Tuesday, February 28, 2006

Just Wait 5 Minutes

this is an audio post - click to play

Over the nearly 17 years that I've lived in the Chicago area many of my friends and family have asked me how I could possibly deal with the legendary, frigid Chicago winters. I've always answered that winters here are not that much worse than where I grew up (New Jersey), went to school (Rhode Island) and worked (New York). The wind tunnels on an NYC avenue can be as brutal as the wind off our lovely lake, but without the spectacular view of frozen foam. The cold in Providence on a rainy fall day can cut to the bone. And New Jersey, well, I don't remember it being too cold, but I remember lots and lots of snow.

Really how we get through winters in Chicago is that we wait for days like tomorrow--after the coldest weekend of the winter (February 17-22, right when my mom, the ultimate 'fraid of frigid person was visiting) and then a week of 30 degree windy cold, tomorrow we get 47 degrees. By Thursday it will be back in the thirties, but we'll have had that one warming day.

As any Chicagoan will tell you, these balmy days in the middle of our winter remind us that winter doesn't last forever and that spring will come.

What does this have to do with Charlotte? Everything, actually. Yesterday, Charlotte had a very bad eating day. She refused the bottle for all but 2 ounces at lunch, ate no solid food, and had medium to horrible reflux episodes after each meal. At midnight, about 30 minutes after her last feed, she screamed and vomited. No sooner had we gotten her cleaned up than she screeched, a sound that let us know she was in terrible pain, and vomited again.

Today was our balmy day, at least 2/3 of it: at breakfast and at lunch Charlotte willingly, even lustily, ate more than 4 ounces. I pumped only about 2 ounces at each meal. She playfully ate a lot of her solid food, too. As Laura, her feeding therapist (who fed her breakfast today) noted, days like today remind us that Charlotte can and will eat. She even enjoys it. Once we're able to better control her reflux, winter will end.

And dinner, you ask? Well, she stubbornly refused her bottle, eating about 1 ounce. She ate a few bites of her lentils and rice. She played and laughed. And when I took her out of her chair to take her to bed, she screamed in pain and vomited so much that I thought she was going to start retching. Sorry to be so graphic, but it is a rather horrific, adrenaline-ized situation, especially because the little princess doesn't cry that much.

A few other updates of note:
--We have our date with Children's Hospital of Wisconsin. We'll be heading up there on April 13. I think I can hang in for 6 weeks. As long as she doesn't vomit on the flights to and from NJ.
--Laura swears that Charlotte made and "L" sound today. She is positive Charlotte was trying to say her name. I wouldn't be surprised.
--Charlotte started to get the hang of the sippee cup some more with Laura, but she still won't do it for me.

Friday, February 24, 2006

Look Out Kitty Cats....

Sara is teaching Charlotte how to crawl up stairs. (She's not even crawling yet, but we're working on stairs.)

p.s. No, we haven't changed Charlotte's name. She just lost her "C."

Thursday, February 23, 2006

One of Charlotte's Favorite Times of Day

Once a day, we remove Charlotte's helmet for an hour so that we can wash her head and scrub the helmet. Some days instead of a bath, Charlotte and I play "beauty parlor." I think she likes it. I definitely do!

p.s. I've cheated a bit here--Mom and Philippe took these pictures over the weekend.

Wednesday, February 22, 2006

GI Update

We saw Charlotte's GI doc, Dr. Sentongo, today. She weighed in at 16 lbs. If the scales from doc to doc are pretty even, that's up 3 oz. from her 9 month check up at the pediatrician last week. She definitely looks like she's gained some weight--her little cheeks are getting chubby.

We discussed at length our feeding routine (3 meals a day, always offering solids, I start pump about 20 mins. into meal and then lower dose as/if she takes formula; night feeds to catch up). He recommended that we do bolus night feeds for her b/c a) she seems to vomit more often with continuous and b) he wants her stomach to stretch/grow.

Other than that he was happy. He's getting her info together to send to the Feeding Clinic at Children's Hospital of Wisconsin (CHOW). He seemed concerned that they won't make the appt. til they have the records, so I think he'll have superRN Annie get right on it.

We also met with his dietician. She told me--revelation--that we can try to get our formula (NeoSure or Enfacare) covered by insurance. We're going to work on that ASAP! That stuff is pretty expensive. Apparently since it is specially formulated for preemies and she gets it via G-tube, it might be coverable.

And, I left with a prescription for the Zevex Infinity pump. It is much smaller than the pump we have. I've heard it's easier to use and more reliable. Apparently, if I invest in a larger version of my fabulous Skip*Hop diaper bag, the pump might fit in the bag. I can't wait to get that going and improve our quality of life.

Next GI appt. will depend on when we get scheduled with CHOW.

Tuesday, February 21, 2006

Sippee Cup!!!!!

Baby steps on the reflux front.

