Our Little Traveler

Charlotte took her first plane ride on Friday! She traveled on Continental (with us, of course) from Chicago-Midway to Newark. I was pretty stressed about traveling with her. My stomach hurt most of the morning and I was sure we'd forget something important.

Ultimately, as always, Charlotte was a dreamboat. We had to move her into the car about 10 minutes after she fell asleep for her nap. She never fell back to sleep and so missed her morning nap. At the airport she smiled and giggled and played. And ate several ounces of food.

We decided to feed only what she would take by mouth and not pump, hoping not to exacerbate any reflux.

Philippe wrangled the car seat into the window seat and I settled in next to Charlotte. I had to entertain her for a while, but she ate a little more, sucked her thumb and finally fell asleep. So did I.

My brother met us at the airport and we headed to his house. Charlotte spent the rest of the day playing with her cousins and being doted over (life's rough, kid). She refused to eat any dinner so we pumped a whole feed.

At bedtime, Charlotte thought the pack-and-play was her playpen (b/c we use it as such at home. big mistake). She wouldn't sleep. She screamed and cried for about 45 minutes. We stopped checking after a while because we figured that she just didn't want to sleep. Nope. We finally went back up to find that the poor thing had vomited and it was all over her face, stinging her eyes and making her skin all red. So, emergency bath, long cuddling by Daddy and FINALLY she went to sleep.

Saturday morning she napped like normal, about 2 hours. But, she still refused to eat and had a major reflux-vomit episode after lunch. I managed to recognize the cry, grab her from Brandi and get her to the kitchen sink just in time. Philippe, Hal and Taylor were with her in the afternoon (Sue, Brandi and I went to the mall. Yippee!! Tax-free clothing shopping.) They said she never napped at all.

Saturday night she also got to play with my sister and our niece Jamie. She really charmed the whole family and seemed to thrill at being with all of the big girls.

And...by Sunday morning little Charlotte was crawling. Really crawling. A little bit at a time and then "splat" because she's not doing great weight-bearing on her right side. But, she's crawling!!

Our flight home wasn't as smooth--Charlotte took a good morning nap but never got her afternoon nap. She also never got crabby. Go figure. But, she had a major episode of reflux as we took off. Philippe sat with her and spent an hour softly rubbing her chest and calming her. Miraculously, she never vomited. When we switched places, she played and giggle with me the rest of the ride home. I got the easy shift.

So...we were worried about her getting back on her schedule, but we should never underestimate our cutie. She was back on track immediately yesterday, including eating about as she did last week. She's currently on strike form solid food, but taking a few ounces at time from the bottle.

(With cousins Brandi, Jamie and Taylor)

Many, many thanks to Hal and Sue for their hospitality, to Laurie for driving alone on a highway (first time ever) to see us and to our lovely nieces Jamie, Taylor and Brandi for playing with our kiddo. And, to Mom for lending us her car and being not so bent out of shape that we visited while she was in China.

Random Thoughts & Cognitive Development

I've been lax about blogging recently. Mostly because I've been sleeping badly and many days I take a nap when Charlotte naps so that I can have the energy I need for her. Other days, I try to keep the house in order, do errands and keep Philippe and myself reasonably well-fed. Also, I've signed up to write reviews of children's books for Childrenslit.com and have been cramming that work in over the past few weeks.

The Charlotte update is easy--she's really cute, the easiest baby I've ever met and stubborn as a goat when she doesn't want to eat. We've realized in the past few weeks that she has different manners in which she refuses her food. From that, we've been able to identify when she's refusing because of reflux. I've been able, I think, to use that to read her hunger cues better so we typically get one good bottle out of her each day and some strong eating of solid food. We also get a vomit or two, sometimes a healthy projectile. We've been given the okay by our GI RN to try Maalox or Mylanta when we think she's in pain; that might avoid the major reflux episodes.

