You've Come a Long Way, Baby!

Well, Charlotte doesn't really have a resolution. As my yoga teachers have encouraged us to do, she has decided that she has some qualities and skills she'd like to work to improve. Mainly, Charlotte would like to spend 2006 learning to walk and talk. Looks like she may be on her way to talking early--the precocious little gal is already blowing raspberries which her Speech Therapist tells me is a 9 month skill (Charlotte is almost 8 months, or 7 months adjusted for gestation). You're all thinking it so I'll say it--she'll need to learn to speak early and often to get a word in edgewise in this house!

Another thing my yoga teachers encourage is to review our accomplishments at the end of the year. It's actually a much more positive way of thinking of the end of the year and the beginning of another than determining one's faults and thinking of a list of "fixes."

So, Charlotte has accomplished more than a lot of seven and a half month olds (and a lot less than others, to be sure):

• She came to be, a startling month early
• She endured and recovered from major heart surgery
• She flew threw angioplasty
• She learned to eat from a bottle
• She learned to prevent an NG tube from being inserted and she learned to pull it out
• She (as a result of the above) had a G-tube inserted
• She had 2 barium swallow studies (video x-ray of her swallow mechanism)
• Countless x-rays, echocardiograms and sonograms
• Video study of her vocal chords
• And regular kid stuff like eating solid foods, rolling over, blowing raspberries, giggling (non-stop) and vocalizing (like crazy)
• Reaching 26.5" long and (nearly) 15 lbs

In addition to Team Charlotte, her friends and family, Charlotte has met and been cared for by so many wonderful people beginning with:

• Dr. Brian Kaplan and his wonderful team, the RE who helped Charlotte become a reality
• Dr. Rudy Sabbagha, the OB-GYN sonography specialist who found the heart problem in utero last in January
• Dr. Bettina Cuneo, Pediatric Cardiologist who diagnosed Truncus Arteriosus
• Drs. Luciana Young and Nina Gotteiner, her cardiologists who have followed her since I was 24 weeks pregnant, and their assistant Janet
• Dr. Patricia Gale, my OB, who brought our little baby into the world and the wonderful nurse whose name I forget who was amazing when things went into emergency mode
• The CMH transport team who brought my baby to me so I could at least see her before they took her to another hospital
• The entire CV surgery team: Drs. C. Mavroudis, B. Backer and B. Stewart; APNs Julie, Elizabeth, Lori and Carrie
• So many nurses in PICU that I can't mention them all, but I'll name as many as I can think of right now: Nancy Smith, Sam McCoy, Michelle Miller, Amy DeTuro, Mary Anne, Denise, Sheri the Baby Whisperer, and so many more
• Also in PICU, sonographers, respiratory therapists, x-ray technicians, echocardiographers, nutritionists, physical therapists, and countless others at CMH who held our hands and prayed for her
• Dr. Sisson, the orthopedist who ordered the splint for her metatarsis abductus and declared it cured in July
• Dr. Stephen Pophal, the cardiological interventionist who did the angioplasty and Julie, the nurse who recovered her
• Dr. Billings, ENT, who made sure we have no nucal fold problems in the vocal chord area
• Dr. Sentongo, GI, and his nurse Annie, who are working with us to resolve any GI/reflux problems related to the G-tube
• Dr. Chon and the great radiology team who did the GI x-ray in November. Remember? Charlotte laughed even though she was strapped to a board
• Dr. Marletta Reynolds, the surgeon who inserted the G-tube, and Terry Coha, RN, who changes the dressing every week
• Jackie, our friendly face nurse in surgery and cardiology clinic
• Drs. Salem, Ramadan, Newport, Chang and McNeill, Nurse Anne and the rest of the staff of the extraordinary Lakeview Pediatric practice
• Dr. Vicari, the plastic surgeon who prescribed her remolding helmet
• Sara Karp, her PT, and Laura Robson, her Speech Therapist/Feeding specialist, who come to us weekly to help keep Charlotte solidly on the path to regular kid-dom
• Louise and Bill, our wonderful neighborhood pharmacists who have met all of our special pediatric needs (Ballin Pharmacy on Lincoln)
• The maintenance guy who cheerfully cleans up Charlotte's "cheese" in the hospital lobby
• The coffee shop guy at the hospital who always reminds me how hot the water is when I warm her bottle there
• And, I can't forget the anonymous mom of 5, 3 of whom had had surgery for a rare blood disorder, who dropped to her knees to pray for us when I was having a really hard day after an out-patient visit at the hospital

I'm sure I've forgotten someone. (I've not tried to list family and friends by name. Please don't be offended. You know who you are and, more importantly, so do we. ) As you can see, we've been quite busy.

