Ounce by Ounce

Baby weigh in: 10 lbs 6 oz. Only up 3 oz. since last week, but 0.5 ounce/day is the minimum we're looking for, so not too shabby.

Charlotte's other milestones--she's smiling and starting to giggle (a lot). And, as I sit here typing this, she's lying on her side, reaching for toys.

Did we tell you she's cute? :)

Support Children's Memorial Cardiac Services

Hi Everyone, and especially the girls on Team Charlotte-Chicago,

As most of you know, I'm not really fond of soliciting money from people, even when I deeply believe in the cause. But, in the case of Children's Memorial Hospital and its Cardiac Services team, I must make an exception.

I'd like to tell you about an event that I hope you'll consider attending with me:

50th Annual Gold Coast Fashion Award Show

The Children's Service Board of Children's Memorial Hospital invites you to celebrate 50 years of fashion and philanthropy at the 50th Annual Gold Coast Fashion Award Show, the little black dress.

This fun and fashionable event will benefit Pediatric Cardiac Services at Children's Memorial, ensuring that the hospital can continue to provide comprehensive, state-of-the-art cardiac care to children in need.

Super and Regular raffle packages worth up to $10,000 will be raffled off!

The event will be held on Thursday, October 6 at the Chicago Hilton and Towers (720 S. Michigan Ave) in the International Ballroom. Valet parking will be available onsite. The Hilton is also easily reached by El and is not too far from either Metra station.

Schedule of events
11 a.m. — Cocktails
Noon — Luncheon
1 p.m. — Fashion Presentation
Purchase tickets
Order online Order your event and raffle tickets today!

Please don't make a special trip to Chicago for this event. But, if you happen to already be here, or you live here, let's make an afternoon of it! Let me know if you'll be joining me by clicking on the comment link below.

And, as always, feel free to share this invitation and Charlotte's Journey Home with whomever you feel would be interested.

Cardiology Update

Today’s medical update comes in two parts.

First, we had a hip ultrasound to rule out hip dysplasia. This was requested by our pediatrician because of the Torticollis. The preliminary results look good, but we’ll wait to hear what our pediatrician has to say. Sheila, the sonographer, was great—she had the room warmed so that Charlotte wouldn’t get chilled during the exam. We had to dress/undress the baby 3 times because the Radiologist kept sending Sheila back for a more precise view. Charlotte was a trooper—aside from peeing on the exam table, she was the perfect patient. I wish I’d had the camera so that I could memorialize my view: I was holding her head to keep her lying on her side. From there I say her tiny tushy with Sheila’s gloved hand wielding the US wand. Too cute.

Next, Cardiology.
The fun part—during her 20 minute echocardiogram, Charlotte watched the screen (looking up over her left shoulder) and smiled and giggled. She didn’t cry at all and was absolutely adorable.

The not so fun part: The doctor is seeing above normal pressure in the right (pulmonary) ventricle. This may be due to a) pulmonary hyper tension or b) a minor obstruction in the pulmonary artery. Unfortunately, while the echocardiogram gives a lot of information, it cannot differentiate between these two causes.

So…we’ll be adding a new doctor to Team Charlotte: Dr. Steven Pophal. Dr. Pophal will perform a diagnostic cardiac catheter procedure that will allow the doctors to look at the arteries with a teeny-tiny camera and measure all of the pressures directly (which US cannot do). If he sees an obstruction, he may try to open it with a balloon procedure, if he deems it safe. (Charlotte is too little for a stent, so that’s the only procedural option.) If there is no obstruction and the problem is deemed, by direct measurement, as pulmonary hypertension, Charlotte may go back on oxygen.

This procedure will occur under anesthesia and Charlotte may or may not be intubated. In all likelihood she will be admitted to PICU overnight. (For our PICU RN friends who are getting ready to speed dial to get on Charlotte’s schedule, we don’t have a date yet :) )

We know this is the best thing for Charlotte. And we’re not surprised that this diagnostic tool is necessary—our surgeons considered it back in June. But, I, for one, am a bit saddened by it. It feels like a step backwards or a bump in the road. We’ve settled into a lovely routine and going back on oxygen would be a drag. As a result, I find myself hoping that Dr. Pophal needs to open a minor obstruction. I have a feeling that this wouldn’t be the better option for Charlotte and I’m a bit guilty that I’m hoping for an outcome based on convenience. I’ll try not dwell on that. Bottom line: whatever the outcome, it sounds like she’ll have to outgrow the cause and in the interim, her doctors will take good care of her.

