Charlotte's Journey Home

Just a Regular Kid, Sort Of

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Quick Update

This has been a rather hectic week for us, so I’ll keep this as brief as I can:

Occupational Therapy evaluation: We had our quarterly OT eval this week. Charlotte is still testing at her birth age (not adjusted for prematurity) so she still doesn’t need OT. We’ll continue to evaluate each quarter just to be sure.

Helmet: Charlotte is officially a STARband graduate! She no longer fits in her helmet (her noggin is 45 cm, in the 50th percentile) and is, therefore, done with the “evil beret.” Any ideas what I should do with it??

Cardiology: Charlotte saw Dr. Young today. Once again baby cried crazily during her echo so they couldn’t get a great read. Since all her other vitals seem to be steady, we’re scheduling a sedated echo and lung perfusion study for the end of July, to be followed by a clinic visit in August. No changes in medications.

Ear infections: We saw the pediatrician on Monday and the ear infections seem to be cleared up. We finished antibiotics today.

Eating: Basically, she’s not eating. Vomit volume is down, but frequency holds steady. We’re 100% transitioned to Pediasure (which insurance covers!). I’ll leave it at that.

Charlotte now weighs more than 18 pounds and is nearly 31″ long.

Did I mention that Charlotte is pulling up to standing on her own? She thinks it’s the neatest trick ever and does it whenever she can.

Well, we’re off to Belgium tomorrow so that Charlotte can meet her grandmother, aunt and the rest of her family.


Perhaps I Spoke Too Soon

This is the face of a kid enjoying peach yogurt. Yeah, you read that correctly.

Charlotte continues to render me speechless. And if you know me, that’s hard to do. (Sorry, Hal and Sue, had to make the joke before you did!)

She didn’t eat well for breakfast and lunch. Took nothing in the morning, a few spoonfuls of food and about an ounce of formula at lunch. I ended up skipping her mid-afternoon feed because I couldn’t get to the tube without waking her (I tried three times). And since she’d scuttled her morning nap, I wanted her to sleep.

Well…I don’t know what she dreamt about, but when she woke up, she ate about 1 ounce, maybe more, of yogurt and a third of a bottle of corn-chicken-squash puree. To her friend Will she says, “Thanks for the inspiration, buddy!”

“I did it. I stood up all by myself.”

dictated by
Charlotte, translated by Mom (Originally, “Da Da pfffffttttttttt da da


More Milestones

Guess what Charlotte was doing when I got her from her morning nap today? Sorry not to have a picture. It did not occur to me to take a camera to get her up.

She was standing up! Yep, standing up in her crib, banging on the edge, grinning from ear to ear. And, yes, I spent 40 minutes this afternoon lowering the crib mattress. Charlotte tried to help and played with her toys in her room.

On the ear and tummy front: She’s still sipping from a cup. She prefers to drink water rather than formula. And she much prefers to drink from my glass. Today she ate about 3 tablespoons of solid food at lunch. That was huge–she’d been on “strike” from solid food for a few weeks. She’s still fairly congested and the puke-o-meter is at 3 today. But she’s feeling better.

We visited our friend and neighbor Meg today. Charlotte’s Fairy godmother Colleen was there with her 3 beautiful girls who were playing with Meg’s daughter. Meg’s little guy is 6 months old. It was quite something for me to see a 6 month old down a 4 ounce bottle of food and a bowl of cereal in 20 minutes. Something to look forward to. I guess I’ve come a long way–3 months ago I would have left the house, sat on the curb and cried my eyes out. Thanks to Meg and Colleen for understanding how hard this all is and for making Charlotte and me feel pretty normal. And thanks to Will for letting Charlotte play with his toys.

Pictures soon, I hope.

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Wonder of Wonders & Ups ‘n Downs

Wonder of Wonders: Yesterday, Charlotte and I took a long walk. We ended up at Bobtail, a local coffee & ice cream shop. I succumbed to the root beer float and got a cup of water. Charlotte stared at the cup of water as if it were going to turn into a pretty bird. So, for giggles as Phil would say, I offered her a sip. And, she sipped. Yes, you read that correctly. Charlotte gleefully took about 10 sips of water from an open cup, getting soaked in the process. She’s sipped water from a cup, and formula, at every meal since then.
Today in physical therapy she actively pulled herself up to standing dozens of times. She’s really growing up.

Ups ‘n Downs: As far as Charlotte’s ear infections go: Yesterday was up. she napped beautifully and slept well through the night. She ate about one ounce at every meal, but we expect that she won’t eat when a) she’s congested and b) her little ears hurt. Today was down. She refused to take a nap this morning, whining and whimpering for some time. Finally, she slept from 11:30 am to 1:30 pm and never took an afternoon nap. She did finally eat something at dinner, just over 2 ounces. She fell asleep tonight around 6:30 pm but has just started fussing. I’m hoping she didn’t think she was going down for a nap. Fingers crossed.

