Sunday at our House

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

Oh well.

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

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

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

On the vomiting front: I don't blog about this often any more, but it's gotten worse again. We're seeing at least one significant vomit a day as well as many gags and mini-vomits. I've written a log of blog entries about this in my mind, but I loath writing about it. I am at my wits' end and end every meal close to tears. Part of our CHOW strategy is to firmly tell her "no" when she gags. I have to yell at her when she's in pain and unhappy because we can't tell when it is reflux or behavior. So, in other words, I have to scare my baby and make her cry. It's breaking my heart.

And what does she do? When I burp (yeah, I do occasionally burp), she pets my chest, looks concerned, and says "Mommy okay." She thinks it hurts me to burp like it hurts her. She is the sweetest child I have ever known. And while I would do anything to change her medical circumstances, I would not do a thing if it would alter her personality.

Gotta go before the tears soak my keyboard.

Feeding Clinic Update

Charlotte and I trekked to Milwaukee yesterday for our twice-monthly updates. Charlotte was excited about the trip and talked and sang the entire way. Bleary-eyed mom was glad of the company to keep my awake!

We visited with Dr. Long and Amy. This time, they went behind the one-way mirror and watched me feed Charlotte. I had thingy in my ear through which Dr. Long could give me direction. Charlotte was eating with gusto at first. Can you blame her? She'd had breakfast at 7 a.m. and it was 1 p.m. Also, she liked the new flavor--sloppy joe (think pureed Manwich). But, it was naptime and she was tired and eating is stressful. So, reflux turned into a massive, I mean massive, vomit, ending with bubbles of bile.

Dr. Long is whispering in my ear to clean her up, reassure her but not say "poor baby," and keep feeding. Charlotte is in my face crying hysterically. Charlotte never cries, by the way, and she's only hysterical when she's funny. I had not slept in 2 nights. So....I finally said back to Dr. Long, "I can't do this." And she came in to feed Charlotte.

We talked about next steps. Basically, more of the same: limit meals to twenty minutes; offer 2 high-calorie purees; alternate five bites of food and five sips of milk; and, my favorite, try not to let her see my frustration. Hah.

We also talked about the possibility of consulting via webcam in a Telemed pilot they're running. This would have allowed for weekly "home visits" because they understand that she behaves differently up there. Unfortunately, since we're in Chicago we're not eligible (they can't practice over state lines, even electronically because they are only licensed in Wisconsin).

For now, we're going back to monthly visits with nutrition consults in between via email.

Charlotte weighed (I think) 29.3 lbs, up from last time. I don't remember her height.

Wanna know what dinner is really like chez Charlotte? Click here for 10 minutes of fun. This is how we're working with CHOW between visits.

ABCs

If a picture is worth 1,000 words, how much is a video worth?



Sometimes she even sings the alphabet correctly. Often, she sings IPO IPO. Perhaps she's projecting something about her future?!

Sound Would Be Superfluous

A quick view of Charlotte enjoying Virginia Beach. I took this with our Nikon digital camera, thus no sound. I don't think you'll need sound to get the gist.

In the Toe: A Feeding Clinic Update

On Daddy's birthday the entire family drove up to Milwaukee for Charlotte's bi-monthly feeding clinic visit. (An aside: Unlike our previous 2 visits, we made it there and back with no automotive events.)

Charlotte and Daddy. Or "Big and little Geyskens," as I like to call them.

As we pulled into the parking lot, I asked Charlotte if she was hungry. Here is, more or less, our conversation:

Me: Are you hungry?
Charlotte: Yes! Eating!
Me: Where do you feel hungry?
Charlotte: In the toe!
Me & Philippe (trying hard not to laugh out loud): Where?
Charlotte: In the TOE!
Me: Oh. Where else? Do you feel hungry in your tummy?
Charlotte: No.

During her clinic visit, she ate more than a quarter cup of pureed taco and some pureed refried bean and to drink all of her Pediasure.



I guess that toe really knows what it's talking about!

----------------

Drinking milk like a big girl. Charlotte loves her open cup. What a mess!

(Check out those biceps!)