As I listen to Charlotte's pump finishing her last feed of the year, I can hear the fireworks at Navy Pier ringing in 2006. Tomorrow I'll have the opportunity to celebrate with many of you in person. Tonight, I want to end the year by expressing our gratitude to all of you for your love and support. This has been the most difficult year of our lives and often it has been hard to see the joy through our tears. You've done your best to bring perspective and remind us of hope. While I have words for so many things, I cannot express my love to all of you enough, especially to my husband who has been my rock through all of this.

My resolution for 2006? 1) To be more patient and more joyful and 2) to finally master Handstand and Crow Pose in my yoga practice.

Namaste. Shalom. Peace.

A Little Gallery

Coordinating with Eeyore!
Charlotte was giggling like crazy in between photos, but I just couldn't get her to smile for the camera.

Making New Friends
On December 24th we went to Milwaukee to visit Tracy, Jared, Mhari and Ava. They gave Charlotte this adorable purple elephant. She loves it! (Mhari, age 5, and Ava, age almost 3, are avid blog readers.)



Happy Hanukah!
Wearing the same bib her cousins Julie and Jamie wore, Charlotte watches the first candle of her first Hanukah get lit. Then she helped us to unwrap gifts--she ate the paper :).

Hard at Work
My favorite days are Fridays. We start our morning with Sara, Charlotte's physical therapist. Charlotte works hard with Sara. Some days she loves it and giggle much of the time. Some days she screams and screams. My job is, as always, "distraction action," doing anything I can to stem the crying.

In the afternoon Laura, Charlotte's Feeding Therapist (a specialty within Speech therapy) comes to help us sort through the eating challenges. She came today because I'm at the end of my rope with Charlotte's recently acquired distaste for eating. She's been refusing the bottle vehemently for several days. She did get Charlotte to eat, despite the hissy fit "little miss tiny 'tude" pitched. Baby ate, then fell asleep on Laura's shoulder. (Laura is only pretending to sleep.)

We're so lucky to have such wonderful professionals helping us learn how to better take care of our kiddo.

Steady Growth

Yesterday's weight check: 13lbs. 13oz. That's 6 oz. in 12 days--exactly 0.5 ounces a day which is the doctors' goal. The crazy weight gain of 1 oz/day seems to have slowed down and was probably just "catch up"growth. To be sure, however, we'll go for another weight check next week. I'm really hoping that's the last weight check. She has to visit the pediatrician's office monthly for her Synagis shot so I pray that her monthly visit can also be her weight check.

We're still going around and around with the insurance about the helmet. It is covered, but requires "pre-determination," whatever that means. The doctor's insurance specialist is working with BCBS to get them the information they need. Seems to be complicated though it is clear that the helmet is covered. Keep your fingers crossed.

Little angel seems a bit off today, maybe because of her flu shot yesterday. She didn't nap all afternoon. She's now upstairs sleeping so I'm off to continue the housework.

All I Want for Hanukah....

All Charlotte wants for Hanukah is her two front teeth. And, look, she's got them!

Thanks to everyone for your outpouring of support. Your phone calls and emails and tough love mean a lot to me.

We've decided to go ahead with the cranial remolding band (the official insurance terminology). Charlotte is already gorgeous, this can only make her even prettier (like that's possible!)

And, since it is the season of miracles, it looks like our insurance will cover it 100%, as durable medical equipment. Go figure. We just need all the preauthorization to happen.

The STARscanner means that Charlotte does not have to be molded for the helmet. All of the measurements were taken yesterday by the scan photo. Once we have preauthorization, it should be about 10 days until we have the helmet. (I'm trying really hard not to call it the "hell-met" or "that wretched thing." Bear with me.) While Dr. Vicari's clinic is in Glenview, the craniofacial main clinic is at Children's downtown. This is good new for me--Charlotte will need to be refitted weekly or biweekly and this way I won't have to drive the highway to do it.

By the way, if you're wondering...yes, Charlotte's eyes are light-colored. Some days they look gray-green. Sometimes they look blue. We think she gets them from Philippe's mom.

The Last Straw

We finally admitted reality yesterday and consulted with a plastic surgeon about Charlotte's head shape. If our concern about head shape comes as a surprise, it is because we have not really talked about it. It is the one thing that truly, truly upsets me and freaks me out.