So, we’re waiting for the ears to clear up to see if any of the changes we’ve made since CHOW will make a difference.


Another First

…double ear infections.

Last night was a mini-repeat of Sunday. Except, she eventually calmed herself and went to sleep. I didn’t realize until later that she had vomited and squirmed to the clean end of the crib. I changed her. She was so tired that she barely woke up.

Today, she was miserable on and off all day. We had to stop her OT evaluation midway because she cried and vomited hugely, then fell asleep in my lap. She attempted 3 naps, but slept less than 45 minutes each time. She woke up whimpering and crying. Poor little thing was so pathetic.

So, off we went to her 4 p.m. pediatrician appointment. She, of course, fell sound asleep in the stroller. The doctor took a hard-fought look in Charlotte’s ear and found double ear infections, pretty bad. It’s time for Charlotte’s first Amoxicillin. We’re also going to keep her on Motrin steadily for several days to help with her pain.

We also talked about Charlotte’s chronic congestion. Basically, congestion can exacerbate reflux and vice versa. Typically, our pediatric practice likes to avoid over-the-counter decongestants for the under-2 set because, according to the research and the docs’ experience, the drugs don’t work for this age group. But, we have to do something. Especially when she’s teething or has a cold, it’s really awful.

Then answer: Zyrtec. We picked up a one month supply. But, the pharmacist reminded me that our insurance doesn’t cover it. (I have to deal with this for myself because it’s the only allergy medicine I tolerate.) So, when we follow up next week we’ll get another option.

Anyway, the little kid has had her Motrin, Zyrtec and Amoxicillin and she’s upstairs sleeping. Finally. She’s snoring a bit. Whimpering every now and then. But, if she makes it past 9 p.m. I think we’ll be good for the night. I hope I’m not jinxing it.


There’s a First Time for Everything

We had an adventure last night. One we hope not to repeat too often. And, frankly, one we’re lucky and grateful to have not had previously.

Charlotte was congested, but sleeping soundly when I gave her medications and hooked up her night feed at 8:20 p.m. or so. Unfortunately, she woke up around 9 p.m. crying and screaming. She was inconsolable and after about 20 minutes or so had reflux/vomiting. Typically, Charlotte consoles easily after an episode like this and goes back to sleep fairly quickly. Last night, she was inconsolable for what seemed like hours. She had a low grade fever, too.

After what seemed like the longest 45 minutes ever (nearly 1.5 hours total of screaming–hers not ours) we called the pediatrician. She sent us to the ERA at 11 pooh to make sure there was no lung involvement. Charlotte was, of course, calm in the car.

The trace nurse was waiting for us. Charlotte started crying again the minute the nurse came close with a stethoscope. Again, she wouldn’t stop. She vomited again in the waiting room, though she had nothing left in her tummy. Once we were in an exam room, Charlotte was examined by a nurse, a resident and an attending physician. The doctors were Dr. Rosenbaum and Dr. Horowitz. It was Easter after all.

By 1 a.m., she was smiling through very tired eyes and struggling to stay awake.

Her lungs were clean according to x-ray. They gave her Motrin for her fever, told us to follow up with her pediatrician and sent us home. We all got to bed around 2 a.m.

Charlotte woke up around 5:30 a.m., ate a little bit, and went back to sleep until nearly 8:15 a.m.

She’s got a cold and the congestion is miserable, but was better for most of today. Of course, now it’s night and everyone’s cold is worse at night. Right now, she’s crying,whimperingg and breaking my heart. She’s been at it off and on for an hour, but unlike last night doesn’t sound likes she’s in pain. But, little Charlotte has been the self-consoling kind since she was 3 days old so this is very, very hard.

Motrin is taking forever to bring her fever (which spike a bit again just a bit ago) down.

We’ll follow up with her pediatrician tomorrow.

Just wanted to keep you up to date.

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CHOW Visit

Yesterday was the big day–the consultation with the Feeding Team at the GI Clinic at Children’s Hospital of Wisconsin (CHOW).

We left the house a little later than anticipated and hit more traffic than expect, so we very nearly missed the appointment. The clinic allows you to be no more than 20 minutes late. When I called from the road to let them know where we were, the nurse basically told me it was hopeless and suggested that we reschedule right then. I tried hard not to scream or cry. I said, I’ts 9:20, I have until 9:50 right? Okay then, let’s reschedule if I walk in after that. Well, we pulled into the construction site that is CHOW and Philippe dropped us off. I grabbed Charlotte and ran through two buildings, diaper bag flapping. At precisely 9:45, we walked into the clinic and said “We’re here!” Laura, Charlotte’s regular feeding therapist, joined us she’d been sitting there for 20 minutes or so.

If you know me, you know I hate to be late. This was a nerve-wracking start to our day. Charlotte, however, did enjoy the jog. She giggled the whole way.