Timing of the procedure: sometime within the next month. We’ll know next week.

p.s. Babies are like puppies--whenever we walk around with Charlotte, we meet people. Recently I met a mother of a 5 month old. The mother is also a cardiac nurse at Rush. She mentioned to me that if we would ever need a "cardiac interventionist," one of her favorite colleauges had just left Rush for Children's. His name? Dr. Pophal. So the word on the street, literally, is that he's good and he's good with parents.

Double the Fun

So....Charlotte's official weigh in: 10 lbs. 3 oz. One more ounce and she's twice her birth weight. :)

Philippe's Girls

Yoga Mama!

Early Intervention Assessment Visit

The Early Intervention team came to assess Charlotte today. Basically, Early Intervention is a state-sponsored program for 0-3 year old children who may have some kind of developmental delay. Since Charlotte was 4 weeks early and then spent another 7 weeks in the hospital, she’s eligible for assessment and services, if prescribed. Generally, our insurance should cover the services. If not, the state charges a “family fee”—one flat monthly fee, based on household size and income, that covers all the services.

It was quite a scene—a team of six came to assess Charlotte: the Client Services manager, Nurse Manager, Speech Therapist, Physical Therapist, Occupational Therapist, and Developmental Therapist. They arrived within minutes of one another. Philippe answered the door and said, “Gee, I didn’t realize this was going to be a party!”

And, party it was. Of sorts. The therapists and nurse bombarded us with questions, all at the same time, while three of them poked, prodded, measured, and assessed Charlotte. We were fielding questions, trying not to give duplicate information, and trying to listen to what they were telling each other. I wish I could paint a complete picture of this structured chaos.

Everyone was quite upbeat and supportive of our efforts to date. The PT was amazed that our pediatrician had recommended a hip ultrasound as these are fairly new guidelines—confirming that our pediatric practice is on the cutting edge and does the right things. We were energized and exhausted by the 90 minutes. (Charlotte and I passed out on the couch when they left and were still sleeping when our pal Eve got here).

We got on-the-spot results and recommendations. Here’s the scoop: The Developmental and Speech Therapists felt that communication skills were all age appropriate (2 months, adjusted for gestational age to accommodate her early arrival) and recommended no follow up at this point. The Developmental Therapist wants to reassess her at 6 months of age.

As we expected, the Physical and Occupational Therapists recommended that we have weekly PT and OT to help us with her twisty neck and flat head. In addition, we’ll work on weight bearing (she’s not doing that at all) and keeping her on par with milestones for her age. PT isn’t willing to commit to the diagnosis of Torticollis, but said that regardless of what you call it, we will treat the issues in the same manner. The RN recommended that we have a Feeding specialist come in twice a month to monitor sucking, latching, eating, etc.

We can accept or refuse any services. We’re going to go with the PT and OT, of course. We want to aggressively deal with her neck and head so that we can see results quickly, and avoid the dreaded cranial band. As for the Feeding Specialist, we’ll probably have them come once and see what it’s all about. Since we’re working with someone at Children’s already, we don’t need redundancy.

In case you’re curious, all services will occur at our home. Part of the state’s approach is to deliver services in the child’s natural environment. I’m very grateful that getting Charlotte what she needs is not going to increase our schlepping time just yet.

Baby Weight Watching

Charlotte topped out at 9 lbs 15 oz. today. And, she grew 1/4 inch to 23.25 inches. Long skinny thing she is.

The pediatrician was happy with her weight gain, but would like to see her exceed 0.5 oz/day so that she can begin "catch up" growth. Now, we cannot even get her to take all of her food orally yet, so how are we going to get her to eat even more?! Especially since everyone agrees that we should no longer feed via NG tube when she's asleep and hasn't declared that she's hungry? And since she doesn't always tells us she's hungry? (Seriously, I can't imagine that she wasn't starving when she slept for 7 hours last night). I decided not to rant--instead I'm going to take it up with Dr. Ramadan, one of the other partners, at next week's weigh in.

Other tidbits--the pediatricians want us to get a GI consult, just to be sure that everything is good with her gastrointestinal system. Also, they recommend an ultrasound of her hips--even though the physical exam is fine, babies with Torticollis and babies who are suspected of having been constricted in utero can have dysplastic hips (not fully developed).

So...it's off to Children's Memorial Hospital I go for more doctors' appointments, more consults, etc. Fingers crossed that these are just precautionary measures and that they don't find anything wrong.

