Daddy’s Little Valentine & 9 month check up

Just a little valentine to Daddy.

9 month check up:
Weight: 15 lbs. 13 oz.
Height: 27.75 inches

Other milestones: Charlotte woke up with tooth #3 yesterday. Yep, she simply woke up with a new tooth. That may explain some of her vomiting and utzy sleeping over the weekend. We noticed today that tooth #4 is on its way in as well, more slowly and more painfully than the others.

She also has her first icky, drippy cold. What fun.

Dr. Ramadan was quite satisfied to see Charlotte’s weight plotting just above the 5th percentile on the growth chart. Her height is around the 50th percentile.

Mainly, our pediatricians want to see steady growth somewhere on the growth chart. They are not as focused on a specific number. Dr. Ramadan was delighted by Charlotte’s progress though she seemed a bit concerned that baby isn’t yet sitting on her own yet. She noted the same tight hamstrings that our PT is working on.

On the other hand, the dietician at our GI doc’s office declared this week that Charlotte has “acute mild malnutrition.” This seemingly oxymoronic term (we thought it was a typo) is a real term. I’m still trying to understand what that means. The GI doc and dietician would like to see Charlotte closer to her “ideal” weight for height.

I tend to side with the pediatricians. Dr. Ramadan pointed out to me today that her colleague Dr. Chang’s daughter was at the 3rd percentile her “entire life.” Not surprising since her mom is a tiny, slight woman. It’s in her genes. On her maternal side, Charlotte has long, thin genes. I don’t expect her to ever be a butterball, but apparently the GI folks do. So… I’ll discuss this at length with Dr. Sentongo at our GI follow-up next week and then we’ll see what they say at the Feeding clinic.

Hiding from the Paparazzi

If it’s 7 a.m., Ilene and Charlotte (and 3x this week Philippe) must be headed to a medical appointment. Charlotte likes to go incognito.

A few brief updates:

Helmet: Charlotte’s hot spots didn’t go away after a full day out of the helmet, so we had to take her in again this morning to have Pat take a look at her skin and check the fitting. We think we have it right, so the helmet is back on.

Rehab swallow study: Charlotte went for a follow-up swallow study yesterday to ascertain whether or not she is still experiencing silent aspiration (having liquids go down her airway when she swallows). Basically, they mix barium with her food/formula and do a video x-ray while she eats. As I mentioned the last time we did this (8/2), it is one of the very coolest things I’ve ever seen, medically speaking. This is a picture of Charlotte’s jaw and throat, in profile.

Unfortunately, the study was, in my opinion, flawed and not conclusive. Why? Because once again the CMH Radiology reception area screwed up–they neglected to alert the Speech Therapist that we were there (at 8 a.m.) and by the time I asked why we were waiting (8:45 a.m.) we were perilously close to Charlotte’s nap time.

So, despite not having eaten since midnight, Charlotte sucked for a total o 1.20 minutes. She screamed and screamed. The therapist came to the conclusion that she is still aspirating and told us to go back to a slow nipple. Problem is, with a slow nipple and thickened fluids, she sucks and gets nothing.

I’m not convinced by this study and given that the therapist told me to come back in 2-3 weeks, I don’t think she is either. Why not? 1) The exam was performed by a therapist who had not previously met Charlotte and I don’t think she’d seen the previous tapes. And 2) She was screaming and crying throughout the test. I believe that would make anyone aspirate.

Charlotte was just glad to go home.

How’s Charlotte?

Growing like crazy, thanks.

Today’s helmet refitting report:

  • Charlotte’s noggin grew 3mm in the past week!!
  • Her asymmetry was originally a differential of 12mm from side to side. Today, it is reduced to 3mm.
  • She’s growing so fast that the helmet is making “hot spots” or dark pink spots and some abrasion on her head. We’re keeping it off until tomorrow to make sure that her skin doesn’t get any more irritated.

As much as I hate this helmet (and, no, I still don’t think the darned thing is cute), it is one of the two best decisions we’ve made for our daughter. Originally, we’d hope there was a slim chance she’d be done with it by her first birthday. Now we know it’s practically a sure thing.

The cardiac report (or as I like to say, “Oh, that’s right, I remember now, Charlotte has a heart problem”):
It turns out that the lung perfusion scan showed essentially the same information as last time we saw it: 73% of her blood is flowing through the left pulmonary artery; 27% is flowing through the right pulmonary artery.

What does this mean? In a typically developing baby the blood flow should be nearly equally divided between the RPA and the LPA. Clearly, we’re not at an ideal place. This flow will be used as the indicator that a) Charlotte needs another balloon angioplasty procedure or b) it’s time for her next open heart surgery. In the words of Dr. Young, however, “we’re not there yet.”

The doctors want to put off the next open heart surgery for as long as they can. The larger the parts they can put into her during surgery #2, the longer we can stave off surgery #3. As for me, I’d like to get this annoying eating problem fixed before we even contemplate another surgery or procedure. I’m terribly afraid that if we don’t tackle the eating problem first, it will get worse after a surgery.

Friday’s Adventures

(Gratuitous picture of Miles Davis, to make Philippe smile)

Friday’s tests went well, at least from what Philippe would call an “operational” perspective. We probably won’t have results until early in the week.

Charlotte and I got to the hospital around 9:15 a.m. She usually naps at 9 a.m. and had fallen asleep in the car. I got lucky because she did not wake up when I transferred her to the stroller. It was cold and rainy so I draped a blanket over the stroller and she slept peacefully until the very moment that our escort from Nuclear Medicine came to get us in the reception area.