Anyway...with the Torticollis diagnosis (see 8/3 entry) came the strong possibility of positional Plagiocephaly. Technical definition: "a malformation of the head marked by an oblique slant to the main axis of the skull." (Plagiochephaly.org). In other words, rather than a rounded rectangle, the head looks like a rounded parallelogram.

My dearest hope was that our early involvement with physical therapy and our hard work on Charlotte's neck strength and movement would help her slightly flat head improve. So, I made the appointment for December in order to give as much time as possible for self-correction.

So, can you tell that I'm avoiding getting to the point here?

Yesterday Charlotte was assessed by Dr. Vicari, a physical therapist and an orthotics specialist. Her head was photographed using a STARscanner, a digital camera that creates a 3-D picture, eliminating the need for a CT scan. It took about 2 minutes (a CT scan would have taken +45 and necessitated sedation).

The doctor presented me with an image and a diagnosis and went over it carefully. I'll spare you the details, mostly because it upsets me too much to commit the details to type. The upshot: Charlotte has moderate positional Plagiocephaly or flat head. It is more prominent in the rear of her head. If you look at her head from above, you can notice that her ears are not evenly placed on her skull, one is set further back on her head. Here's a sample image of positional Plagiocephaly. This is not Charlotte's head; just an example.

(Charlotte's head does not look nearly this bad. I'll post some pictures in the next day or two. If we can scan her STAR summary, I'll post that too.)

This is a normally shaped head:


Why did this happen? Who knows. There are a number of possible contributing factors:
--Charlotte was definitely "squished" a bit in utero. The sonographers had a difficult time measuring her head circumference because she was “so low
--She was in the hospital for 7 weeks in a hospital bed with almost no tummy time (hard to be on your tummy when you have a major incision on your chest and a gazillion tubes sticking out).
--She spent time spent in her papasan chair at home because she was attached to oxdidn't and we didn't know what else to do with her.
--The universe has decided to send one more test of my sanity.

What do we do? Dr. Vicari recommends that we go with an orthotic helmet. She'd wear it until she outgrew it, about 4 months. Since her case is "moderate," he thinks we could also see improvement through physical therapy. He's inclined to go straight for the helmet because she has so much else going on. I'm inclined to wait because she has so much else going on. We agreed that I'd come back with her in January to see how she'd progress and go from there.

(PAUSE FOR TEMPER TANTRUM)
I HATE the idea of a helmet. Seriously hate it. Why? Okay, be honest with yourself--who among us hasn't had a split second of judgment and/or pity for parents whose kids have a helmet. Who hasn't had to work hard not to stare? And if one more person tells me the damn things are cute, I'll scream. If it's so goddamn cute, go get one for your kid.

(TEMPER TANTRUM OVER)

Temper tantrum aside: The truth is Dr. Vicari is right. Charlotte has so much going on that getting to do her therapy with her daily is a challenge. Many days she simply eats and sleeps, like a newborn. Other days, she eats, vomits, and sleeps. So, I get to add an emergency bath to the day. I'd love to be able to read to her every day, feed her solid food (or as I call it "wet food"--too many kitties!) every day, go for a daily walk, etc. But the normal, fun things just don't happen.

As much as it looks like we're on the road to "life as a regular kid," we're not even halfway there. Feeding her can take up to an hour and a half. We're in a phase of tons of appointments due to the recent g-tube insertion:
--we go to the hospital weekly to change the surgical dressing (that will end in late January);
--weekly weight checks;
--monthly RSV prophylactic injections;
--weekly PT and feeding therapy (they come to us, thank G-d)
--occasional specialist visits (today was supposed to be GI, but I rescheduled)

The upshot is: we will have to make a decision this weekend whether to order the helmet now or go back in January to re-assess. Philippe and I both tend to think that waiting until January is simply delaying the inevitable. But, this really is the last straw. I can't bear to be the mom that people stare at and pity. I really can't.

The added fun will be fighting with insurance about this. I just found a terrific website, a mom's blog of her daughter's treatment for positional "plagio", where the mom talks about fighting with BCBS Massachusetts to get this covered. And Massachusetts is one of the best states for insurance. We're insured out of NY--use your imagination.

Finally, this simply isn't done in Europe. Explaining the helmet to Philippe's family and friends will be difficult. I do so hope they won't be judgmental of the unknown. I hope they'll have it in their hearts to realize that, if we choose this, we're choosing what is best for our baby.