Over the weekend Charlotte showed off for my mother and took a sip or two from her sippee cup. She hasn't done it again, but it was great.

(This is what's known, Tracy & Lisa, as a "schmutzy punim.")

And, just yesterday Charlotte finally started really eating and munching on her Gerber "stars," little meltable solids kind of like Cheerios. She lunges for them like I lunge for Cheetos. It's amazing to watch. She'll refuse her bottle, push the spoon away from her mouth and grab the stars.

And, yesterday she also grasped, literally, the little "dipping stick" spoon-thing that our Speech Therapist gave us to try. She fed herself several bites of lentils before allowing me to feed her an entire 1/2 bottle of them!!!

And today? Well, she ate tons of stars (it takes 80 stars to make 25 calories, unfortunately.)

So, the bad news is it still sucks to feed her. The good news is, we're not dealing with complete oral aversions.

Friday, February 17, 2006

Mom's Favorite Time of Day

Favorite Time of Day #1

Favorite Time of Day #2

Note--the stuffed duck is never too far from Charlotte's side. We call this Everytime Duck. Not to be confused with Dinner Duck (Dining Duck) and Bath Duck.

Charlotte napped really well on this day (Friday, I think it was). Yes, she's got a towel placed on the crib under where we place her head. This is in case of sleep-time vomits. She mostly doesn't vomit in her sleep, but with the cold she's had since last week sleep-time vomit is a fact of life.

Wednesday, February 15, 2006

Detour and Today's Picture

Sitting here listening to Charlotte's Kangaroo pump on the monitor as it feeds her 80ml/hour for the next few hours. Hoping, praying that a) she doesn't come unplugged and b) she doesn't get congested and wake up and/or vomit.

Helmet refit today--no major growth. Our orthotist Pat is confident that Charlotte will be "discharged" from the helmet when we see Dr. Vicari in mid-March.

I'm wondering how Charlotte will feel when she can no longer sleep face down (the helmet gives enough room for her to sleep on her forehead without smashing her nose). I would love to get a photo of this, but don't want to wake her up.

Feeding the baby: I imagine frequently that my lovely, caring, wonderful readers (you) sometimes think all my ranting about feeding Charlotte is pure hyperbole. (I'm sure you don't, actually, but my mind wanders.) Some of you have seen her suck down an ounce and then refuse, pursed lips, head shaking, coy smile. Or you've seen her pitch a fit. Or you've had me cancel a date or be terribly late because feeding her is taking 2 hours. You may have seen her suck down her solid food and refuse the bottle. Most of you are lucky, you haven't seen her vomit or had her vomit on you.

Here's my main pain: Our lovely daughter has slept through the night since August, 12 hours every night. She only occasionally wakes up. In most ways, she is a totally normal, typically developing 9 month old. At this point, if it weren't for the eating issues, we would be living a regular life.

We, however, still live the life of parents of newborns--one of us is up until after midnight nearly every night to pump her feeds so that gets what she needs. During the day, I spend so much time feeding Charlotte that play time, PT exercises, outings, and fun just no longer exist. I'm embarrassed to take her out, to bring her to your homes, I'm envious watching your kids eat.

And yet, I know you all have some idea what we're going through (even if you don't know it)--you've all had a child with a cold or flu who wouldn't eat for several days. You know how hard it is. Now multiply that by months. Many of you have had kids who spit up a bit or who had some reflux; now multiply that by months, by 2-6 vomit incidents a day. Charlotte wore 10 outfits between Friday and Sunday. We won't talk about crib bedding changes, my clothing changes, vomit-ridden hair, how much laundry we do, etc. It's really not fun.

Sorry for my ranting. I'm thinking tonight of several new friends I've made through our feeding disorder detour on Charlotte's Journey. Two of them have websites I invite you to visit. They are extraordinary mothers, just like every one of my girlfriends.
--Darshani's daughter lives with severe GERD: http://www.reflux.darshani.com/
--Thida's son has a serious medical problem that has led to his eating issues: http://waterowl.livejournal.com/
--One, my local pal, Julie, is sitting at Children's tonight with her daughter Audrey who had a G-tube placed today.

They've all shared some wisdom with me. Essentially they've said the same thing, so I'll quote Darshani (I hope you don't mind) because she said it today:
Feeding issues are SO HARD. It is a basic instinct to want to feed your baby, and when you can't, you have to grieve for awhile.
Thida said something similar in a comment on this blog recently.

All this to say, thank you for bearing with us as we battle Charlotte's feeding problems. Please understand that if I don't pick up the phone or I'm just not myself, it has nothing to do with you. Lack of sleep and loss of stamina are simply taking their toll.

Tuesday, February 14, 2006

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.

Friday, February 10, 2006

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.

Wednesday, February 08, 2006

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, February 03, 2006

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.

Thursday, February 02, 2006

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?

Wednesday, February 01, 2006

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.