And now for the serious part of the update (not that there is much serious about Miss Charlotte): The feeding clinic team is impressed with her eating. They expect that she might wean (or be weaned) off of the g-tube while only eating purees and drinking Pediasure. Chewing may take a while.

Dr. Long is still talking about in-patient weaning, though I dislike the idea more and more (especially during the summer). Frankly, I dislike it because Charlotte and I would be confined to the hospital for 2 weeks. Maybe that would be okay in December once my UIC semester ends, but on a gorgeous August day, yuck. Anyway, we're on the wait list, so it's not terribly imminent. Charlotte may make it a moot point if she continues to eat like a champ.

Her increased vomiting is something we just have to live with. Her meds are dosed appropriately for her weight. Basically, Dr. Long, Amy, and Julie (RN) said that if Charlotte isn't upset by it and is still gaining weight, we should let it be. She'll mostly likely grow out of it.

Charlotte's official CHOW weight is now 28.8 lbs and she is 36" tall. Three feet, baby! The weight gain is a bit low for a month, but we've had a stomach flu and a trip to Virginia, so we'll reassess next week.

Where's Charlotte?

We've been on vacation in sunny, beautiful, laid-back Virginia Beach. We've had the great fortune to be able to catch up with old friends*, visit with family, and celebrate my mother's upcoming birthday.

Charlotte loves VA Beach. Good thing, too, since Philippe and I cannot ever get enough of this place.

She's eating like crazy--1/4 to 1/2 cup of pureed food per meal and often drinking everything she should.

To cut back on vomiting, we've cut the Duocal out of her Pediasure and have reduced the volume by 40 mls. per meal (with the blessing of our dietitian extraordinaire from CHOW).

She continues to vomit, sometimes small volumes, sometimes fairly significantly. We still think we may be giving her too many calories. Did you ever think you'd read that?

Stay tuned for our CHOW visit on Thursday.

*By "old" I am referring to the length of our acquaintance, not the age of our pals

Remembering My Father

Today would have been my father's 75th birthday. It is impossible to believe, even seven years after his death, that he is not with us to celebrate and be celebrated. Throughout all of Charlotte's ordeals and her triumphs, I have been saddened by the fact that she will never know my father and that he never had the chance to know her. Philippe and I like to think that he and Philippe's dad are somewhere watching over their granddaughter.

My father accomplished so much in his life--he was the first in his family to graduate from college, he started his own successful business which my brother continues to run, and he pursued a wide range of philanthropic and volunteer activities within the Jewish community. He once told me that of all his volunteer roles, he was most proud of what he accomplished while serving on the board and as president of the MetroWest Jewish News.

In his typically non-bragging manner, he never told me the details or extent of his work at NJJN. As I spend the day thinking about and trying to honor my father, I'd like to share with you the lovely obituaries that his colleagues at the NJ Jewish News published after his death.

10 July 13, 2000 NJJN – MetroWest July 13, 2000

Paul Goldman, advocate for pluralism and ‘NJJN,’ dies
by Rachel Nierenberg NJJN Staff Writer
Paul A. Goldman, a past president of New Jersey Jewish News and a strong supporter as the paper expanded, died on Friday, July 7. He was 68.

He was born in Roxbury, Mass., and lived in Brookline, Mass., Richmond, Va., and Livingston before he moved to West Orange, in May. Goldman was a contributor to the United Jewish Federation of MetroWest and a member of the William and Betty Lester Society, comprised of those individuals or families who make an endowment of $100,000 or more to the UJF. Because he was born into a family that did not have a great deal of money, Goldman recognized the importance of giving to others and shared his own success by contributing generously to philanthropic organizations.

Murray Laulicht, a past president of UJF MetroWest, credits Goldman with “being the first to present [the issue] of religious pluralism to our community.” In the late ’80s, explained Laulicht, Goldman introduced a resolution to the board of MetroWest federation,“bemoaning the lack of religious choice in Israel.”

As a result, Laulicht said, federation chose to grapple with the issue, eventually passing the resolution, realizing the importance of “solving these problems in our community and around the
world.” It was Goldman’s initiative, said Laulicht, that later enabled MetroWest to take on a role as a “national leader in promoting religious pluralism.”

