Charlotte's Journey Home

Just a Regular Kid, Sort Of

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Today’s Tally

I hear so often how Team Charlotte admires our courage, grace and gratitude. And I thank you all for those comments and warm thoughts. The comments that really make me giggle, however, are when you tell me how positive I am. If you only knew….(Philippe will kindly keep his mouth shut at this moment in time).

Anyway, the following will be a bit of the stuff I don’t frequently talk about, namely our day-to-day battle with reflux and feeding. Now, if you remember, when Team Charlotte got the first email back in February 2005, the problem was that Baby Sprout had a heart defect. She still does and we’ll see her cardiologist next week. But the immediate daily issues are feeding and reflux.

So, what’s it like? Today has been day fairly typical of a “teething day.”

6:20 a.m.: I heard Charlotte gag and cough. I ran upstairs to find that she had vomited a big chunk of mucus. I’ll try not to be too graphic, but imagine that it was about the size of 2 silver dollars and I could see that a) it was mucus and b) she still had some food in her tummy from her 11 pm feed.

6:30 a.m.: I give Charlotte her medications, Pepcid, Digoxin and Lasix. She hasn’t taken meds by mouth since November, so I give them by tube. We get dressed and head downstairs where I get her ready for breakfast.

7:30 a.m.: Charlotte is in her high chair, sucking her thumb, indicating that she is hungry. She eats about 25 ml (not quite an ounce) and then quits. She refuses all solid food. This takes 15 minutes. I don’t hook up the pump because we’re enroute to the doctor for a shot and I don’t want her to have too full a belly if the shot upsets her.

8:00 a.m.: We stop at Caribou where Charlotte looks longingly at my coffee (her father’s daughter) but refuses her bottle with a big smile.

8:30 a.m.: Lakeview Pediatrics. For the first time, Charlotte starts screaming as the nurse wipes her leg with the alcohol before the shot. She screams for 10 minutes after the shot. I use thumb sucking to try to get the bottle in her. She takes 15 ml and quits. I hook up the pump. After about 10 minutes (we have to wait 20 minutes after the shot before we can leave), she vomits. Maybe an ounce. Requires that I use the emergency outfit in my diaper bag and bathe her, sort of, in the sink. I manage not get hit.

9:00 a.m.: Charlotte falls asleep in the stroller on the way home. I get very lucky and she makes the transfer into her crib still sleeping. She sleeps until 11:20 a.m.–a very long nap. Not surprising since she’d slept restlessly last night.

11:40 a.m.: Charlotte and I gear up and walk to Whole Foods and the Library. She’s very happy in her Baby Bjorn, wearing a pink hat from Ruth and Maddie. The butcher says she looks like a tulip and everyone smiles at her. By the time we get home she’s sucking her thumb hard and whining for lunch.

12:40 p.m.: Back in her high chair, Charlotte grabs an arrowroot cookie and starts munching, usually a good sign. She eventually eats about 1.5 ounces of formula, in spurts with 5-8 minutes of rest in between. She flings her food, refuses solid food, and indicates she’s done. We hook up the pump. After a little while, we move, pump and all, to the living room floor to play. Charlotte is really happy and giggly.

1:30 p.m.: Charlotte and I are in the armchair. She’s standing on my legs, looking over my shoulder out the window, playing with my hair, and playing with Esther. Yes, Esther is letting Charlotte pet her! We play “lift the baby over mommy’s head.” Baby gags. Mommy moves fast. Get baby to wood floor just in time for a major vomit, probably 2-3 ounces. Comes out her nose. Really upsets her. And, she’s ready for a nap.

2:00 -2:40 p.m.: Ready for a nap, but won’t sleep. Charlotte fusses and finally sleeps around 3.

3:15- 4:00 p.m.: I try to nap. Dream that I hear the baby crying. Maybe I really did. Who knows.

4:15 p.m.: Charlotte gets up from her nap. We were going to go to the park, but I want to get dinner and a bath before bedtime, so we nix that.

5:00 p.m.: Back in the high chair. Over 30 minutes, Charlotte takes almost 3 ounces of formula, 1.5 teaspoons of solid food (peas, carrots mixes with couscous and chicken), 3 or 4 cheese puffs and half of an arrowroot cookie. Keep in mind she’s 11 months old. Most kids her age eat about .25 cups of solid food at a sitting.