For more information check out Hannah's Noggin.

7 Months Old Today

Charlotte is 7 months old today. She had a great day, playing with her physical therapist, Sara, and visiting with her Feeding Therapist, Laura. Here's a picture of Charlotte hard at work with Sara. (I'm cheating--this picture is about 3 weeks old.)




Her official weight, as of yesterday, is 13 lbs.. 7 oz.! She has gained 8 ounces since her last weight check on November 30. That's basically an ounce a day. As she grows, we have to feed her more and more. So the challenge continues.

To put this all in perspective: when Charlotte first visited the pediatrician in late June, she weighed 8 lbs. 10 oz. Back then we were urging her to finish bottles of 60 ml (2 ounces) and it was cause for celebration when she did that. Her goal for each day was 350 ml. Today, her bottles are 180 ml (5.5 ounces)and our daily total is meant to be 785 ml. As I said to her Feeding/Speech Therapist today, it seems like every time Charlotte is about to get cross the finish line, the line is moved. I'm hoping that her caloric requirements will plateau soon.

And, baby Charlotte loves her peas. She finished all her peas and cereal this afternoon and then, 30 minutes later, finished a whole bottle. No wonder she went to bed without a peep at 7:15!

New pictures soon, I promise. In the meantime, here's our little family, taken over Thanksgiving weekend. We're so glamorous!

Grow, Charlotte Grow

Our little bruiser weighed in at a whopping 12 lbs. 15 oz. today. If you're not memorizing her weekly weights like we are, that's 9 oz. more than last Wednesday. Our doctors hope for 0.5 oz. gain per day. This is more than 1 oz.!! Since her lungs sound clear, we think it's all good news. We'll have a weight check next Thursday to confirm the trend and its safety. Then we will taper off a bit.

We had the Hollister dressing changed on her tube yesterday. It's pretty simple to do and, in theory, I should do the next changes at home. In practice, I really can't look at the tube coming out of her belly and the dressing freaks me out a bit. So, I'll probably wimp out and go every week to the surgical nurse.

If anyone is interested in what the G-tube looks like, I'm happy to send a photo. It's really not gross or graphic, but since I have a hard time with it, I'm not sure it's appropriate for public consumption. On the other hand, maybe it disturbs me because it's my little baby's belly and I'm close. Perhaps a photo isn't so bad. Let me know--if enough of you want to see it, I'll post it.

And, as much as I hate the thing, Charlotte is growing. Yippee!

Gallery of Celebrity Guest Feeders

Charlotte has been home from the hospital for 5 months. Wow! It continues to amaze me how time flies with this little cutie. In honor of 5 months at home, 5 months of meeting friends and family, here is a gallery of Charlotte's "Celebrity Guest Feeders."*









For the record, she's counting the days until we can take her to Belgium so that her Mami and Papi, Tante Mich and the rest of the Geyskens and Hondequin clan can get their hands on her. Soon.....


*Guest Feeders in order of appearance on the web page: Debra, Kath, Bamma, Helen, Julie, Jamie, Terry
I seem to be missing some Celebrity Guest Feeders--if you have pictures, please send them to me!

G-Tube, Hospital Stay Day #2

As Long As I Have Mr. Mouse and Something To Chew On, I'm OK!!

What a difference a day and a little bit of food make! I relieved Philippe around 8ish. I had a long day in room 523, but Charlotte was happy and smiling for most of the day.

By mid-morning Charlotte was getting about 10ml of Pedialyte an hour, continuous feed. Shortly after that, we switched her to baby formula, all through the tube still, and incrementally increased the continual feed volume. Once she proved that she could tolerate 30 ml/hour, we stopped the feed for an hour. At 4 pm, finally, I was allowed to feed her by mouth. We gave her 2 ounces by tube and 3 ounces by mouth. She sucked the bottle down and gave a big old burp. Then, at last, my little Charlotte drifted into a deep sleep for her first nap of the day.

Release criteria were simply that she tolerate a full feed--for Charlotte that is about 5 ounces. So, by 5:30 pm we were talking about release. By 7:30 pm we had our baby home. Phew! She ate, got fed by tube (what a mess!) and slept through the night.