Nuclear Medicine: Like the last time we did the VQ or lung perfusion scan, I left the suite when the IV team started to set up Charlotte’s IV. She was screaming so loudly I had to go around to the elevators. I’m sure that at some point I’ll have to stay with her so that she doesn’t remember me as the mother who left for the painful things. But, right now I just cannot deal with blood related things. Poor baby. She screamed and screamed. They got the first vein, no problem, but it took a long time to calm her down. Not surprising–she had vomited up what I tried to pump at 5 a.m. for breakfast, she’d not eaten in +12 hours, she’d had “napus interruptus,” and she as being pricked with a needle. Mom’s shoulder did the trick for calming. Go figure.

Unlike last time, Charlotte did not calmly fall asleep strapped to the board. She cried and writhed. I had to pet her, talk to her console her, hold her head still, and sing to her for 75 minutes. I’ve got some pictures. They’re on film (!) so check back to this entry in a week or so for the images.

Daddy stopped by for a while after his dentist appointment. Charlotte acted very brave for him.

When that was over, we went to the Procedure Suite for the anesthesized echocardiogram: The people in the suite went on and on about how cute Charlotte is. She was absolutely charming for the hour that we waited. Despite hunger and fatigue, she cooed and played and smiled at anyone who smiled at her. For the first time, I wasn’t totally freaked when they took my baby to have anesthesia. Somehow, having the anesthesiologist carry the baby lovingly in her arms, rather than seeing her wheeled on a gurney/crib, was very comforting.

In about an hour Charlotte was back in the Procedure Suite for recovery. I walked in to get my phone and there she was. Screaming. Delirious. Typical emerging delirium from the type of anesthesia that she had. Philippe came to gather us and we sat with her for about 45 minutes until the gas wore off. She refused her bottle violently. The G-tube came in handy because we were able to put Pedialyte in her belly, determine that she could handle it, and get her discharged. She finally finished her whimpering and fell asleep when Daddy put her over his shoulder. Seriously, Daddy’s shoulder is magic.

We got home around 4 p.m., I think. Charlotte was doing well enough that we had a friend in to babysit so we could go to synagogue and then out for a much needed bottle of wine and some food.

Dr. Young was not in the hospital on Friday and she’s at a satellite clinic on Mondays, so we probably won’t have any results until Tuesday or so. Will update again then.

Comment va Charlotte?

Tres bien merci!
(Blogger won’t let me format accents.)

We had the helmet refitted for the second time today. Charlotte’s head grew 2mmm. Pat says that this rate of growth is right on track. She also believes, per her measurements and eyeballs, that Charlotte may get out of the helmet sooner than 4 months. We’ll keep going for refittings; 2 more weekly, then every 2nd week. We’ll visit Dr. Vicari mid-March for a new STARscan.

Mom’s favorite time of day?
The helmet-free hour. I especially like it when it coincides with mealtime. Seriously. Is this a shayna punim or what?

Cardiology Update & Milestone

Charlotte saw her cardiologist, Dr. Young, on Friday. As trips to the Cardiology clinic go, it was a good one. We arrive a few minutes late, but didn’t have to wait at all for Charlotte’s echocardiogram. The bummer was that Charlotte actually started eating her bottle just before they called us. Go figure.

Anyway, the echo took about 45 minutes. We kept Charlotte in her infant carrier and I tried to get her to continue with the bottle. Instead, she fixated on either 1) the echo screen and technician, causing her to writhe to her left or 2) Dora the Explorer (we learned about “sube” and “baje” the mountain with Linda the Llama. I like Dora!). When not fixing her gaze, the little munchkin squirmed.

Back in the exam room, we waited around a bit. Then Charlotte had a 10-point EKG. The technician kept losing waves. He’d say “I’ve lost a…” and I’d look at Charlotte to see her holding the lead in her hand and waving it around. Yep. She was disconnecting the test!

Toni, the APN, and Jackie, the clinic nurse, came in and did the regular things–checked Charlotte’s pulse-ox, took her temp, weighed and measured her.

Then we waited. And waited. It didn’t occur to me until later that the last time I waited forever for a doctor to read an ultrasound was the day we found out about Charlotte’s heart. Good thing–I would’ve panicked.

So…here’s what we learned:
— Charlotte is 29″ long!! She has officially graduated from her infant carrier and we’ve installed her big girl carseat. That’s pretty cool. (This is the milestone.)
— Charlotte weighs 7.135kilo. I have no idea how many pounds that is 🙂
–**The doctors (Young and Pophal, the interventionist cardiologist) could not get a complete read on the echo. Little Charlotte moved around so much that they were not able to get a reading on the pressures in her right pulmonary artery (the one that required angioplasty in September)

What next? Well…in order to get a reading, we’ll need to have an echocardiogram performed under anesthesia. While we’re at the hospital we’ll also do a lung profusion scan (see 9/28/05 entry, this is the VQ scan. I promise to take pictures this time.)

What does it mean? Right now, we’re asuming that we simply couldn’t get a picture because she was moving so much. In effect, the echo picked up no flow image in the RPA. Given that Charlotte is a lovely shade of pink (Dr. Pophal said so when he saw us in the parking lot!) and that she is generally happy and healthy in appearance, there is no reason to believe that we’ve got any kind of major arterial blockage. So, based on what our bare eyes can see, we’re assuming the echo will be fine.

Other measures were pretty normal, at least for Charlotte.

When? We’ll be at Children’s Memorial all day on Friday 2/3 for the two tests. Charlotte should not need to be admitted and we’ll be home that afternoon.

Sorry for the late post–We left just after the appointment last Friday to go on retreat with our synagogue. Adult Retreat+ Charlotte. It was a lot of fun. No connectivity up there or I would have blogged.