A Photo Gallery

It feels like we've been in constant motion for the past 10+ days. Or, maybe it's just that Charlotte is in constant motion. Even in her crib right now.

I finished grading papers, submitted final grades and then jumped right into a freelance writing job (my first! yippee!). After that I finished editing a book chapter for my first academic publication in 8 years. Turned that in yesterday at 6:45 a.m.

There were many, many bloggable moments that I swore I'd remember, but have of course forgotten.

I hope the pictures will help you all to forgive my irresponsible blogging!

Charlotte always takes time to smell the flowers.

We're making "appa-fuj" cake. Hey, Chuck and Julia, it did rebake just fine. And Charlotte spent about 30 minutes saying "Bye bye Chuck and Julia" after you left!

Proofreader in training. May 29, 6:30 a.m. Yes, the morning I need her to sleep until her usual 7 a.m., she wakes up as I leave my room at 6:05 with a resoundingly enthusiastic "Hi Mommy!"

Playdough! Playdough! (Mommy's first attempt at the homemade stuff!)

Sometimes she even sits still!

"Play bathtub in the back yard. Splish Splash."

Okay. Caption contest time. Philippe LOVES this picture!

Feeding Clinic Visit

Hey, Bamma! Do you like this picture better?

Charlotte and I made the trek to Wisconsin yesterday for her first post-surgery follow up with the feeding team. It is an understatement to state that they were amazed at Charlotte's progress.

Charlotte drank nearly 5 ounces of Pediasure while she was there, and ate 3.5 ounces of Gerber Organic bananas (yes, you read that correctly!). She also shoved about 1 teaspoon of mango into her mouth and chewed it up beautifully.

She is still not chewing very well, so we're going to work on this with something called a Chewy Tube, a device that we put on her molars and use to practice chewing.

Amy, the ST, and Dr. Long, the behavioral psychologist, spent about 10 minutes doing therapy with Charlotte. As you'll read below, I'm already seeing results.

Bottom line, the team was so excited about Charlotte's progress that we're going to try to "ride the wave." We'll be heading up to Wisconsin twice in June and twice in July. If we get it right, we might be able to avoid in-patient "boot camp."

So far today, Charlotte drank 7 (out of 8) ounces for breakfast and 5.5 ounces before her nap. She's opening her mouth really big for the spoon and ate about 1 tablespoon of applesauce and a bit of peanut butter and jelly sandwich for lunch.

Children's Memorial (New) Hospital Update (& blatant appeal!)

Many of you (who live in Chicago) may already know that Children's Memorial Hospital is in the midst of planning an incredible improvement to our plant and facilities--we will be building a brand new hospital, adjacent to the new Prentiss Women's Hospital at Northwestern Memorial Hospital. CMH will remain a completely independent entity, but the proximity to NMH will benefit patients in terms of proximity for research collaboration as well as the maternity ward.

Once the hospital opens in 2012, mom like me will not have to be miles away from their children while mom recovers from birth and newborn gets critical care.

Kids like Charlotte will benefit greatly from having pediatricians able to easily collaborate with adult specialists. As care and corrections for congential heart defects has improved, the U.S. now has more adults with CHD than children. As I've heard a lot of heart folks say, "It's a great problem to have!" And it means we need to learn more about how to ease kids like ours into adulthood.

Here are some specs on the new hospital:
- There will be 276 inpatient beds in the new hospital. That is a 12% increase from quantity of beds now. However, it will give us a 25-30% increase in Patient Day Capacity. This is because all of the rooms are private - therefore, there will be no restrictions on who can occupy a room.

- Each new room will be 290 square feet and private - with room for the patient, their families and the doctors/nurses. Currently, the rooms are 125
square feet with multiple beds. Huge improvement!!

- There will be 25 procedure rooms - compared with 20 today. There will be
42 bay emergency rooms - compared to 26 today.

- The hospital will be 21 stories. There will be a sky lobby on around the 14th floor. There will be an outside garden area.

An endeavor like this is impossible without philanthropy. Please think about clicking here and participating in this amazing improvement for our already incredible pediatric care in Chicago. There is an area where you can "earmark" your donation for the new hospital or any medical service that compels you.

Happy Mother's Day

There has not been a dull moment in the past two years. I've learned so much from being Charlotte's mother that I'm not sure I could relate it all.