Developmentally, Charlotte hit some fun milestones in the past week:
--She started really babbling. Da da da da and ppfffffffffffftttt (raspberries). She obviously thinks she's making sense because is you repeat it back to her, she is delighted. I'm working on getting this recorded for an audioblog. Stay tuned.
--She's started playing peek-a-boo (cache-cache), holding up a diaper to hide herself and revealing her face when I say "Where's Charlotte?" Then she giggles like crazy. I've tried to capture this.
--The picture doesn't quite show the game, but you can certainly see her glee.
She's working hard on crawling. We've each seen her take a "step" or two, but she doesn't quite get the hang of it.
--And she's sitting for minutes on end, playing quietly by herself.

Feeding Update--Technology

Have I mentioned the wonderful web community that I recently joined? It's called Parent-2-Parent & Reflux in Children. All of the parents who are members have children with reflux--many are tube-fed (NG and G as well as G-J). Some have reflux as their main medical issue. Others, many others, are quite medically complex, so much so that they make Charlotte look like a super-easy case. Some kids were born with their problems. Others have gotten where they are as a result of illness, injury or abuse. It gives me a lot of perspective.

More importantly, the parents I have met there have given Philippe and me a lot of support, insight and ideas for managing Charlotte's reflux and feeding issues (I refuse to say "disorder" until a doctor does!). It is terrific to have a place to go where there is a "roomful" of parents who get what we're going through because they have been there or still are there.

My friend Darshani has pointed out that when feeding Charlotte is stressful or inconvenient, "just use the pump, that's why you have it." Philippe reminds me of this, quoting her, frequently. It's actually why we were at Temple Jeremiah yesterday, visiting with friends and trying to feed her there. It's also why I've tried to lighten up and have fed her late, and put her to bed a bit late for the past 3 nights.

Darshani also gave us a lot of tips about the pump. The best 2 tips:

1) she posted to her website (just for us!) a whole page of feeding tips and tricks. With her guidance, we have learned how to set up the pump for the last feed so that it turns itself off and we can go to bed now.

2) Darshani, echoed by many others, read our blog one day and asked why we were still using the Kangaroo Pet pump. She guided me to the Zevex Infinity with a super mini backpack. We were able to get it approved by our insurance super-easily; all I needed was a prescription from the GI doc. He and his nurse, Annie, basically said, "You don't have the Zevex already?" and signed the script. This thing is small, light, and easy to operate. It has a tiny backpack that Charlotte will be able to wear when she starts toddling. And, if I splurge on a bigger diaper bag, I'll be able to put the pump and its back pack in the bag. No more feeling like a pack mule. No more stroller tipping because of too much weight. The pump operates in any position, so I can literally throw it in the crib, the stroller, the car and not worry that it's upright. I never thought I'd get excited about my child's medical equipment. But, I love this so much that I have to share a picture with you!

On the left: The Kangaroo Pet. On the right, the Zevex Infinity. And, we now have a backpack that is half the size of the one pictured.

So, why isn't this just the first thing they give you? Dunno.

Feeding Update--Cleaning up in public

Some members of Team Charlotte have been inquiring as to whether Charlotte is sitting yet. Yes!! She prop-sits. She does not yet get herself into a sitting position, but she will stay in a sitting position for up to ten minutes if she's engaged with a toy. Mostly, she likes her musical toys (she is Philippe's daughter, after all). This one plays classical music--Peter & the Wolf, one of my favorites when I was little.

Charlotte's eating continues to be inconsistent. For ten days after she ate the entire bottle, she continued to eat 4 to 5 ounces at a sitting. If she drank a lot, she ate a smaller amount of solid food. If she drank a little, she ate a lot of solid food. One day she ate 1/4 cup of applesauce plus some chicken with sweet potato. Her reflux seemed vastly improved and I was able to do laundry just once a week for about 3 weeks.

It really looked like we were trending back to where we were in November, or better. Philippe and I even dared to say things like, "If she's taking 100% of calories by mouth by the time of our Milwaukee appointment, we should still go."

