Saturday, July 30, 2005

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. 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!

Tuesday, July 26, 2005

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.

Wednesday, July 20, 2005

The Best Day Ever

We think a picture is worth 1000 words... 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" :)

Tuesday, July 19, 2005

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.

Monday, July 18, 2005

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!

Saturday, July 16, 2005

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.

Thursday, July 07, 2005

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!!

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.

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.

Monday, July 04, 2005

July 4th Message from Charlotte

Peace ya'll. Happy Independence Day!

Friday, July 01, 2005

First Week Home

Notes from Amateur Hour
I’m pretty sure that Charlotte is screaming “Who let the amateurs take over?!” But, I’m constantly reassured by my friend Colleen’s comment that it is amazing that children survive their parents. Given that she has 3 beautiful, happy daughters, I’m going to take her word on this one.

So, are you wondering what’s going on at our house? Let me tell you about the first 24 hours. Simply put, we (I) screwed up nearly everything we possibly could have. Whatever we didn’t mess up in the first 24 hours, we managed to get to in the next 24 hours. Like what, you ask? Here’s the skinny:

Tuesday: We arrived home a bit later than anticipated and just barely had time to get Charlotte and the delivered feeding equipment through the door before the home health care nurse arrived. Miriam, the nurse, came to show us how to se the feeding pump; make sure we understood the maintenance of the NG tube; and do a baseline vitals check of Charlotte. We were thoroughly disorganized when she arrived. Just a big, plain mess.

Because of the mess, we basically did this entire nursing visit on the floor in our living room. When Miriam left, our problems began:

Amateur Act #1: I tried to stand up with the baby, got the NG tube wrapped around me and, yes, pulled it out of her nose. Here I was so worried that she would pull it out and instead I did it. Daddy to the rescue—Philippe put it back in in record time. We did do a botched job on the tape, however, so it’s just a matter of time…

--Somehow, it was suddenly nighttime. I offered to do the midnight and 3 a.m. feedings.

Amateur Act #2: Apparently, I wasn’t paying close enough attention to Miriam when she told us how to program the pump. I did it backwards. So, instead of being set to deliver 45 ml in 30 min, I had it set for 30 ml in 90 minutes. Poor baby was sooo hungry. Poor Mommy couldn’t figure out what was going on. Poor Daddy had to get up to help.

Amateur Act #3: The midnight feeding ended around 2:30 am (should’ve been over around 1 am), and it was time to start again. Because of my hiccup with the pump, I couldn’t re-program it (this is because the pump doesn’t have an “erase” or “clear all” button and it was looking for more food to deliver from the previous feeding. Daddy to the rescue. Again.

Wednesday: The day went so smoothly that we should have anticipated something going (okay us doing something) wrong in the evening.

Amateur Act #4: I had midnight feeding duty. Charlotte started sucking the bottle so hard and dribbling all over. I couldn’t figure it out. Called for Philippe (who was asleep). He took one look and said, “Make her take more frequent breaks so she slows down.” I did. She had sucked down the first 15 ml in about 5 minutes. Too fast!!
(Don’t forget—unlike most babies we all know, Charlotte has to learn to coordinate the suck-swallow-breath actions and is at a disadvantage because she was 6 weeks old before she started. She can aspirate into her lungs (food going down the wrong way) more easily than most babies due to her surgery and delay. Fast eating is not cute for her.)
Why did this happen? Well, it didn’t occur to me until I started cleaning up that I had forgotten to mix the rice cereal into her formula. We thicken the formula to make it easier for her to control her suck and swallow, in an attempt to avoid aspiration and help her build endurance. (Yes, we do talk about feeding as if it were an athletic event. For Charlotte, it is.)

Amateur Act #5: So, you’re all saying, “Yup, Mom’s an amateur.” Well, Dad had his turn at 3 a.m.. Passing in the hallway, I neglected to tell him about my gaffe with the rice cereal. Guess what Daddy did (or didn’t do)? Being smarter than me, however, he realized it halfway through the bottle, however, and simply put the rest of the bottle in the NG tube.

We won’t be making that mistake again. There’s a big note on the counter now. (Okay, we did almost do it Thursday evening, but caught it in the nick of time.)

Amateur Act #5: Mom lost track of time and forgot 5 pm meds. When I remembered, I only gave her one medication. I didn’t remember the other until 7 pm. Fortunately, I remembered the critical medication.

I shouldn’t jinx us, but so far today, we’ve done things the way we should have!

The Charlotte Update

Baby Charlotte is eating like a champion, taking all (or nearly all) of her bottle at every feed for the past day or so. This could lead to all bottle feeding by our surgical follow up appointment (Tuesday). She has gained weight (3.7K). We think she’s really hungry, so we got the okay from the dietician to increase her formula. She no longer fits in her cute tie-dye onesie L. Hip-hip hooray!!

We’ve got the house super-organized around her needs. Enough so that we were able to handle having dinner company (our pal Lisa in from Denver. Looking a fabulous 13 weeks pregnant herself) with a little help from Costco.