Mr. Mouse Watches Over Charlotte
What was the day really like? Well, Charlotte barely slept. She was utterly exhausted, but still hungry. I think the hunger, the distractions of the hospital, and having me in the room with her prevented her from sleeping. She took a series of small (20 minutes or so) cat naps. She sat in my lap and listened peacefully to the same Dr. Seuss books over and over. She lay on her side in the crib and stared at the Fisher Price aquarium. She chewed on her pacifier. She kicked her blanket off. Her lasix dose prompted "the great flood of 2005," and we had to remake the bed and give Charlotte a sponge bath.

I learned about the tube and met the nurse who will help us with the dressing next week and who will put the button in in January.


Oh, Yeah, I'm Getting a Tooth. I'll Even Chew on the Oxygen Mask
Charlotte had a lot of visitors--her hospital Speech therapist, Susie, saw her name on the board and stopped by. Maureen, the caseworker who coordinated her discharge in June, came by and helped with some insurance issues. Dr. Stewart, the CV surgeon, and Elizabeth, the CV APN, stopped by to "check for cuteness," according to the doctor. Another CV surgery nurse, Julie C., stopped in when Philippe was there. The nurse who took care of Charlotte after her angioplasty, Julie B., stopped me in the hall to chat. Several volunteers stopped in--most bearing toys and gifts! Our little girl was quite the star. Charlotte is lucky to have such a medical team. Each and every one of these visitors confirmed that while this isn't the most fun thing we've had to do, the G-tube is the best thing for our little angel right now.

Gastrostomy Tube Surgery

Easily the longest day of my life. Seriously. I thought the day of her heart surgery seemed long. But it was so different. The heart surgery took about 4 hours, I think, so we waited a long time. Because it could have been touch and go, I recall being terrifically relieved to see Dr. Mavroudis walking toward us with a smile on his face. Setting Charlotte up in her PICU recover took hours. And when we saw her after heart surgery she was paralyzed and sedated. We never saw any discomfort--by the time the paralytic drugs were stopped, she'd passed the discomfort phase.

Monday was totally different. The G-tube insertion took about an hour, including anesthesia. We had barely finished our coffee when Dr. Reynolds popped her head into the waiting room to tell us that the procedure had gone well.

A few minutes later we went to Charlotte's bedside in the Recovery Room. Because they had used a short, non-narcotic dose of anesthesia, Charlotte experienced a little of something called "emerging delirium". Fortunately, her anesthesiologist, the dapper Dr. Tobin, forewarned us. Basically, she screamed and was inconsolable off and on for about 30 minutes. She was awake, but not aware of her surroundings, so she didn't realize that we were there to comfort her. I had a tough time with it. Philippe took over and did a great job with her.

When this was over, we moved to the 5th floor for observation. Philippe and I had a quick lunch and then I stayed with the baby. She cried on and off all day and had a hard time sleeping. While there was some discomfort, little Charlotte was mostly ticked off because she had not eaten since midnight Sunday night. It was so difficult to watch her. No food by mouth and nothing allowed in her stomach for 12 hours post-surgery. I was not terribly effective in comforting her. Thank G-d for Nurse Annette who did a great job with her.


The "tube-tail" that sticks out is longer than I thought it would be. It's essentially like a Foley catheter, yellow-ish rubber, with a capped extension tube at the end. The dressing on the wound is a larger round bandage with a hard plastic clip that sticks out about ½ inch from her skin. For several hours after the surgery, the wound leaked and dripped. Busy little Charlotte tried to play with the tube so Annette got her a little hospital gown to cover it up.

In theory, Dr. Reynolds' nurse will change the dressing next week and then I'll change it weekly until the button is placed. In practice, I'm guessing I'll take her to surgery clinic every week to have the dressing changed.

Philippe and I had dinner and then he relieved me. Sometime during the night Charlotte started getting Pedialyte via her new tube and she was able to sleep for several hours. Philippe even got 4 or 5 hours sleep. Our pal Sam came by on her way into shift in the PICU to visit and then picked Philippe up at 6 am for a Starbucks run. Apparently when she popped in at midnight, Philippe and baby were fast asleep. I was quite relieved to hear that.

The weirdest thing was coming home to an empty house. I've slept alone in the house before, but not since the baby came home in June. I had myself a good, cleansing, stress-relieving cry and then long chats with Colleen and my sister. Even with half an Ambien it took me forever to fall asleep.

