I wrote most of this post yesterday while Cassie was in surgery and finished it today. Thought I would update you all on Project Get-Cassie-Chunky, which has taken up even more of our mental energy over the last 10 months since she got her g-tube. It’s been quite a process, but the absolutely fantastic news is that since she got the g-tube, Cassie has gained 12 pounds! We are beyond thrilled. We still have a long way to go, but it is so encouraging. At her pre-op appointment on Monday, I got to see what a whole year’s increase looked like. She was weighed on the same scale as at last July’s spinal surgery pre-op appointment and at that time, she weighed 37.3 lbs. This week she weighed 49.8! It was the best feeling in the world.
It’s taken us a long time to get to this point and we have had a ton of help along the way. Ezra and I resisted getting a g-tube for Cassie for so long, so first we had to have several doctors tell us that we should do it. Then we had one doctor, the GI doctor we saw while at Hopkins after Cassie’s surgery last summer, tell us it was imperative and that Cassie had the lowest BMI of any patient he’d ever seen. That scared the bejesus out of me, but when I thought about it, it made sense as I don’t know how a person could get any skinnier than Cassie was at that stage. In any case, he convinced us it was time. Cassie’s GI doctor near us, Dr. Verga, then prepped us for the procedure, which we did in September and which I blogged about so I won’t bore you with the details. Dr. Verga had told us that she’d never had a parent who regretted getting a g-tube for their child and that most only wished they’d done it sooner. I am now firmly in that camp.
We started out with very small g-tube feedings and increased them gradually. Cassie gained a bit and we were told that the ultimate goal was to get 2100 calories into her per day as that’s what she would need to catch up to what her weight should be. This was a very intimidating number as Cassie was getting around 1000 calories per day at the time, so doubling that seemed impossible.
After living with her g-tube for a little while, Cassie decided it needed a name. Taking her cue from a close friend with Marfan who has a back brace (or “vest” in medical speak) who named her brace “Steve” since it has all the same letters contained in “vest,” Cassie named her g-tube Freddy since it has most of the same letters as “feed.” Freddy is now a noun and a verb in our house, as in: “Freddy is leaking,” or “I’m hungry. Can you please Freddy me?” Nice to make it feel more like a friend and less like a medicalization of her life.
My entrepreneurs earlier this summer
In the meantime, I was talking to my therapist a lot about food in our house and how toxic it feels to me. I’m super conscious of how talking about food can affect the way our girls feel about it and really don’t want to damage the relationship either one of them has with eating. It’s really hard having one kid who needs to gain significant weight and another who should stay just the way she is and having different rules about who can eat what. “Ice cream for breakfast, Cass? Sure! P, how about some cereal?” just doesn’t cut it. I was tripping all over myself to say and do the right thing all the time and was looking for advice on how to handle the way food is discussed in our family. My therapist suggested that I see a nutritionist/therapist named Hien who specializes in eating disorders. (No one was worried that either of my girls has an eating disorder. The idea is that Hien is well-versed in talking about how to talk about food.)
Hien has been a total lifesaver. We had several appointments where we talked about my girls and how we handled meals and their different appetites and food interests and needs. Then winter hit along with a gazillion snow days and child illnesses for both Hien and me, and we didn’t see each other for a bit. By the time we got back on track in April, Cassie’s weight had stalled out at 42 lbs. We could not get her above that number for the life of us. Hien had me face the tough reality that Cassie was malnourished and physically anorexic. That was so hard to hear even though I knew it in my heart of hearts. I think there’s no greater instinct as a parent than the one to feed your child. It starts from the second they are born with breast/bottle feeding and the focus on growth charts and percentiles, but it’s more than what happens at check-ups. Besides affection, it always felt to me like food was how you nourished your child and made sure they were healthy and growing. I’m truly not beating myself up because we had a lot working against us, but it is really hard to hear that your child is malnourished and not feel like you’ve failed at something major. I knew before having kids that there were aspects of parenting that would be hard for me, but I never thought that feeding my child would be so difficult or so mentally and physically draining. Eating is supposed to be fun, right?
Hien specializes in helping people with anorexia regain their natural weights, and plays the role of a nutritionist as well as a therapist. Hien the nutritionist leapt into action when we realized that Cassie had stalled at 42 lbs. She explained that Cassie needed to be on a very precise feeding regimen involving being weighed daily and taking in a certain number of calories every day that would go up by about 200 calories per day whenever her weight stalled for more than a few days or decreased at all. When you’ve been malnourished and then start taking in more calories, your metabolism goes into overdrive so if you don’t add calories when you’ve plateaued, your faster metabolism will make you start to lose weight at the same caloric intake. This is why it’s so important to be weighed (at dry weight, i.e., naked and very first thing when you get out of bed) daily. I email Hien every morning with Cassie’s weight and how many calories she consumed in the 24-hour period prior and we make adjustments as we go.
To throw a wrench into everything because we just needed one more hurdle, Cassie got a palette expander in early June. She started being fitted for it in April before we knew we were putting Project Chunky into full gear. Cassie’s teeth are a mess and the palette expander, for those not familiar, is a piece of metal that attaches to the upper back teeth and has bars that go along the inside of one’s gums and gets cranked twice/day for two weeks so that the palette is expanded. It then gets locked into place and stays for four months so that the palette can set in its new size. This is to make more room for the teeth to be in proper position. Penelope had one last year and it worked beautifully and it didn’t bother her too much after the first few days. Cassie, however, hates her palette expander. (I don’t blame her — it looks super uncomfortable.) She is very sensitive to changes in her body and she said that her new bite was making it hard to chew. She also really can’t stand getting food caught in her expander. She started eating less than usual, not the direction we needed to go in. I honestly don’t know what we would have done without Freddy. Some people say that when a child is hungry enough, they will eat. To those people I say, you do not know my child.
In some ways, the palette expander has not been such a bad thing because it’s been easier to get the needed calories into Cassie using Freddy. She doesn’t eat that much in one go when she’s eating real food and with Freddy, I can get 250-350 calories into her fairly easily. And it’s so much easier to count how many calories are going in. I just don’t want her to become so enamored of using Freddy that she doesn’t want to eat normally after her expander comes off. So far, this doesn’t seem to be the case. She is still interested in food and has been trying to eat more and more. I still don’t think she will eat regularly until her expander comes off in October, but in the meantime, she is gaining weight. She is actually back on the growth chart for weight for the first time in years! Of course she’s at the top of the chart for height so we still have a ways to go in terms of weight-for-height charts, but some of her clothes no longer fit, which is very exciting. And as my friend Christine said after seeing her at the pool a few days ago, her little tush is actually filling out her bathing suit for the first time ever! Even Cassie notices that her thighs are getting bigger.
Hien has explained to me that some of the symptoms of malnourishment are lack of appetite and early satiety and that both of these should get better as she gets closer to her natural weight. We still have a ways to go before we are at that weight (and Hien said she will not feel her work is done until Cassie is maintaining her natural weight without help from Freddy), but after seeing her go from 43 to 49 lbs on our home scale since Memorial Day, I no longer feel as though this is insurmountable.
This was a lengthy post (thanks for sticking with me!), but it’s been a very long road to this point and I’ve discussed her weight woes so much in the past that I wanted to update you all with this happy news. We are not out of the woods, but feel much more hopeful about her weight, which is very welcome after being really scared and worried about it for a long time.