Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Reflux & Gas–Normal Baby Milestones??

On Thursday (I think), we changed Charlotte’s Reglan medication from 4xday to 3xday, mostly to make it conform to the rest of our medication schedule. Reglan effects the motility of Charlotte’s intestines and keeps the food moving in the correct direction. It is supposed to help prevent reflux.

Since then, little Charlotte has had two major and one minor reflux episodes. Given that she is not an “urper” normally, I was getting worried so I paged the pediatrician on call. Dr. Chang called me back almost immediately. We discussed the quantity of food that the nutritionist wants us to get into the baby every day, the change in medication, and the change in Charlotte’s eating/keeping down behavior. I realized that it’s also gotten more difficult to get a good burp out her since we changed the meds schedule. She’s also had some really fussy hours that seem tummy/gas related.

Dr. Chang suggested that we change the Reglan back to the old schedule and dose and see if there’s a difference.

But, she noted that most 12-16 week olds tend to have more reflux and more gas than they did earlier in their little lives. So…it may turn out that this is another normal milestone 🙂

Silly us, we just keep misreading the signs because we don’t know what milemarkers to use!


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Baby Steps

Charlotte had her weight check yesterday. She weighed in at 9.1 lbs. If you don’t remember, last week she weighed 9.5 lbs. Since Charlotte lost weight, her NG tube will be going back in when Philippe gets home from work today. We’re a bit disappointed, but not surprised. Charlotte has been eating well, from a suck-swallow-breath perspective. However, she consistently eats only half of what she should eat at a sitting.

The good news is that she is finally on the growth charts—her height, in fact, puts her in the 75th percentile for height. Her weight is in the 10th-25th percentile. As for the cross-section of height for weight, she is still not on the charts.

We go back for another weight check in 2 weeks. With any luck we’ll be able to do another NG tube removal trial.

On the Mommy front:
Every woman I’ve talked to who has pumped and stored breast milk has a story of several months of lost milk due to a freezer door being left open, power outage, or something. Ours is a near miss story, thanks (again :)) to Colleen. Our power was turned off by ComEd on Sunday evening around 7 p.m. When the problem had not been resolved after 18 hours, Colleen volunteered to take the “liquid gold” to her extra freezer. Thank heaven! We finally got power back around 8 p.m. last night–25 hours later–and freezer probably wouldn’t have kept it frozen that long. (If you’re worried, we slept in our cool, comfortable basement. Charlotte’s first camping trip.)

Well, Charlotte is “paging” me and it’s time for her Viagra. (That’s just too funny, so I have to say it.)

Gotta run.


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The Best Day Ever

We think a picture is worth 1000 words…

Yep….today Charlotte was released from CV Surgery to Cardiology. Dr. Young, her cardiologist, gave the following orders:
–d/c oxygen
–d/c NG tube. This is probationary. Charlotte is to eat on demand for a week and then go to her pediatrician to be weighed in. If she gains weight, we can keep the NG tube out for another week. If she stays the same or loses weight, the NG tube goes back in. Keep your fingers crossed!!

Lots of other boring orders changing her drug dosages.

Most importantly, Dr. Young was “pleasantly surprised” by Charlotte’s progress and indicated that things were going even better than she had expected.

After a loooooooooooong day at the hospital (9 a.m.-3:30 p.m.–visits with Xray, Echocardiogram, EKG, CV surgery and Cardiology, plus social visits with 2 PICU nurses), little miss is asleep on my arm as I type this.

p.s. d/c means “discontinue” 🙂


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How Deeply Do We Sleep?

Well (and this is a true story)…this morning Charlotte beat the alarm clock to her 3:00 a.m. feeding. She started crying around 2:40 a.m. I swear Philippe rubbed my belly (like we do to calm the baby) and told me that he would take care of it. I really thought he did.

Next thing I knew, I heard Philippe getting out of bed and asking if I was going to the baby. Hmm…was I dreaming about the belly rub? We still don’t know–he can’t say for sure that he did not do it and I don’t know if I dreamt it.

And, if you’re worrying, the baby got fed and went right back to sleep.


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Just Us Girls


Charlotte is 10 weeks old today. No matter how slowly time dragged in the hospital, her first two and a half months have flown by.

