Report from home

Things are going well at home since we arrived on Saturday night. The best part by far is this:

Sister reunion

Sister reunion

It was so great to have all day Sunday at home as a family before Ezra went back to work on Monday and Penelope started another week of day camp. We did a million loads of laundry and went through stacks of mail and all those things you do when you’ve been away for a while. And of course there’s been lots and lots of couch time. Since the patient-chooses-the-show rule is in full effect, there has been a lot (A LOT) of “My Little Pony,” and if I never hear that theme song again, it will be too soon. Grateful that Cassie also likes “Modern Family” and our family favorite “American Ninja Warrior” for an occasional break from Pinkie Pie and Rainbow Dash.

Sunday also brought us a very welcome visit from Aunt Abby (who brought P back to us late on Saturday night along with enough dinners for the week — she keeps coming up with new ways to be not only incredibly fun but also incredibly thoughtful), Nano, and Bill. So wonderful seeing them. My parents still love us, too, but my mom is recovering from a hip replacement and subsequent hip dislocation so we are making do with FaceTime.

Being home has worked its magic on Cassie a bit as she’s only thrown up once since we’ve been here and has gotten up a ton more than in the hospital. Visiting friends have also done a lot to motivate her to get off the couch, even if it’s only for a walk to the front door. Unfortunately, a walk just to the front door is enough to wipe her out so we have a lot of work to do on her stamina. It’s amazing how quickly a person (and particularly, I’m told, a person with Marfan syndrome) can get deconditioned. I told Cassie I want her to walk to the front door once every hour, so we will see how that goes.

I weighed Cassie yesterday, and she lost 3-4 lbs. Not too terrible. Once she is back to her pre-surgery caloric intake (which I’m guessing will take another week or so), it should take about 5 weeks to gain that back. So thankful she had put on that weight before surgery so she had that little cushion. She’s eaten some real food (taco meat, milk, and her beloved miso soup and sushi rice) since we’ve been home, which is encouraging.

Another great thing about being back around family is that I get to leave the house! Nancy will be here shortly so that I can do a few errands and get a pedicure. I promised Cassie she could come with me as soon as she is feeling better.

Thank you so much for the caring, thoughtful messages and offers of help. As always, we are so very grateful for all of the love and support coming our way.


Home home homity home home

We are home! Busy day. Will post more tomorrow, but for now, wanted to share our happy news.

Still making progress, but it’s not speedy

Cassie had a good night last night. She was off oxygen all night! As of now, she’s been off over 36 hours, so that’s huge. She was on a continuous feed overnight last night and most of today and has not thrown up or leaked out of Freddy. Her formula is now 100% Pediasure. So we are good on feeds and on oxygen. The only thing really keeping us here now is her lack of significant movement.

We elevated the head of her bed gradually all morning until we got to my favorite part of the day:

Snuggle bunnies

Snuggle bunnies

Cassie and I are pretty much constantly snuggling on a normal day, so not to have cuddled her for a week was really hard for me. Unfortunately, she could only spend about five minutes on my lap before she wanted to get back in bed. PT was supposed to come see Cassie today but never made it. She has to do spinal x-rays before we leave which she needs to stand for, so we need help from PT to make that happen.

Ezra and I had a tough love talk with Cassie tonight where we told her that as hard as it is, in order to go home she’s going to need to push through the headache pain and her fear of throwing up so that she can sit up and walk. We think her headaches are coming on because she’s been flat in bed for a week and that they won’t get better until she makes herself sit up, stand up, and walk enough so that moving around feels normal again. We really don’t want her to get as deconditioned as she was after her initial spinal surgery two years ago which was so hard to bounce back from. Last night and this morning we were counting on being able to go home tomorrow, but as the day went on, it started to become more clear that Sunday is more likely.

Meanwhile Cassie is cracking up the staff here (unless she’s breaking their hearts with how badly she wants to go home). Penelope is with Ezra’s family and we FaceTimed with them tonight:


Ezra is with Cassie tonight. I am taking a night off from hospital duty and am going to sign off now so I can go to sleep!


Today was a good day, the best we’ve had so far. It never fails to amaze me how quickly things can change in the hospital — in either direction. 

All of the three big possibilities for why Cassie was so nauseated and had headaches yesterday seem not to be the cause. The blood tests showed that her pancreatic numbers are slightly elevated but not to pancreatitis levels. The abdominal X-ray did not show an ileus. And the thinking is that she most likely does not have a CSF leak because her head hurts lying down as well as sitting up. Usually if you have a CSF leak, your head pounds the second you sit up and then is totally fine as soon as you lie back down and that’s not what this is like for Cass. So the good news is that none of those things seems to be going on (but we need to watch her for a CSF leak after we get home). The bad news is that we still don’t know why she’s been so nauseated. It may just be her stomach needing time to heal. I think that it may be reflux because when she says her chest hurts, she points to her sternum and she suffered badly from reflux after her first spinal surgery. So I asked for Prilosec to be added to her medication regimen, which is already very involved. It always amazes me how such a small person can have so much medication in her body. She’s on Zofran and Phenergan for nausea, Zantac (switched to Prilosec) for reflux, probiotics, carafate to coat her stomach, and her regular heart meds. We’ve recently gotten rid of her pain button, Valium, Benadryl, and Tylenol.