Goldman served as president of New Jersey Jewish News for three years, from 1995 to 1998.

Recalling the “many mornings” that he spent with Goldman during his tenure as president, David Twersky, editor-in-chief of NJJN, said that Goldman “stood forcefully for the independence” of the paper. Twersky described him as “the strongest advocate for having a New Jersey Jewish News.” Indeed, it was during Goldman’s presidency that the MetroWest Jewish News — a single-edition newspaper for the MetroWest Jewish community — expanded and became the New Jersey Jewish News.

Two editions were added through arrangements with the Jewish Federation of Central New Jersey and the United Jewish Federation of Princeton Mercer Bucks; an increased readership came along
with them.

After Goldman stepped down from the presidency, Twersky said, he “never lost an opportunity...to push his agenda of a statewide Jewish newspaper.”

Amir Cohen, associate publisher of NJJN, said that Goldman’s leadership style was creative and unique; in fact, he “cannot imagine how a better job could have been done.”

Cohen recalled that in 1994, when he joined the staff, Goldman reached out to him at the first board meeting; he was the first board member to do so. That reaching out, he said, was quintessentially Paul Goldman.

“I think the word ‘mensch’ describes him,” said Michael Miller of Morristown, immediate past president of NJJN. Miller said that Goldman was “truly a leader — inspirational and a can-do person. He was charitable, cared about people and cared very much for the Jewish News and the Jewish people.”

David Mulgrum of Bed-minster, board member of NJJN, said that Goldman was a “gentleman to deal with and he will be missed.”

Goldman, a graduate of Brown University in Providence, R.I., was the founder of Paul Arnold Associates, an insurance agency in Livingston. Before establishing the firm, he worked for Markel Service, an insurance agency in Richmond, Va.

He was a member of Congregation B’nai Jeshurun, Short Hills, and a past president of the synagogue’s brotherhood. He also served as vice president and was a member of its board of trustees.

“He loved the temple and he loved music,” said Leslie Sporn of Short Hills, executive director and a past president of B’nai Jeshurun. “He loved to sing.” Goldman’s decision to donate a harp to the synagogue was indicative of the kind of person he was, said Sporn. “He did it to enrich our services.... It was meaningful to him and he knew it would give others pleasure.”

Goldman is survived by his wife, Pam of West Orange; two daughters, Laurie Cohn of Livingston and Ilene of Chicago; a son, Hal of Warren; a sister, Roberta Cohen of Wayland, Mass; and four grandchildren. The harp he had donated to the synagogue was played at Goldman’s funeral service, which was held at B’nai Jeshurun on July 9.

Editorial
Paul
Paul Goldman took over as president of MetroWest Jewish News on July 1, 1995. From the start he exhibited a calm and steady hand at the helm of the executive committee and board, leading the way to a rethinking of the paper’s relationship with the United Jewish Federation of MetroWest. It was Paul’s contention that the paper should be as open as possible to trends, thinking and controversies, and that in reporting as accurately as possible, the newspaper would be making its singular contribution to the Jewish community.

This was not as simple a project as it might now appear. There were certainly those who felt the newspaper should be more closely tied to the federation and those who thought its mission should be subsumed by the federated campaign, some arguing that the paper must therefore avoid divisive stories and opinions that might alienate potential donors.

But not Paul. He established strong working relationships with top staff and made clear his commitment to the professional nature of the newspaper. At the same time, he became closely identified with the effort to reshape Jewish newspapering in the state of New Jersey. During his tenure, and in no small measure due to his leadership, the MetroWest Jewish News evolved into the New Jersey Jewish News, reaching an agreement with the Jewish Federation of Central New Jersey to publish a weekly edition in that community and later with the United Jewish Federation of Princeton Mercer Bucks to publish an edition there.

The goal of branching out throughout the state in order to project a firm, powerful voice on behalf of Jewish interests became almost a personal mission. He was passionate about his beliefs and his commitments, including religious pluralism and liberties; took leadership roles in his beloved Congregation B’nai Jeshurun; was hardworking and responsible to a fault; loved his family above all; and was always a gentleman. May his memory be for a blessing — and may we stay committed
to his goals for the Jewish community and people.