The family of Charlotte's first roommate was terribly angry and stressed out. They were yelling at everyone. I was glad when the patient was released because the negative vibes were definitely not good for us or Charlotte. The "Angry Family", as I dubbed them, just wanted someone to blame and insisted on going home, as if hospital were jail. They were clearly unwilling to consider lifestyle changes for their overweight, sedentary teen in order to help with her heart condition. It was hard not to give them a piece of my mind, actually. The experience showed me why most of Charlotte's medical team have been so very gracious to us--we are so thankful for the expertise and grateful for their compassion.

GI X-Ray

Charlotte thinks this is all sooooo funny

Before Charlotte's G-tube was inserted, she needed to have an x-ray to "rule out malrotation of the abdomen." In other words, Dr. Reynolds wanted to make sure that Charlotte's GI tract was normal. She had to fast for 4 hours prior to the procedure. Then she drank a bottle that was mostly barium--a substance than can be seen by x-ray.

Being suspended on my side is not so much fun

For the x-ray, she was strapped to narrow board (like the VQ scan of her lungs last month). I fed her the barium bottle which she just about guzzled down while the Radiology resident looked for the views he needed. She was strapped down for about 30+ minutes while we waited for the barium mixture to move from her tummy into her dudenum, the upper part of her small intestine. The radiology technicians kept rotating the board, mostly on her right side, to help the mixture move.



As you probably realize, everything was perfectly normal. Dr. Chon took one more picture, this time after we fed Charlotte as much as she could possibly eat lying on her back. The last picture was of the top of her abdomen to confirm that she has no reflux.

The Radiology Team

G-Tube Surgery Scheduled

Quick update: Charlotte's G-tube insertion surgery will be on Monday 11/21. Tomorrow we go for a GI x-ray and blood work. She seems to have a little cold, but I'm hoping it will clear up so that a) she'll eat for the next few days and b) we can go ahead with the procedure. I've started coughing, too, so we may not have a lot of luck.

Sorry I haven't done the then/now photos yet--we've been a bit crazy around here.
For now, here are some "now" pictures.


We call this one "Daddy is sooooooooo silly."


Sweetie pie loves sweet potatoes.


"Don't I look just like my Daddy? I like to soak in the bath just like he does, too."


It's a bird, it's a plane, it's super baby!!

Surgeon Meeting Update

We met today with Dr. Marleta Reynolds, the pediatric general surgeon, to whom we were referred for the G-tube placement. She was lovely. And like so many of the doctors at Children's Memorial, she wears Eyephoric 2.5 glasses (like Philippe); hers are bifocals in lavender. Purple is my favorite color, so I'm sure it's a good sign. Another good sign, Charlotte flirted with the doctor the whole time we talked.

Provided Dr. Young, Charlotte's cardiologist, approves, we're in agreement with the pediatrician, GI doc and surgeon this is a necessary procedure and the best course of action for Charlotte. Why? Because not getting enough nutrition not only impacts growth, it also can lead to multiple infections, weak bones and irreversible developmental deficits. We're not there yet; Charlotte certainly is not malnourished. But, there is no reason to get there.

Here's what we can expect: Charlotte will need an Upper GI x-ray to determine that her abdominal anatomy is normal. We hope to do that this week. If all goes well, we'll schedule the procedure as soon as possible.

The day of the surgery Charlotte will be put under general anesthesia, given antibiotics throughout the procedure and a small incision will be made in the upper left quadrant of her abdomen. The tube apparatus will be inserted. She'll leave the procedure with something called a "pezar" (sp??), kind of like a little tube-tail. That will remain for 2 months at which point it will be replaced by a flip-top kind of button thing (no, that's not the medical terminology. Just the "mom-inology."). As with the NG tube, we'll be able to supplement her feeds either with the electric pump or by hand with the syringe.

She'll be in the hospital for 24 hours. Then a 1 week follow up to check the wound. Then a 7 week follow up to replace the tube-tail (again, my term) with the button.

There are always possibilities of complications with surgery. Dr. Reynolds assured me that this is a common procedure and that Charlotte is a good candidate--both healthwise and because she'll likely need the G-tube for more than 6 months. She may experience increased reflux (she only has a tiny bit now). She could develop granulation tissue which is easily treated with an ointment. Generally, she should do just great.

Of course, today she has finished every bottle I've given her :). Murphy's law.
However, I wouldn't be surprised if she didn't do that tomorrow because she'll be so tired from today. The G-tube will see us through the winter when she could easily lose appetite due to a cold or something.

Charlotte tried sweet potatoes today. She loved them! I'll try to get a picture tomorrow to share. It was too funny.

