Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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.

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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.


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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.


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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.


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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.


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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.