Many, many thanks to Mollie at NJJN for dropping everything today to get this text to me electronically.

Both of the above texts are copyrighted by NJ Jewish News.

780 Days

June 18, 2007

I have been a mother for 780 days, almost to the minute.

In those days, I've laughed with my child, cried for her, held her, changed countless diapers, cleaned up more vomit than I care to remember, and read many bedtime stories. I've been exuberant and exhausted, overwhelmed and overjoyed. But, I've never been bored.

I've watched my daughter recover from 2 open heart surgeries, a g-tube insertion and 2 cardiac catheters (that's 5 rounds of anesthesia, 3 breathing tubes, 2 central lines, countless blood draws, x-rays, and echocardiograms). I've taken her to a feeding clinic, an ENT, an opthomologist, a dentist, a pediatrician, a cv surgeon, a cardiologist, a plastic surgeon (for the helmet), an orthotist (for the helmet), a gastro-enterologist, and a cardiac interventionist.

She's been visited weekly by a physical therapist and a speech therapist. She's been evaluated several times by an occupational therapist and a developmental therapist.

We've been to Gymboree, Torah for Tots, Music Class (en francais), and Art Class. We've been to Belgium, New York City, Wisconsin, New Jersey and Virginia Beach.

Charlotte has taught me so many lessons.

She has taught me to slow down and take notice of the world around me.

She has given me a whole new definition of bravery.

She reminds me daily that laughter can cure almost everything. That it's funny to fall down. That sometimes it's important to say something over and over again. That it's okay to babble just to hear what the words sound like.

I could go on and on.

But today, the 2nd anniversary of Charlotte's homecoming after heart surgery and 49 days in the PICU, I just want to say that most of all, Charlotte has taught me the true meaning of gratitude, faith, and strength. She truly makes our house a home.

In Charlotte's honor, I invite you to follow this link to a search result on the Congenital Heart Information Network website and read about many other families who have been touched by a child born with truncus arteriosus.

Not Quite a Feeding Clinic Update

Hey, Mom, put down the camera and lemme at that pizza and those bananas. At Wolfgang Puck's in the AA terminal at O'Hare. Charlotte ate nearly all of a container of Gerber Organic Bananas and had (and chewed) about 5 bites of my pizza.

We had a flat tire in Racine and had to wait 45 minutes to help. The receptionist told us that the team wouldn’t be able to squeeze us in late (understandably) so, once repaired, we turned around and went home.

I’m trying to reschedule, if nothing works out for this week, our next appointment on 7/12 (the whole family, including birthday boy Daddy).

In the meantime, since you're all dying to know how she is eating: Charlotte is eating like crazy. She’s averaging 2 to 4 tablespoons of puree a meal and getting to 180-200 mls. of Pediasure fairly consistently throughout the day. Midge, the dietician/nutritionist at CHOW tells me that this is 1,200 or more calories a day (her recommended diet is aorund 900 calories a day) and that, based on her most recent food journal, she's taking 90% of those calories orally.

Charlotte and Nemo, the flying fish, get a tour of the cockpit from Christine, our fab flight attendant, after landing in Newark 2 weekends ago.

She’s starting to really open her mouth. I bought some The First Years Take & Toss spoons when we were out of town and they seem to do the trick.

But…she’s vomiting almost daily again. Frequently it’s fairly large (4-6 ounces). Yesterday morning with Laura she ate 2 tbls. of egg puree, 2 tbls. of applesauce, and 200 mls. of Pediasure. about 5 minutes after she finished, she vomited all of it back up. Maybe even more than all of it.


We're working (via email) with Midge and Trina (our RN at CHOW) to make sure that Charlotte's meds are the correct dosage for her weight and then to reduce her caloric intake in case she's vomiting because she's getting too much. Yep, you read that correctly! After 2 years of worrying that Charlotte was not getting enough nutrition, we're finally concerned that she might be getting too much. Hurray!

Fattening, er, Feeding Charlotte

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

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

Yeah right.

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


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

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

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