Feeding Update

Charlotte had her 6 month check up and shots on Monday. Official weight: 12 lbs. 7 oz, up 3 oz. from last Tuesday. That's good. Not great, but good.

Unfortunately, we're going to have to find an alternative to the NG tube in order to get enough nutrition into her system. Why? (Skip two paragraphs for the short version.) Last Saturday night we had a huge thunderstorm. After a particularly loud clap of thunder, I went to look for Miles to make sure that our big scaredy-cat was okay. When I popped my head into Charlotte's room, she looked up at me from the crib, eyes wide open with an expression of terror. She had not been crying, so I didn't know she was awake. I thought perhaps the thunder had awoken her and picked her up to soothe her. That's when I realized that she was really struggling to breath--she had a little cold and the NG tube always makes her congested. Between the two, the poor little thing simply could not get air into her nostrils. We suctioned out what we could (okay, Philippe did. I held her.) But, we realized that the only way to clear the right nostril was to pull the tube out. We did that.

We chose not to put the tube back in because on Friday it had taken 6 attempts to reinsert it. 2 by Philippe, 2 by the nurse at the pediatricians office. Then she pulled it out and the nurse had to try 2 more times to put it in. Seriously, we just couldn't do that to her again.

After some serious conversations with the pediatricians, we've decided to explore inserting a G-tube. We have an appointment with a general surgeon, Dr. Marletta Reynolds, for a consult on Tuesday. We're hoping to get the surgery scheduled as quickly as possible.

She's starting to eat about 4 ounces at time consistently; but she needs to do that 8xday to get as much food as she needs. There just aren't enough hours in the day. And after 4 or 5 great feeds she vehemently refuses the bottle.

But, she loves bananas!

Charlotte is 6 Months Old Today

Charlotte is 6 months old today. How time flies, even when it seems to drag on and on.

Her circumstances have made the last 6 months more trying than I ever imagined motherhood would be. I feel that I’ve let her down in so many ways; that I’ve not been the partner Philippe deserves; and that I’ve offended many of you when I’ve asked you to step back for a day or two.

On the other hand, Charlotte has developed into the easiest (personality-wise), happiest kid I know. She giggles constantly, loves to dance (especially to Sinatra and meringue, go figure), and makes goofy, cartoon-like faces. She can even raise one eyebrow—I suppose she needs that skill to react properly to her wacky parents.

I hope we get past this medical crap soon so that we can enjoy being a family.

Check this entry over the next few days—as I get time, I hope to post some then/now photos of our little silly girl.

Cardiology Update

Charlotte had her monthly visit with Dr. Young yesterday. It was also the one month follow up to September's angioplasty. After a very long wait, Charlotte had a 40 minute echocardiogram and then a consult with Dr. Young.

Bottom line: everything looked good. The TR velocity--the pressure measurement which led to the angioplasty--was lower than when measured by in August. No adjustments to medications at this time.

Next check up is in 3 months.

That's all the news for now.

Charlotte Helped Me Write This

It’s astounding—feeding Charlotte the appropriate amount of calories for her weight (as recalculated on Friday) has made an enormous difference already. Charlotte weighed in today at a whopping 12 lbs. 4 oz. That’s 7 oz. up from Friday. Shocking. She’s now averaging .75 ounces a day over 2 weeks. Just one growth spurt changes the trendline enormously. If we’re lucky, Philippe will generate 2 graphs to show us how new data changes the picture.

We’re still using the tube (although it came out this morning and since she’s eating like a champ, we’re going to wait a few more hours to re-insert it). The GI doctor suggested (by phone) that we add something called Duocal to her formula to fortify it even more. This will help us get more calories in with less volume and hopefully less effort from Charlotte. We’re hoping that we’ll be able to do another trial removal sooner rather than later. Charlotte has her 6 month shots on Tuesday, so more news on the tube front then.

Big food news: Charlotte has been having some rice cereal several times a day for a while now. She opens her mouth for it like a little bird. Today we started with bananas. Despite the face she’s making in this picture, she actually liked bananas a lot.



As I write, she’s practicing rolling onto her tummy. The road to “regular kid” has some bumps in it, for sure, but we are so blessed to have such a happy, easy child.

Happy Halloween!

Our little sprout. Costume courtesy our great pal Kath in San Francisco.



p.s.
please ignore the person holding Sprout.

