Wednesday, November 30, 2005

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!

Monday, November 28, 2005

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!

Tuesday, November 22, 2005

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.

Monday, November 21, 2005

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.

Friday, November 18, 2005

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

Thursday, November 17, 2005

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!!

Tuesday, November 15, 2005

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.

Thursday, November 10, 2005

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!

Wednesday, November 09, 2005

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.

Thursday, November 03, 2005

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.

Tuesday, November 01, 2005

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.