5:30 p.m.: With the pump going, we play in the living room. I realize we haven’t done physical therapy all day, but can’t do it with pump going. I put on the Sesame Street DVD we got at the library. She loves it and sits in my lap or dances to about 3 songs.

5:45 p.m.: Bathtime!

6:15 p.m.: Bedtime.

7:45 p.m.: Charlotte has been sleeping a bit fitfully, groaning, turning. I go upstairs to find that she’s turned 180 degrees in her crib. I flip her and plug in the pump.

8:30 p.m.: She’s ootzing again so I go to check. The med port of her tube has opened. This means that some portion of her feed is dripping into the bed rather than going into her. Poor thing has had her sleep interrupted because of a tube malfunction. I think it happened when she rolled over. Usually, it’s a mommy or daddy error when this happens and we feel soooooooooo guilty. So, I have to wake the baby, change her, change her bed. This pretty much guarantees me a bedtime vomit. I take my time, hoping that she’ll give it to me before I put her back in bed.

8:45 p.m.: I start writing this entry. I can hear Charlotte sucking her thumb, rolling around. And I’m just wondering “When?”

9:05 p.m.: Charlotte gags, coughs. I’m up the stairs in a flash to find her screaming hysterically, face and neck and hands covered in vomit. I’m relieved that I put an extra towel on the crib because I hate changing the crib twice in one night. I do change Charlotte. I try to suction her nose because she’s very congested. Nothing comes out.

9:20 p.m.: Get Charlotte back in bed. Fingers crossed.

So, it is now 9:40 p.m. She’s still ootzing. I’ve sprinted up the stairs for one gag to find her thumb in mouth, sleeping. She’s asleep but still groaning and grunting. I’m just waiting and trying to decide whether I should skip her last feed, shorting her about 5 ounces for the day.

All this with Philippe in NY for business. When he’s here, we can get baby and bed changed in half the time with less disruption to her. And all this on about 2.5 hours sleep and a fitful nap.

The tally: 4 vomits and 2 emergency bedtime changes.
My little happiest baby in the world has to suffer so much. Sometimes I feel so guilty about that.

Reflux sucks.

Well, I tried to give you photo to reward you reading all the way down here, but Blogger is being finicky. Tomorrow….

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A Very Good Number

Check it out: Charlotte is playing with a farmhouse toy that belongs to my 10 and 14 year old nieces! Hal & Sue’s house is all decked out for the kid. I swear, they have more baby toys that we do.

Charlotte had her 2nd to last Synagis shot (prophylactic against RSV) of the flu season today. Each time she gets a shot, they weigh her so they can get the dose just right.

Charlotte’s official weight at 11 months and 2 days is —drumroll please18 lbs. 1 oz.!!!

Why is this a good number? Well, first of all she’s gained 1 lb. 5 oz. since being weighed on March 11. Second, in Hebrew the characters that make up the number 18 are also the characters that make the word “life.” (I’ve tried to find an image to upload, but have not been successful.) Seems to me that “life” + 1 oz. at just about 1 year is pretty good for our little munchkin. When we raise a toast, we typically say “L’Chaim” or “To Life.” Yes, now you can all sing along with the tune from Fiddler on the Roof.
And, for the record, tooth #5 is peeking out of the top gums. Unfortunately for me, that means no eating and lots of vomiting, much congestion and mucus and lots of retching. We’ve cleaned up twice today, changing clothes at the doctor’s office, and it’s only 10 a.m. Fingers crossed that she’ll take a long nap so I can get some stuff done before the next explosion.

With my lovely niece Taylor

My sister Laurie reading to Charlotte.

Maybe someone in NJ will finally show Laurie the blog. Maybe seeing her niece’s picture and reading her story will convince Laurie to learn how to use the computer. Seriously. Even Gomez would have given in by now.

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Today’s Adventure

Today Charlotte rode in the cart at Target and the grocery store for the first time. She sits up fine on the floor so I figured I’d try it. It was fun to be able to look at her and chat with her. I showed her two bathing suits and asked her which one she liked better. She grabbed the purple and brown one and giggled, so we bought that one.

On the feeding front: She is still on strike with solid food. She discovered puffy Cheetos at Hal’s house and she’ll eat a couple of those or some veggie sticks, but only a bite or two, if that, of anything else. She’s taking the bottle for a bit if she doesn’t have reflux. Today she ate about 115 ml as we walked around, most of it at the Gap. Later she ate two ounces at Target. April 13, our appointment at CHOW, can’t come soon enough.

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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.