Here's Charlotte participating in her first Halloween Parade:



The excitement was too much for her, so she took nap on Daddy's shoulder. Believe it or not, she was not the only sleeping peapod. Seriously. Marching with her were her pals Minnie Mouse (aka Gabriella), Mr. Zebra (aka Finn) and The Bee Brothers (Dillon & Nathan, who we unfortunately lost in the crowd.) There was trick-or-treating at the stores on Roscoe Street, but (much to Daddy's chagrin) it was too crowded to even get near the candy. So, we went to Starbucks (shocked, arent' you?) and went home where we were met by: A court jester (Marcus) and his twin fairy (Karolien), Spiderman (Max) and Princess Kiki; and a gorgeous 5 year old kitty (Riley). Seven Halloween kids, their parents and visiting Aunt Carol and Uncle Mark. It was quite fun at our house. Too fun to take pictures, sadly.

Tube is Back In

Weight check: 11 lbs. 13 oz.
If you're not memorizing her weights, that's only 3 oz. up since she was weighed on 10/14. Perhaps worse, it is exactly the same as Tuesday's weight check (which I forgot to post).




What it means: Charlotte has been averaging only 0.25 ounce gain per day. Babies her age should be gaining 0.5 ounce/day.


What it really means: The tube goes back in. We now go back to being obsessed about the exact amount of nutrition Charlotte is taking in every day. We return to feeding sessions that can take as long as 1.5 hours, biting into to crucial developmental play time. We return to being consumed by her consumption, as it were. It's a pretty terrible way to live. Worse, her beautiful cheeks will now be ravaged by the tape again.

I am, perhaps needless to say, devastated.

If you're asking yourself "what can I do to help?", I thank you for the sentiment.

What you can do is please don't call or email to discuss, comment, or lament this right now. I just can't. And, please refrain from any advice on enticing Charlotte with particular solid foods or waiting until she's super hungry. And this is the part Philippe says I shouldn't say, that I won't be able to say it politely--if you think you're the exception to the "please no phone calls or emails about this," there are no exceptions. I really just can't. Please understand. I'm sorry if this seems rude or ungrateful I don't mean it that way.

You see, it's just not about hunger. It's not about whether she'll eat. She's generally a good eater. It seems to be about the amount of energy it takes her to eat. On Tuesday and Wednesday this week she ate more than she had ever eaten in one day. It made no sense that she hadn't gained--so it has to be about energy in-energy out. Her cardiology consult is November 2. So, we wait and see.

We're increasing her calories pre day and we'll go to the pediatrician for a weight check on 11/1. Then we have our monthly cardiology follow up on 11/2, the first since the catheter procedure. We should know more by the end of the week.

Enjoy the latest pictures--the last tubeless ones for a while.

Could We Be On Our Way?

In the introduction to this blog I noted that this would be the story of Charlotte's journey to regular kids' life. Well, we may be on our way there...finally.

On Friday we checked Charlotte's weight at the pediatrician. It held steady at 11 lbs. 10oz. No weight gain or loss since Tuesday. We were shocked because on Wednesday and Thursday little Miss Charlotte had eaten less than 75% of what she should have. Anyway, Dr. Salem, against all odds, told us to leave the tube out. She said that if on any subsequent day Charlotte didn't get to her goal food volume, we should put it back in. Promising to do so, I left. Quickly, before she could change her mind.



Well, let's just say that Charlotte seems to have taken Dr. Salem's admonishment to "Eat, Charlotte" quite seriously. She's been tossing back bottles like a little champion since Sunday. We've been inching her twice a day meds towards 7 a.m. so that we can give second doses at 7 p.m. to get her on the sleep schedule that she seems to naturally lean toward. (She's been out like a light since 8:20 p.m. this evening.)



We're not optimistic enough to call OptionCare to pick up the pump. Not quite yet. But, our kiddo is making us proud. It's finally fun to feed her. Most of the time. And, best of all, her little cheeks are nearly completely healed--she has a lovely baby complextion. At last.

Up 2 Ounces :)

Today's update: 11 lbs. 10 oz. For those of you who haven't been memorizing the statistics, Charlotte has gained 2 ounces since Saturday. I jumped for joy. After telling me to come back on Friday for another weight check, Dr. Newport gave me a high five.

Here's a little photo gallery of Charlotte, tubeless and with cheeks on the mend. (Some of the photos are a bit out of focus; we're still getting a hang of close ups with the digital camera.) Daddy has been taking a lot of pictures, but not posing. I'll try to fix that next time.