Yeah right. Maybe we jinxed ourselves. We're back to at least one daily major vomit.

Yesterday's, to my horror and embarrassment, was in our synagogue lobby while I was chatting with one of our lovely rabbis. We had to clean up what seemed like the g'zillionith vomit of the weekend, including a midnight affair on Sunday morning. Philippe and I just went into "reflux mode"--I got the baby to a trash can so that she didn't get the beautiful stone floor dirty. Philippe cleared my path (stroller, pump, etc.) and then got damp paper towels to clean up our trail. I got Charlotte changed while Philippe got her wet stuff into a bag, etc. Basically, we divide and conquer.

Rabbi Greenberg commented on what a good team we make, how impressed she was to watch how we just went into a kind of management mode and got it done, we just each know what the other needs to handle, or we shout instructions or "call" duties. It had been kind of a rough weekend and I think neither of us had been feeling our "teamness" particularly strongly. So, Rabbi Greenberg's words were incredibly timely--she reminded us of why this works, why we're so thrilled to be celebrating our 5th (Jewish) wedding anniversary on Friday. We are a team. Having a medically complex kid is challenging and it puts a different kind of stress on a marriage. Lots of marriages don't make it. But, most of the time, we feel like we're as stronger couple as a result of Charlotte's situation.

Thanks, Rabbi G. for pointing this out to us. Sometimes we need to be reminded.

Nights and Naps

Charlotte has graduated to "nights and naps"!! No more dirty looks from the mean daddy in the neighborhood playground! No more sympathetic smiles from well-meaning grandmothers or mouth-gaping stares from toddlers. Hmm... no more silly helmet pictures?!?!

(I'm not sure that Charlotte like the comparison to a bowling ball.)

Dr. Vicari was thrilled with Charlotte's progress. In the two months since she started wearing the helmet, many of the asymmetry measures have moved to "within normal limits." There are definitely still some improvements necessary--her ear offset is still visible to naked eye and some other numbers could stand to improve. Helmet-time is at our discretion, however, until she outgrows it. We can keep her in it 23 hours a day or move to nights and naps.

We'll continue to go to our orthotist, Pat, every 2 weeks for fittings. When Pat tells us that Charlotte has outgrown the helmet, we'll return to Dr. Vicari for another STARscan and, hopefully, discharge.

I certainly wish everything were this easy to fix.

p.s. At Dr. Vicari's office I hooked up her tummy tube to feed her. She was halfway through the feed when I realized that the tube had popped out of her tummy. She was totally soaked. And not fed. What a disaster.

Weight Check

Charlotte weighed in at 16 lbs. 12 oz. today. If you're not keeping your own spreadsheet on Charlotte's weight, that's up 15 ounces from 2/14. Nearly a whole pound! Or 0.5 ounce growth per day. We didn't see a doctor today, but I'm pretty sure that they will be happy with her growth.

As I write this, Charlotte is rolling around on the floor, grabbing her socks and yelling "eeeeeeeeeeeeeeeeeeee." I'll try to get her new noises on the Audioblogger this week.

We're off to see Dr. Vicari for a "noggin check," so expect another update today.

The Weather Report

Well, it's been a week and Charlotte just keeps eating. Most of last week she averaged between 135-120 ml (out of 180 ml) at least twice a day. One day she ate only 80 ml of formula for dinner, but finished 2 ounces of bottle baby food and 1/4 cup of Mommy's applesauce. She's constantly reaching for my food! She hardly had any reflux (beyond burping) all week. Nothing short of amazing!

Over the weekend we backtracked a little for two reasons. First, we think tooth #5 is working its way in. Charlotte is getting congested again and it's not a cold, so it's most likely teething. She continually has her forefinger in her mouth, probing one spot. The congestion, as we know, can exacerbate the reflux. So, yesterday she ate about 30-50 ml per bottle. She had a major in-bed reflux incident (right as Meryl Streep and Lily Tomplin were giving Altman his lifetime award. Drats!). This morning she ate 50 ml and had a major reflux incident. (I managed to get her to the sink--go mom!!)