Funny Baby Tricks

Philippe looked in on Charlotte at around 6:45 a.m. this morning and everything was as it should be.

15 minutes later he returned with her morning meds to find this....if you can't figure out what's not quite right, note that the business end of the NG tube is in Philippe's hand. :-)

We think she sticks her thumb in her mouth and then a finger slides up under the tube. When she pulls the thumb out of her mouth, the tube comes out, too. Last time she did this, Philippe had to come home from work in the middle of the day to help me.

All I can say is that we started the day laughing at our little troublemaker.

p.s. Charlotte is grounded for this one! We're keeping tabs on her mischief so that she can "serve the time" when she's old enough.

Keeping Things in Perspective

Capturing our silliness (delirium?) for posterity:

(We apologize if you don’t laugh as hard as we do. Maybe these are funny only in situ, or maybe we’re losing our minds. You vote!)

**We call this photo “State of the Art Baby Sleep Positioner.” Charlotte’s head is supposed to be on the pillow!

**Getting ready to get Charlotte to an 8 a.m. doctor’s appointment, Philippe called out to me, “I’ll take care of the drugs” (meaning getting meds ready to take with us). I responded, “Okay. I’ll get the food, you get the drugs and we’ll be an administration.”

**When Charlotte gets really, really hungry, she attempts to chew her entire hand, enthusiastically shoving her fist in her mouth. To get her to move her hand so that I can get the bottle in, I have to constantly remind her, “Charlotte, you’re still a vegetarian. You can’t eat your hand (no teeth), so move it over for your bottle.”

**Giving Charlotte her Viagra, we make sure to remind her that if she gets an erection that lasts more than 4 hours, she must seek immediate medical attention.

Tough Day (kind of long)

While ultimately this update is not alarming (I hope), 8/9 was a most difficult day. In fact, I’m writing this on the 10th because I just couldn’t deal with the day and its events.

Charlotte’s weekly weigh-in (Baby Weight Watchers, I like to call it): I was optimistic that she’d gained weight even though she’s barely getting 500 ml food a day if we feed her only when she asks for food and then finish those feeds with the NG tube.

I was partially right. Charlotte weighed in at 9 lbs. 11 oz., gaining only 2 oz. since last week. She should gain 0.5 oz/day or about 3.5 oz/week, so this wasn’t good news. Dr. Ramadan (who we fell in love with, by the way) spent about 15 minutes calculating exactly how many K-calories per kilo Charlotte should take in each day. I forget that number, but the bottom line is that 430 ml/day is “maintenance” and Charlotte needs more like 520-560 ml/day to grow. So we’re back to “how do we get all that food into her without feeding her in her sleep with the NG tube and pump or waking her up? And still wean her off the tube? And especially now that she’s sleeping 5-7 hours a night?”

New feeding strategy:
--Let her tell us when she’s hungry.
--Let her eat for 30 minutes and then stop so she doesn’t fatigue.
--Count a feed as 90 ml (rather than 70) and if she doesn’t eat that much, chase through the NG tube.
--If she goes more than 3 hours without asking for food, get her to eat.

In other words, I’m back to obsessing about every drop of intake and spending my entire day feeding the baby, it seems. I ended up sitting in the doctor’s office, in fact, for an hour because I fed her, but she only at 40 ml, so I had to feed 45 ml by syringe by hand through the tube. Tears streaming down my face from exhaustion and exasperation. Later, she fell asleep eating again and I put her in her crib and attached the pump. She woke up halfway into the feed and whimpered (still hungry, not realizing she was eating) until it was done. I whimpered in sympathy.

Got better toward the end of the day—she ate better and ended the day several mls ahead (enough that she gave several of them back to us, if you know what I mean :-)).

Yet another diagnosis: Charlotte constantly turns her head to the left and twists her body in this direction. We’ve observed this getting worse so we mentioned it to Dr. Ramadan. The doctor took a good look at her, flipped her over and massaged her neck and diagnosed Torticollis or “wryneck.” Basically, she’s got shortened, stiffened muscles on the right side of her neck so it’s hard for her to turn her neck that way. Torticollis leads to flat head and flat head to Torticollis. Best information (and least alarmist) that we’ve found is at http://www.childrensmemorial.org/depts/rehab/torticollis.asp.

Charlotte’s primary nurse, Nancy Smith, told me today that this is very common in babies who have spent a lot of time in the ICU and that she know it can be overcome.