But, on Mother's Day I want to tell you all a little about the mothers I know. You see, I don't believe in competitive parenting. Philippe and I know parents who have children with more complicated medical demands than Charlotte and we are amazed with the grace and fortitude they bring to their lives. We know parents whose children are blessedly healthy and who have their own struggles to get through.

Parenting is an experience we can share with each other, but that no two families are the same and comparing our struggles to yours is counterproductive.

Here's what I've learned, then, from the mothers in my life, in no particular order:
(I'm naming a few mothers, those who have made their mothering public already. The rest of you will be mostly anonymous. You'll recognize yourselves, I think, but I'm not going to identify you.)

I have many mommy friends. They juggle so much in a day it leaves me breathless. I have a friend with four children ages 6 and under. Her house is a whirlwind of activity. Her children are bright, beautiful and energetic. I'm not sure how she keeps up her energy, but she always has a smile and a hug for Charlotte.

I have a friend with 2 typically developing kids and a child with sensory integration disorder. She manages to maintain a balance between the energy spent on her challenged child and that spent on her other two. And she manages to keep a (very sardonic) sense of humor. She's recently added a part time job to that!

One girlfriend has an almost two year old and is pregnant with her second. She works fulltime. And her mother is struggling with a life-threatening illness. Yet, she always has time to return my phone calls and chat.

These friends teach me about balance and humor, two things easily lost by a mother (as easily as keys and sunglasses), but most needed and hardest to replace.

My newest girlfriend taught me last year that I have to remember to carve out time for myself. When our girls (who are the same age) were not yet walking, that meant taking our coffee to the park, plunking the babies in the swings, and drinking HOT coffee while we chatted. This was a revelation for me. We've been fast friends ever since. When she went back to work last fall I was a bit lonely. But, in listening to her excitement about her job, I learned that I needed to find that for myself. I'm working on it and everyone at my house thinks I'm a happier mommy because of that lesson.

My cousin Lynn, my hero and role model. Lynn is herself a heart patient, having undergone open heart surgery as an infant. She is now a mother of two. Her eldest child is autistic. Lynn's response has been to educate herself and those around her. With her parents and husband, she founded The Faison School, a nonprofit autism center dedicated to providing resources for children with autism spectrum disorders (ASDs) and their families in Richmond VA.

Francie. In response to her son's diagnosis of complex congenital heart defect, she and her husband founded The Saving Tiny Hearts Society. Their goal is to raise money for research into America's leading birth defect, CHD.

Together, Francie and Lynn have taught me that the best reaction to our situations is action. Action that not only helps our own children, but that turns what might have been a tragedy into a bounty for other families.

Thida and Darshani, my online mama friends. Thida struggles with her own movement disorder. She has two children whom she describes this way: a typical daughter and a son with multiple delays who was born with a life-threatening tumor from which he has recovered. Thida is a writer who shares her life via two blogs, and who is working on a wonderful book to help parents deal with time in the NICU.

Darshani has two children who have struggled with reflux, one of whom is g-tube fed, like Charlotte. Darshani maintains a website about her daughter's journey that has been an incredible resource to other parents with reflux babies. She encouraged me to join P2P where I have found an incredible amount of support.

Thida and Darshani have taught me that we can use our experiences to help others. We can turn our struggles into beautiful prose and perhaps inspire other parents. And they have demonstrated to me that sometimes the best friends can be the ones who answer your 3 a.m. emails with a good dose of humor.

My two bestest girlfriends hold my hands, long-distance, better than anyone else. They have 5 girls between them One balances her full time medical practice with a 10 year old, a 6 year old and a 6 month old. She taught me that if you love being a mommy, you just keep doing it! You can imagine her crazy schedule--she manages to be home to meet the school bus and then they're all on the go. But, she knows when I need her and at that just that moment the phone will ring. The other has a 9 year old and a 6 year old whose education she is shepherding through one of the worst school districts in the country, without sending the kids to private school. She inspires me in so many ways. Last year she even let me "crash"her Mother's Day celebration because we needed a girlfriend visit. What these two have taught me about motherhood is only overshadowed by what they've taught me about friendship.

Last, but not least, my mom. Beyond helping me learn to walk, talk and love books, she's taught me the importance of philanthropy, of giving back to the community of which I am a part. (More on our amazing trip to Boston soon.)

Thanks to all you moms. You're the greatest.

p.s. If you're not seeing yourself here, it's because I needed to stop somewhere so that this post didn't become so long that no one read it!