The kitties continue to be interested from a distance. Miles has been caught red-pawed jumping onto the changing table and rubbing up against the diaper box. Esther sniffs and seeks much more attention from Philippe. But she cuddles up with me to sleep (when I can manage to find a bed).

And, best of all, we went for a walk yesterday. Yep, we have officially joined the Roscoe Village stroller brigade. Pictures will follow in a day or so when we can get the roll finished. We made 3 stops and Charlotte was a little celebrity at all. Three guesses where the first stop was? Yes, my friends, Charlotte has been to Starbucks! Seriously, where else did you think we’d go? And, where else would a new urban mom meet moms?

Then we visited our optician, who will be a new mom herself soon.

Finally, we stopped by our friendly neighborhood pharmacist who has been helping us with all of Charlotte’s medication requirements. They were so thrilled to meet her. There really is nothing like using a neighborhood pharmacist rather than your grocery store. As the Goldmans know from years of patronizing Mr. Goldstein’s Northfield Pharmacy, a family pharmacist becomes family. And, it is a more European model, so Philippe is much more comfortable, as am I.

The Funniest Advice or A Day in Our Life (for now)

Please forgive us if we laugh when these two pieces of advice are given:
--Just sleep when she sleeps. Really, it will help.
--Get her on a schedule. (By the way, all you moms out there, why is that you, who know best that baby defines his/her own schedule at first, say this the most often??? J)

About that schedule thing: Charlotte is on a schedule. A very strict schedule defined by her doctors. She eats every 3 hours, whether she demands it or not. Rather than Charlotte waking us up because she’s hungry, we have to wake her up to feed her. Why? Well, remember, she was fed by NG tube exclusively for the first 6 weeks of her life, so she has to learn to feel hungry. We’re confident, based on her screamin’ Mimi attack last night, that she is learning…

About sleeping: We’d love to. We’ve given this advice to new parents ourselves.

However…each feed requires about a 10-25 minute set up. We have to measure out a portion for the bottle and a portion for the NG tube. Then we mix her bottle formula with rice cereal (see above). Then, we have to wake her up which can take 10 minutes or more itself. Charlotte takes 15-30 minutes to eat 1 oz. of formula. Then the rest runs through the NG tube for either 30-45 minutes, depending on whether it includes unfinished bottle formula.

You adding this up? So far, we’re talking about approximately 1.25 hours to feed her. And another 15 minutes or so to clean it all up. Meantime, Charlotte is sleeping through the NG tube feeding (most of the time). And we’re about 45 minutes away from having to start all over. Seriously.

At 9 am and 9 pm, we also have to deliver about 6 medications. Measuring them out takes about 10 minutes. Whoever measures has the other person cross-check dosage (just like in the hospital).

Other meds are delivered at 1 am, 1 pm and 5 pm (off the feed schedule).

Don’t get me wrong—we love your advice and we look forward to being able to apply it. Soon. I really hope soon.

Some Giggles from the Insurance Front

As we’ve told all of you, Charlotte has experimented (unwittingly) with most of the things we hope she stays away from as a teenager:
Ø She’s been on morphine
Ø She’s been treated for morphine addiction with a methadone treatment
Ø She’s used K-Y jelly (to hold bows in her hair)

And, she’s on Viagra. Yes, you read that correctly. Viagra. Apparently, the original use for Viagra was to treat pulmonary hypertension.

So…on Monday, our Surgical Nurses started working with our Case Manager to arrange for discharge. This included checking insurance, pre-certifying all of her home healthcare (100% covered, thank G-d), and clearing the drugs.

Elizabeth told us on Tuesday that her conversation with Blue Cross Blue Shield (BCBS) went something like this:

BCBS: We can’t authorize Viagra. It’s a gender specific drug and the patient is a female.

(Us: Duh. And she’s a 7 week old at that. No, she is not being treated for erectile dysfunction).

Elizabeth: Yes, I understand that Viagra’s more common use is ED, but it is also used to treat pulmonary hypertension in pediatric patients…..It’s medically necessary, etc.

BCBS: (after some conversation). Okay, we can cover it, but Viagra is limited to 4 pills a month

(Us: So, the average male with ED is permitted by the insurance company to have sex with his partner 4 times a month. We wonder if that represents some serious research into the average urges of the average male suffering from ED or is it an attempt to prevent the “recreational” use of the drug ?)

I don’t know if this is as funny to you reading it as it was to us, Elizabeth, Maureen our caseworker and the nurses. But we just about fell off our chairs. (And since Philippe is not piping in here, I have to add that even though little darling is not taking Viagra for recreational purposes, I do remind her daily to “seek immediate medical attention if she has an erection that lasts more the 4 hours.” Mostly this is for my own entertainment, but I do get giggles from Philippe and the nurses.)

Like any new parents who’ve just gotten baby home from the hospital, we are beyond tired, happy, scared, and have a tendency to end phone calls by saying “Oh geez, gotta go, damn…” Does anyone know where they keep the instruction manuals for these things??