I was more likely to play school than to play house. Had I imagined motherhood, it would not have begun with cardiac surgery. Or with wires, tubes, a ventilator, medicines, oxygen, daily x-rays, and ultrasounds. I would not have been on first-name basis with my daughter’s cardiologist and her first babysitter would not have been our favorite PICU nurse. My imagined life with a newborn would not have included pumping breast milk eight times a day while a machine fed my baby. Or sneaking into her room to give her medicine and food via a tube while she slept through the night. Or fighting with a one-year-old get her to drink half an ounce of milk. Most of all, however, I think I could never have imagined that it would take nearly a year for me to fall in love my child. Or, that once I did that love would be the fiercest and most complex emotion I’ve ever felt.Continue reading
Several weeks ago Philippe and I were invited to friends’ for dinner. I volunteered Philippe to make his famous chocolate mousse for dessert. Charlotte was delighted to help. I think the pictures speak for themselves.
Last night Charlotte’s good buddy Taylor came over for a playdate and dinner (with her parents, of course). She quickly declared my chicken chili delicious (it was) and ate about 3 bites.
Then, Taylor’s dad was trying to get Taylor to eat a bit more. [Aside: This always makes us feel good because it means we’re not the only ones who have to push our kid to eat.] So, I said, “Hey Charlotte, show Taylor how you can take a big bite of soup.” She said, “Sure. It’s yummy.” And, damned if she didn’t shovel another spoonful, chock full of chicken and veggies, into her mouth.
In the end, Andy definitely got Taylor to eat a lot more than Charlotte, but I was stunned.
Charlotte and I visited Sara, her dietician, at Children’s Hospital of Wisconsin today. Charlotte’s “official” CHOW weight was 15.3 k, or precisely what it was back in June. While her vertical growth (she’s up to 3 feet 5.75 inches) is steady, Sara is a tad concerned that her weight gain is flat. Charlotte has gone from 94% ideal weight for height to 90% ideal weight for height.
Charlotte did have 3 ear infections in about 6 weeks (August through September), followed by a 24-hour “summer fever,” all of which dampened her appetite in the past two months.
I’m hoping that now that she’s healthy (save for a sniffly nose), she’ll start chowing down again. But, we’re back to needing to be vigilant about caloric intake, adding calories where we can, and worrying about food and weight.
On the bright side:
- We don’t have to worry about reflux. Even with her last ear infection and her current runny nose, we’ve not seen any gagging or vomiting.
- She is in the 97th percentile for height for her age (not quite 3 1/2). To put it another way, she’s average for a 4 year old (and in our experience, she’s as tall or taller than most 4 year olds we know!).
- Sara loved the broad range of foods Charlotte will try or will eat.
I finally had the home healthcare company retrieve the Zevex pump and all of its accessories. We’ll miss our friendly delivery man, Vince J., but we won’t miss the pump.
Charlotte’s eating is very inconsistent, which I suppose is pretty “regular” for a toddler. When she eats well, however, her volume is stil pretty low for a kid her age.
We did have a major meal on Friday night–Charlotte ate 5 (!!!!) raviolis, all by herself. While volume is important, we know we can make up for calories with our high calorie purees and dessert (the kid is definitely ours–she loves dessert). So, we’re really working on self-feeding as that will be the key to success in school.
Well, it has nothing to do with the 2 1/2 hour drive to Milwaukee or the nearly 3 1/2 hours it took us to get home.
Here are the basic stats of our visit.
Weight: 33.75 lbs (15.3 k)
Height: 40.5 inches (102.2 cms)
Yes, she is off the charts for height. In fact, she hits the charts at average for a child of 4 years and 3 months.
“Bye bye, tummy tube.”
Yes, in that little specimen cup, Charlotte is holding her MICKey button, the last one she had in her tummy. Right now she sports a piece of gauze over the stoma. The stoma (or hole) should close up within 2 weeks.
We’ve also stopped the Pepcid as Charlotte’s reflux seems to be resolved. Further, we’ll be dropping one can of Pediasure a day, substituting it with whole milk, with the goal of getting her to whole milk with no additives by the time she starts preschool in September.
We’ll follow up with her surgeon in Chicago if the hole doesn’t close itself. After that we’ll go to Wisconsin in September to consult with Charlotte’s dietitian, Sara. (Every toddler should have their own dietitian!). In December, we’ll see the whole team.
As you might imagine (or not if you’re my brother!), I really have no words for the emotions I’m feeling right now. The champagne is in the fridge. It’s a good bottle, Veuve Cliquot, that Philippe’s EVP gave him at holiday time. We were saving it for a special occasion and we can’t think of anything more special than this.
The best day ever. Ever. Ever. Or, at least in the history of feeding Charlotte.
Charlotte continues, seemingly, to lose ground on the eating front. She took only 1-2 ounces from each of 3 6-ounce bottles today. Just a few weeks ago she was finishing at least one bottle a day and taking 4 to 5 ounces from the others. Since yesterday she’s been refusing or gagging on her solid food, too.
I feared that she would be come 100% tube-dependent.
I have officially lost count of the number of days without vomit. We’ve definitely broken Charlotte’s world record. We’re not counting little bitty urps (wet burps, really).
Yesterday we did not use the feeding tube at all. If I remember correctly, we didn’t use it on Saturday either. And I cannot remember the last time we took the Zevex pump out of the cabinet.
Dare I say that the reflux is behind us?