Happy Birthday, Charlotte!

May 2005. Children's Memorial Hospital. Chicago IL.

While so many days in the past two years have crept by, seemingly interminable, the years themselves have flown at warp speed. Our fragile, broken-hearted little girl has blossomed into a vivacious, playful, bright toddler, as regular in appearance as she is extraordinary in her reality.

May 2006. Music Class. Chicago IL.

She learns so much each day that it is hard to keep up with her, let alone keep up blogging about her. Surely most toddlers have this lightening approach to learning--the sponge effect. It is awe-inspiring.

April, 2007. At home. Chicago, IL.

My dearest Charlotte,
On your second birthday I wish you joy, love, and much laughter. Though how you could laugh more than you already do, I don't know.

With a heartfelt nod to fellow Mommy Blogger Lemony Lemon because I too dislike the Hallmark guy...

Be two with all of your heart. Not just the heart that thumps strongly after two open-heart surgeries, proving beyond a shadow of a doubt that you are a fighter. Be two with the heart that sees the world filled with love.

Be two with all of your glee. Rejoice in the delightful surprise of the wind blowing, of getting caught in the path of pigeons flapping away, of running in the playground.

Be two with all of your exuberance. Continue to shout to the skies your unabashed adoration of blowing bubbles, kicking a ball, running, puppies, and your Daddy. Shout when you list all your favorite friends, activities and foods. Don't hold back. Not yet.

Be two with all of your wonder. Grab onto that letter B and those ABC cards. Make up songs as you play your piano. Your fascination will take you far. I only hope I'll be able to keep up.

Be two with all of your stubbornness. Standing your ground is important. We'll stop you if you're going to hurt yourself or someone else. Until then, figure out who you are and what you want and need. No one else can do that for you.

Be two with all of your affection. Crawl into my lap with a book or for a cuddle whenever you choose. Wrap your arms around my leg or Daddy's just because we're there. Ask for all the kisses you want (even on those silly, stinky toes). Don't stop. Not ever.

And, as I tell you every day, dance like no one is watching.

We love you in this moment as we will love you in every moment. Your spirit shines so brightly that I can believe that you have been touched by grace. Take that spirit and soar into your third year.

May you grow from strength to strength.

Foot Fetish--A Feeding Update

Play piano! Yeah!

Recently on P2P, the wonderful support website for parents of tube-fed kids, a mom asked if anyone else's kids liked pulling off their socks. Charlotte goes beyond that. She loves to pull of her socks, yes. But she thinks having her feet tickled and "nibbled" is about the best thing ever. We have a blast singing "Boogie-Woogie Piggies."

So, you ask, how is this crazy blogging mama going to segue from feet to food? (Well, my brother is now asking why I have to use big words like "segue" and I'm sticking my tongue out at him!)

Bummer! I'm wearing tights, so I can't take my socks off.

Charlotte has been eating terrifically well, for her. She averages more than 600 mls. daily of her 900 mls. minimum. And she takes almost a tablespoon of solid food each meal. It's not a lot for a regular toddler, but Charlotte is not yet regular in the food department.

Last night she drank her entire dinner, all 240 mls. (8 ounces for you non-metric folks). And, how did I get her to do that you ask? Well, that is where the feet come in. Seriously. She wanted me to tickle and nibble her toes. So, for each five sips she took, I let her pick a toe for nibbling. We did this for a total of 2 ounces. I am not sure how she managed to eat between all those giggles!

On top of that, she's been taking all of her medicine by mouth all week. Last night when Philippe tried to put her meds in her tube, she said "mouth" and insisted on taking her medicine like big kids do. True story.

I never stop moving.

Why all this progress? I don't know. But she has started asking to see my "tubey" and asking us to "take out tubey." I've started explaining to her that in order to get rid of her tube for good she needs to eat. Our daily conversation goes like this:

C: "Tubey out" (a bit whiney)

Me: "What do we need to do to take the tubey out forever."

C: "Eating"

Me: "Are you going to eat like a big girl."

C: "NO!" Big smile and giggle, "Hungry."

Me: "Let's go get breakfast.
C: "Eating!"

Eating indeed!

