Saturday, December 31, 2005

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.

Thursday, December 29, 2005

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.

Wednesday, December 21, 2005

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.

Thursday, December 15, 2005

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.

Wednesday, December 14, 2005

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." ( 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.

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 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.

Friday, December 09, 2005

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!