This is fixable (thank G-d!). Charlotte needs “tons” of tummy time. She’ll likely need physical therapy and occupational therapy as well. The state Early Intervention team should be assessing her next week anyway, so we’ll work with them to arrange that. In the meantime, we sit on her non-preferred side, dangle toys there, and tummy time, tummy time, tummy time. Looks like it’s a good thing I’m not working right now since she’ll need lots of special attention and more appointments with doctors, therapists, etc.

(By the way, we’re hearing from lot of people (physical therapists, education students, RNs) that sleeping on the back may be on the way out as the advisable thing—children who sleep on their back apparently are not developing back/neck/trunk muscles appropriately and are prone to flat head. So the folks who advise on these things are re-thinking the whole approach to preventing SIDS.)

Six Hours of Wiggling

For the record, we positioned Charlotte lengthwise on the crib mattress when we put her to bed last night. She was positioned in between two rolls velcroed on to a crib pad--a state of the art positioning device sold by RightStart. Please note how we found her at 5 a.m. this morning.

Why were we looking at Charlotte at 5 a.m.? Because I turned out the light at 11 p.m. and woke up with a start at 4:55 a.m. realizing that I hadn't heard her all night. Not a peep, not a cough, not a wiggle. Clearly she was busy! But I slept through all of her usual nighttime grunts and squeaks and she never asked for food. 6 whole hours!

Suck--Swallow--Breathe

Charlotte had a follow up swallow study with her speech therapist, Susie Trela, at Children's today. This is about the coolest medical procedure I have ever seen. We sat the baby in a chair, fed her a bottle filled with half barium and half formula, and watched her swallow via video x-ray. Susie experimented with formula consistency and with bottles and nipples. We observed the formula as it came out of the bottle, hit the top of her mouth and then squirted down her throat.

The results--with the thin liquid, Charlotte is still aspirating trace amounts, meaning that some liquid is going down "the wrong way," into her airway. This is dangerous, of course, and worrisome because Charlotte does not exhibit any symptoms of aspiration--no coughing or discomfort. With thickened liquid, she's fine.

So...we'll continue to thicken the formula. Susie shared samples of a product called SimplyThick which works better than rice cereal because it doesn't clog the nipple. She's eating really comfortably now!

We'll have a follow up swallow study in 4-6 weeks. Next time, I'll bring my camera and post some cool pictures!

If you’re wondering….Charlotte’s suck-swallow-breathe concerns come from not bottle or breastfeeding until she was 6 weeks old. They are not a direct result of the heart defect or a complication from surgery, but rather a form of developmental delay that is sort of a secondary result of surgery and hospital stay.

Transitioning off NG tube--a poll for Team Charlotte

I’m sitting in my den watching Charlotte sleep peacefully in her Fisher Price papasan chair. For you fellow yogis--she’s in a beautiful reclined Baddha Konasana, looking incredibly peaceful. This is terribly frustrating actually because instead of sleeping, she should be eating. She hasn’t eaten since 6:00 a.m.

We’re having a hard time figuring out how to get her to eat regularly so that we can use the NG tube to complement what she eats herself, rather than using the NG tube to feed a sleeping baby. The nutritionist at Children’s tells us that she needs to get 560 ml of food daily. But, in order to get her off the tube, we’re only supposed to feed her when she tells us she’s hungry. Since she only asks for food about 7 times a day, she’d need about 80 ml per feed. If she eats some and we NG the rest (she’s never eaten 80 ml), she seems to “urp” up the portion she didn’t ask for. We’ve had to readjust her Reglan (the medication that keeps her food moving in the correct direction) back to its original schedule to prevent “urp” episodes, so I’m back to medicating her 7 times a day.

Since I’m having a hard time getting the pediatrician on the phone this morning, and the nutritionist only cares about the quantity of calories taken in, I’d like to take a poll of you, Team Charlotte. If you have a chance, can you click on the Comment link at the end of this post and answer a few questions for us?

--On average, how frequently did your 12 week old ask for food (every 2/3/4 hours)? Please tell us if your baby was bottle or breastfed, as we’ve heard there is a difference in terms of feeding frequency.
--On average, how much did baby eat at a feeding (2/3/4 ounces)?
--Did baby eat or sleep between feeds consistently, or did baby sometimes eat every two hours and then the next day eat only every 5 hours?
--If you had a baby who had to transition off of an NG tube, or know anyone who has, can you offer any advice?

Thanks!!