And then, and then...at noon I sat in a chair with Charlotte on my lap. Not her favorite feeding position due to the reflux, but she was practically eating her thumb, so I thought I'd try it. Charlotte ate 175 ml (yes, you read that right) in 20 minutes. She fell asleep eating which is not the best thing--means she's working too hard. But, she ate the whole bottle! I cried and called Philippe and cried some more.

She's upstairs now, napping. I'm hoping she just stays asleep for her afternoon nap because her morning nap wasn't so hot.

She ate a whole bottle--the first one since before December 20th.

Just Wait 5 Minutes

Over the nearly 17 years that I've lived in the Chicago area many of my friends and family have asked me how I could possibly deal with the legendary, frigid Chicago winters. I've always answered that winters here are not that much worse than where I grew up (New Jersey), went to school (Rhode Island) and worked (New York). The wind tunnels on an NYC avenue can be as brutal as the wind off our lovely lake, but without the spectacular view of frozen foam. The cold in Providence on a rainy fall day can cut to the bone. And New Jersey, well, I don't remember it being too cold, but I remember lots and lots of snow.

Really how we get through winters in Chicago is that we wait for days like tomorrow--after the coldest weekend of the winter (February 17-22, right when my mom, the ultimate 'fraid of frigid person was visiting) and then a week of 30 degree windy cold, tomorrow we get 47 degrees. By Thursday it will be back in the thirties, but we'll have had that one warming day.

As any Chicagoan will tell you, these balmy days in the middle of our winter remind us that winter doesn't last forever and that spring will come.

What does this have to do with Charlotte? Everything, actually. Yesterday, Charlotte had a very bad eating day. She refused the bottle for all but 2 ounces at lunch, ate no solid food, and had medium to horrible reflux episodes after each meal. At midnight, about 30 minutes after her last feed, she screamed and vomited. No sooner had we gotten her cleaned up than she screeched, a sound that let us know she was in terrible pain, and vomited again.

Today was our balmy day, at least 2/3 of it: at breakfast and at lunch Charlotte willingly, even lustily, ate more than 4 ounces. I pumped only about 2 ounces at each meal. She playfully ate a lot of her solid food, too. As Laura, her feeding therapist (who fed her breakfast today) noted, days like today remind us that Charlotte can and will eat. She even enjoys it. Once we're able to better control her reflux, winter will end.

And dinner, you ask? Well, she stubbornly refused her bottle, eating about 1 ounce. She ate a few bites of her lentils and rice. She played and laughed. And when I took her out of her chair to take her to bed, she screamed in pain and vomited so much that I thought she was going to start retching. Sorry to be so graphic, but it is a rather horrific, adrenaline-ized situation, especially because the little princess doesn't cry that much.

A few other updates of note:
--We have our date with Children's Hospital of Wisconsin. We'll be heading up there on April 13. I think I can hang in for 6 weeks. As long as she doesn't vomit on the flights to and from NJ.
--Laura swears that Charlotte made and "L" sound today. She is positive Charlotte was trying to say her name. I wouldn't be surprised.
--Charlotte started to get the hang of the sippee cup some more with Laura, but she still won't do it for me.

Look Out Kitty Cats....

Sara is teaching Charlotte how to crawl up stairs. (She's not even crawling yet, but we're working on stairs.)


p.s. No, we haven't changed Charlotte's name. She just lost her "C."

One of Charlotte's Favorite Times of Day

Once a day, we remove Charlotte's helmet for an hour so that we can wash her head and scrub the helmet. Some days instead of a bath, Charlotte and I play "beauty parlor." I think she likes it. I definitely do!







p.s. I've cheated a bit here--Mom and Philippe took these pictures over the weekend.