Virginia Tech--Zichrono Livracha

I can't help but pause briefly and ask you all to do the same. What happened at Virginia Tech has affected me more viscerally than I can explain. Maybe it is because I'm teaching on a college campus these days and back in touch with my academic friends. Maybe it's because I'm a mom. Maybe it is because my eldest niece and my cousins are all on major college campuses. Maybe 9/11 is finally really sinking in for me.

Please take a moment to remember the victims of this horrible, horrible day. Their lives might have touched ours differently had they had the opportunity to fulfill their dreams. Tonight, their lives must touch us as we try to understand how something like this can happen in our United States and do what we can to be sure it never happens again.

May their lives be for a blessing. And may they rest in peace.

This Photo by Karley

Many of you have heard us say that we are blessed to have a bevvy of amazing babysitters and friends who clamor (seriously) to hang out with Charlotte. In fact, Charlotte's very first babysitter practically came home with us from the hospital, our wonderful friend & PICU nurse Samantha.

Karley has been sitting for Charlotte for over 18 months. While Charlotte is just now learning to say her name, the bond between them is clear. (And give the toddler a break, she can't even say her own name!). What I have neglected to tell most of you is that Karley is a photography student at Columbia College. And she is seriously talented (okay, now, I was in the business for a while, so I get to say that).

Now, of course, it doesn't hurt that her subject loves the "tamera."

I've "stolen" this off of Karley's Flickr site, so I can't resize it. Follow the link to see the rest of the photos.

MICkey button saga

The overdue promised update on the two recent replacements of Charlotte’s MICkey button:

As the cardiac surgeons prepared for heart surgery they removed Charlotte’s MICkey button and replaced it with a Foley catheter. I’m not really sure why. It seems this is just what they always do. Logically, Charlotte only needed “egress” from her stoma for a day or two, and she definitely needed the gases to be able to flow freely out. Also, the Foley eliminates any concern about an extension tube coming out or the button itself getting yanked by accident.

In any case, as soon as Charlotte was able to take food by mouth, our PICU nurse replaced the Foley catheter with a brand-spanking new MICkey button. We get a new one every 3-5 months and we were due.

The new button seemed just like the others-it was a little loose, a little twirly in the stoma, and occasionally looked like it was really sticking out far from her tummy (they’re supposed to lie pretty flat on the belly).

A week after the surgery, Charlotte’s babysitter Jenna called me at work, worried that the button looked like it might fall out. She saw a lot of leakage between the button and Charlotte’s tummy. Since we hadn’t really experienced that before and Jenna know what the button usually looks like, I had her tape it down and I immediately made an appointment with the pediatric surgery clinic.

At clinic on Friday March 30, Teri, our surgery APN, measured the length into Charlotte’s tummy (pretty weird—she had a measuring-tape type thing that she stuck into the stoma. I did NOT watch) and decided that the button we had was too long. We (Teri and I) now think this may have been a problem for a long time given that we haven’t taken this measurement in a year. She put in a new button and we were on our way.

All this took, by the way, 10 minutes.

I got home and found that it was very difficult to put the extension tube in or take it out. We had to really push on the thing. The whole weekend was rough—Charlotte didn’t want us to touch the tube because we had to fight so hard to get it in or out. But, we did have to take it out for a bath a few times. We lived like this until Wednesday when I got quite fed up.

So, during our Cardiology check up, I discussed it with the Cardiology APN, Debbie. After a quick phone consult with Teri, we realized that the button itself was likely defective and we made an appointment to have it replaced.

Charlotte and I left Cardiology, went home for nap and lunch and returned to the hospital. Teri replaced the button and we were, again, on our way. But, yes, we did spend ALL day in the hospital on Wednesday.

The new button is perfect. Hopefully it will last for several months!

Heart Update

Charlotte had her first post-surgical cardiology visit with Dr. Young.

Dr. Young was quite pleased with her progress: She's gained weight since her surgery (at the pediatrician's last week she topped out at 26 lbs.). Her heart sounds good and there is only a slight "swish," mostly the sound of blood through the conduit. No regurgitation sounds. And, her chest x-rays looked good.

Princess Charlotte getting ready for her x-ray.

Charlotte was a trooper--she smiled for the camera during her x-ray and most of her EKG. My secret weapon? The camera. Little Miss Diva-in-Training loves having her picture taken. So, we explain that the x-ray machine is a camera and so is the EKG machine.



Also, having a wonderful technician who thinks to have Charlotte help put the stickers and lead on. Pure genious.


Finally, a smile. That wasn't so bad, was it Charlotte?