Nothing flew so fast as Philippe’s paternity leave. He went back to work today. That’s a big update in itself.

Charlotte and I have had a fine, quiet first day alone together. This morning we went to the pediatrician for her first shots. She was a champ! She cried a bit, maybe 5 minutes, then finished her bottle and went to sleep for several hours. Later this afternoon she fussed a bit, but Tylenol took care of that. I suppose that after everything she’s been through a few shots really pose no challenge for her! What a little trooper.

Other milestones:
–At the doctor’s office, Charlotte downed her entire 65ml (~2 oz.) breakfast in 25 minutes–healthy baby time. She’s not done as well the rest of the day, but I think the shots probably have her a bit tired and out of sorts.
–Official pediatrician weight: 9 lbs. 5 oz. Go Charlotte!


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Almost 9lbs!!

A late update because this past week has been more of the same. Charlotte met her pediatrician, Dr. Salem, on Monday. She was very nice. Right now, she’s leaving most of Charlotte’s medical care to the heart teams, although she mentioned that she would change the Zantac for a more palatable drug when we begin giving medications orally. Charlotte will go back to Dr. Salem on Monday for her first and second month vaccinations.

On Tuesday, Charlotte was seen by the CV Surgery nurse and the Speech Pathologist. She’s doing well on both fronts, but coming along slowly on oral feeding (at least from our perspective). No changes in meds or oxygen. Her lungs were clear so we got the go-ahead to feed 100% breast milk, but we have to fortify it to add calories (adding Enfamil and vegetable oil, for those of you who are curious). We still have to add rice cereal to thicken the formula so that she can control it. But at least we’re finally beginning to empty our freezer.

It’s been a bit rough this week—we’re both very tired and sometimes have no idea why she’s crying. This parenting stuff is rather exhausting and not always fun. We know that when she starts smiling and grabbing her bottle we’ll feel better about it, but in the meantime….To all you parents who told us the first 3 months were “exhausting but exhilarating and fun” we say “phooey.” Try hard and frustrating, but worth it eventually. Do parents forget these months because of sleep deprivation-induced amnesia? Or is there a conspiracy to glaze over the truth so as not to scare people off of having kids? J

We’ve decided to forgo breastfeeding for a number of reasons: 1) Logistical—we realized that if I pump, fortify and feed, I’ll be doing nothing else all day and 2) Even if Speech gives us the go ahead to breastfeed in 2 weeks, Nutrition might still have us adding calories. Bottom line: We have no idea when the doctors might allow Charlotte to go to the breast. It’s taking her long enough to get the hang of the bottle and we’re concerned that switching to breast in a few weeks would set her back.

Philippe goes back to work on Monday and a whole new phase will begin for us. I’ll be solo taking Charlotte for her shots on Monday and for her Cardiology and Surgical consults on Wednesday. I’m ever-so-grateful that our pediatrician is in walking distance!

I’ll be adding pictures to the blog this week, so check back! (Pictures will be added retroactively, too, so you’ll be able to see the past 9 weeks). She’s awfully cute and very photogenic.


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Normal 8 week old :)




I’ve wanted to write a new update all week because we had a number of milestones to report, but now that Charlotte is home, it’s hard to get to the computer. Surprise, surprise.

The quick skinny (with deference to my brother who called my previous post “spam” ):

7/4: Charlotte was rather fussy all weekend. After increasing the amount of food she was getting and not quelling her irritability, we took her to urgent care at the hospital on July 4th. Our visit with her nurse Julie ended with two conclusions: 1) she had a bit fluid on her lungs AND 2) she’s a normal 8 week old, being a bit fussy. Normal! Yipee!!

7/5:
Regular CV surgery follow up showed clear lungs (extra doses of lasix seems to be working.
Weight gain up to 3.77K (just around 8 lbs.)
Charlotte graduated to half Portagen/half breast milk and to eating on demand, taking as much orally as possible.

7/7:
Feeding orally seems to be going well. Charlotte is beginning to tell us when she’s hungry. Unfortunately, she seems to tire out after about half of her feed (~1 ounce). She falls asleep and then wants more in 45 minutes. So, if we don’t chase her oral feed with the NG tube, we end up feeding her every 30-45 minutes. We’re trying to find a balance in order to get her to 100% oral feeds.