Charlotte's Journey Home

Just a Regular Kid, Sort Of

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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.

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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.


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.

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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.