as of yesterday: 21 lbs. 14 oz., 31.5 inches, head= 45
She did have shots yesterday so that is a likely cause of last night's fiasco.

Charlotte's behavioral psychologist let me know that she's fowarding the note to a GI for consultation on the vomiting. Midge, her nutritionist, will get back to us in a week or so.

I'll keep you all posted.

A Bit of Self-Promotion

If you like reading Charlotte's Journey Home, but wonder what else I write about and how to read it, follow this link: http://charlottesmom.livejournal.com/

I call my LiveJournal site "The Other Side of Charlotte's Mom." Charlotte occasionally makes an appearance as a catalyst for my musings. Mostly, though this is an outlet for my creative non-fiction writing.

Feel free to comment, share, rant, whatever.

Did you know that someone starts a new blog once every 18 seconds? Or is it that 18 new blogs are started every second. Something crazy like that.

Good night all!

Adventures with Charlotte

Happy Birthday, Bamma!

Charlotte has had many, many adventures since I last wrote. I’m not sure where to begin so I’ll just go in chronological order.

Occupational Therapy: Charlotte had her quarterly evaluation last week. She still tests at her birth or gestational age (15 or 14 months) for fine motor skills and shoulder girdle strength. Cheryl will keep monitoring her, but is not recommending therapy.

Dentist: We met Dr. Charlie Czerepak last week. Because of her acid reflux, Charlotte had her first dental appointment earlier than most toddlers. Dr. Charlie was adorable with her—he came into the waiting area and talked to me for a minute. Once Charlotte smiled at him, we went into the exam room. Charlotte sat on my lap and Dr. Charlie examined her many teeth (seriously, I’ve lost count) by quickly brushing them. We chatted about dental hygiene and that was that. We’ll see him again 4 months. Meanwhile we’re trying to get the urchin used to twice daily brushing.

Eating, Vomiting: Charlotte is steadily taking in 50-70% of all Pediasure that we offer orally. Fore two weeks she vomited every day after breakfast. This week she’s decided it’s more fun to vomit after lunch. But, we’re holding steady at one vomit a day. I’m working on a strategy to reduce even that.

She’s not doing much with solid food at all, not even her favorites. Okay, that’s not exactly true. She’ll nibble a crumb of a chicken nugget. Cheese and hotdogs get plastered on her forehead or on the top of her head. Goldfish crackers are especially good for tickling her ears.

And, her newest trick? Well, she likes to feed me! She methodically places a cracker in my mouth, watches me chew, and opens my mouth to see if the food is still there. If the food is gone, she puts another cracker in. This can go on for minutes on end. She giggles a lot!

Other adventures: The fun stuff. Well, Charlotte has finally shifted to one nap a day. So, we can do some fun things. Last week we went to Fantasy Kingdom—a big indoor playroom with a castle, village and dress up. Today, we visited the butterflies at the Peggy Noetebart Nature Museum. I don’t know who had more fun, me or Charlotte.

Charlotte crashed Eli's Bar Mitzvah party on Saturday. Our friend Carol gave in to the little monkey (Charlotte, not Eli) and gave her an entire balloon centerpiece. As you can tell, Charlotte was in heaven. She walked around the room forever, getting tangled in the ribbons, falling down, standing up, and moving on. Giggling, giggling, giggling.

And, Daddy and Charlotte had their first coloring session together. Daddy drew a kitty cat. Charlotte loved it. She drew scribbles. Daddy loved it.

We’re having a blast!

That’s about all I can think of.

Toddling Along & Loving Monkeys

Now that Charlotte is walking, I swear I'm too tired at the end of the day to think. She keeps me on my toes, literally! She's quie entertaining. Here she is taking a break during parachute time at Gymboree. (That's a bubble on her ear.)

Brief medical updates:
--Following her ear infections last month, Charlotte has developed a yeast infection. Philippe noticed a diaper rash last weekend. It kept clearing and reappearing. Finally, last night, it came back with little white dots on it. I'd been warned by my pal Darshani to keep an eye out for this when Nitara developed a particularly virulent yeast infection. Yeast is not an uncommon reacton to antibiotics for any toddler. It can be pretty nasty for a g-tube kid if the stoma gets infected. Fortunately, due to Nitara's recent experience, I was on the look out. Short story long, we've now got little baby lubed up with Lomotrin (yep, the athlete's foot antifungal!) and Dr. Smith's Diaper Ointment. Dr. Smith's smells like the eraser on a brand new pencil and makes me think of elementary school! I've also given her two doses of Florastar. All symptoms have already begun to abate.

--And...drumroll please...Charlotte now weighs 22 lbs. If you haven't been keeping track, that's a full pound since 7/25! Grow, baby, grow.

--Charlotte had her quarterly Occupational Therapy evaluation today. She's still right on target with fine motor skills for her adjusted age (14 months).

Other news:
My brother, sister-in-law and niece visited last week. Hal & Sue stayed for a weekend. Taylor was here all week. (Another reason I've been an absentee blogger--we had so much fun and were up pretty late every night. And, when there is a 14 year old in the house, don't expect access to your laptop :-) ).Charlotte and Taylor had a blast together. I had oodles of fun just watching them. And, Taylor kicked my sorry tush in Boggle!

We took Charlotte to the zoo for the very first time. Charlotte loved the monkeys. She cried when we left the primate house. Then the pigeons distracted her!

I'm hoping to have more pictures and maybe some video to post once the Goldmans have a chance to burn a DVD for me.

Walking is FUN

I was going to update the blog this morning to note that yesterday was a DWOV. No vomit whatsoever.


But, then Charlotte trumped that update! First, I put her into the baby zoo and she took about 5 steps away from me, on her own with no prompt. Later, she walked from the couch to the bookshelves, on her own with no prompt, about 20 steps. Finally, she walked from the front door into the kitchen. I lost count how many steps that was. She looks like a grinning Frankenstein.

So, Charlotte's stats for today:
Number of times she tried to put food in her ears: 14
Number of teaspoons of solid food she had for dinner: 2 Number of tunnels crawled through at Gymboree: 2 tunnels, 5 times each
Number of times she had me read Five Little Ducks: 5 Number of times we read Here Come Poppy and Max: 3
Number of times she finished the triangle, square, circle puzzle: I lost count
Number of times med port opened (yuck): 1
Number of times changed clothes: 1 (see above)
Number of unbridled giggles: Countless

Other important stats:
Weight (as of 7/24): 21 lbs
Number of teeth: 10 that I can see
Height: 31 inches (tee hee, now that she's walking, we can say height rather than weight)
Number of meals Charlotte ate 100% (no tube supplement) in past 7 days: 2

Happy August indeeed!

Caption Contest

This picture was taken sometime in April and I'm still so in love with it. As Charlotte continues to run for mayor of every establishment she enters and she chats with each and every stranger who passes her, this photo seems to really capture her outgoing personality.

So, dear readers, offer up a caption for this photo. There will be a prize. Don't know what yet. Maybe an autographed photo of the little tyke.

It will be more fun for all if you leave your caption as a comment (you'll need to sign in to Blogger, but I don't think it's something to worry about), but you can email them to me.

Deadline: Wednesday August 2

The judges will convene and announce a winner shortly thereafter.

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.