So.. they got us settled in a room equipped with a high chair and a Tripp Trapp chair (what we use at home). Philippe made it in 10 minutes later–so if we’d all parked and walked, we would’ve been late! We were joined by Dr. Long, a behavioral psychologist, Midge Kirby, a nutritionist, Trina Gonzalez, an RN, and Dr. Joan Arvedson, the speech pathologist who literally wrote the book on infant eating challenges and swallow studies.

We spent at least a half an hour talking about Charlotte and discussing our goals. We decided that our primary goals were to get rid of the last feed, stop thickening her formula, and eventually get rid of the tube. Our team let us know that getting rid of the tube is not a practical goal at this time, so we decided to focus at the other two goals.

Then everyone except Philippe, Dr.Arvedson and I went into another room. While I fed Charlotte, they watched from behind a one-way mirror while ourlittle munchkin pulled most of her regular tricks. She took the bottle for a while, needed a toy to keep her hands busy while she sucked, took the bottle and then spit it back out, threw her toys, and refused solid food altogether. All the while giggling.

From the first hour, the main take away was to keep it positive. They suggested that we attempt oral feeding for only 15-20 minutes. If she’s not eating, we’re to start the tube feed then. If she’s eating, we can continue for a little while more. High chair time is not supposed to last for more than 30 minutes.

From there we (Charlotte, me, Philippe, and Laura) went down to an exam room where we met Dr. Ellen Blank, a GI doc. She asked a million more questions. Laura kept us honest and reminded us of some of the questions we wanted to ask.

Mainly, our concern is that when Charlotte vomits several hours after a feed, she’s still has a significant volume to expel. We’re also concerned about her chronic congestion. Of course, we’re concerned about the vomiting in general, but…

Dr. Blank and the rest of the team think that one of the reasons Charlotte isn’t getting hungry and can vomit so much is that we’re feeding her a very fat-heavy formula. Changing the formula and the number of calories per baby kilo that we feed her daily might help increase her appetite. Dr. Blank drove home the idea that Charlotte could have the G-tube for a very long time. She counseled that since Charlotte has a heart condition which causes her to work harder and burn more calories eating than regular kids. Given her need for further surgeries and the potential feeding setbacks surgery could represent, she explained, we can’t have getting rid of the G-tube as a goal.

From Dr. Blank, Phil and I took a lunch break and Laura headed back to Chicago to work her own clinic.

Dr. Blank sent us to Radiology for a lateral neck x-ray to rule out adenoid problems as a cause for congestion. Charlotte did not like this at all–she was on her back on a table, with her head strapped into some cushions. Poor baby was hungry (we had to make her wait for the swallow study) and tired and she just lost it. Philippe and I were cringing the whole time. As usual, the only way I could deal with it was to take a picture.

Then we met again with Dr.Arvedson, this time to have Charlotte do a video swallow study. If you recall, we had a bad study back in February: Charlotte was overtired and screaming and she aspirated. Dr. Arvedson stated immediately that she didn’t think the last swallow study was valid. That made me feel really good, because that’s what I thought, too.

Once again, Charlotte cooperated pretty well. We got about 2 good minutes of tape of her eating both thin and thick liquid. Dr. Arvedson declared Charlotte safe for thin liquids. She saw no more aspiration than any other person might occasionally have.

Before we left, they gave us an outline of a plan of action. We’ll get dictated notes and a full plan early next week. We’ll probably go back for follow up in a month or two.

So, what’s the plan?

We’ll transition to Pediasure starting immediately, with the hope of getting her to 100% Pediasure before we leave for Belgium (4/29). The good news is that Pediasure should be covered by insurance and available through our home health care service. Otherwise, it’s slightly more expensive than the special formula she’s been getting
We have stopped thickening her feeds. This allows Charlotte to get one swallow per suck, increasing her efficiency and hopefully allowing her to burn fewer calories
We’re on a new feeding schedule. Rather than 2 bedtime feeds (typically at 7:30 and 10:30 p.m.), I’m trying to feed her at about 7 a.m., 10 a.m., 2 p.m., and 5 p.m. and then supplementing once while she sleeps. This is tough as she naps from 9-11 a.m. and 2-4 p.m. Today I opted to make the 2 p.m. feed a tube feed during her nap. That worked quite well, so we’ll keep that up for a while. The 10 a.m. feed happened just after 11 a.m. today. We’ll just feed her whenever she gets up from that nap.

Charlotte had about 30 minutes nap in the morning and the afternoon yesterday, both times in the car. Despite no naps, she was an absolute angel all day, cooperative and sweet. She’s a bit sleepy today, but I’m amazed at how she just takes all this medical stuff in stride.

It was dinner time when we got home, but Charlotte needed to wiggle. So we went to the park…..

Just another fun day!