This morning Cassie woke up super chatty at 5:00. She had basically slept since 4pm yesterday (with a break from 7:30 – 9:00) so she was quite well-rested. The countdown to my coffee was looooong. But she’d had a good night so I’d gotten some sleep and was so happy to see my Turtle feeling more like herself. She mentioned how much she is looking forward to the Marfan conference in a couple of weeks, which kind of broke my heart because I’m not sure she’ll be well enough to go. The conference happens every summer and changes location. This year it’s in Chicago, and since Cassie was 5, we’ve been going every year. Both of our girls love it. The staff takes the kids on field trips and they have such a great time with new and old friends who have Marfan and their siblings who don’t. We are supposed to leave in two weeks, so we’ll see if Cassie is ready by then. When she was talking about it, she hit the nail on the head for what makes it so special: “Mommy, you know how people sometimes stare at me when I’m in my wheelchair or when I used to wear ankle braces? Well, at the conference, no one stares at me because I’m not so different.” Exactly.

Cassie did well enough overnight that we took her off oxygen this morning (with thanks to the blow glove pictured here

Cassie working out her lungs with her blow glove

Cassie working out her lungs with her blow glove

as well as a respiratory therapist and other breathing devices) and she stayed off it all day, even during her 2-hour nap (sleep is when people usually dip and might require oxygen). We had a long discussion again with the hospitalist about our nutrition plan. We decided to do a slow feed through Freddy of half-Pedialyte/half-Pediasure and see how it went. We also decided to keep her bed flat all day since we weren’t sure if raising it might have contributed to her vomiting. 

In any case, whether it’s due to meds, time, or staying flat, she’s kept everything down all day, so we are thrilled! She is up to 60 ml/hr of feed and we will keep her on that all night. 60 mls is 2 ounces, so we are hoping she can handle that volume per hour all night. Then tomorrow we will try to elevate her again. Assuming that goes well, we will come home on Saturday!

We made other progress, too. She got one IV out a couple of days ago and the other one came out today, so she’s thrilled about that. (“I’m free!”) The second IV came out today because it wasn’t working well anymore and was painful but instead of getting another IV, I asked if we could switch her IV meds to oral meds that we will do through Freddy. Hoping she won’t need more IV fluids so that we can keep her IV-free. She got to put on her own pajamas now that fewer tubes and wires are in the way.

She’s been much more like herself today, chatting with the doctors (telling them all about the TV show “Cupcake Wars”), playing on her iPod, and being silly with Mommy and Daddy. I was ready to do the desperate-for-nutrition plan of TPN through the PICC line if necessary, but will be so happy if we get through tonight with her current feeding plan as then we won’t have to do TPN and can go home and then gradually get her back to where we were feeding-wise. 

Thank you so much for all of the support, good thoughts, and love. Hearing from you really makes our days so much better and we feel so connected to you all. We have the best friends! And speaking of good friends, Penelope is having a fantastic week with the Prestons. In fact, I’m not sure she’s going to want to move back in with us when we get home. Christine and Michael have taken Penelope in like it’s nothing, and while she is a pretty easy kid, it’s been a week today that they’ve had her and they have been incredible. It’s such a gift that we can relax knowing P is happy and in such great hands. Oh, and they are taking care of our goldfish, too.

So that is the report from today. We are in a much better place, and we are cautiously optimistic that we will stay here this time.

Riding the roller coaster

The last 24 hours have been exhausting and I’m about to go to bed but wanted to send out a quick update. Basically Cassie has been miserable ever since I hit “Publish” on my last post. She started vomiting last night and has not been able to keep anything down — and all she’s getting is Pedialyte going extremely slowly through Freddy. She was up every hour last night, and all I can say about that is, we know she’s not constipated. Today Louise was our nurse again and came in ready to get Cassie out of bed and eating so we could try to go home tomorrow. Cassie kept vomiting and had a headache and couldn’t tolerate being in an upright position for long, not even for her beloved hospital bingo game. (This is a game the kids can play from their hospital beds by watching the closed circuit TV and filling out their bingo cards when the child life specialist calls out “B – syringe” or “G – stethoscope.” You then call into bingo headquarters to pick out a prize. It’s been a highlight of all of Cassie’s surgeries at Hopkins.) She had really been looking forward to it, but she was so miserable that she couldn’t really play. Penelope has heard all about bingo so I texted her a photo of Cassie’s bingo card and then set up FaceTime on my phone so she could watch the TV and keep track of bingo for us. Ah, technology. It paid off as P helped us win Cassie a stuffed Pug she has named Oreo:


After bingo, the hospitalist, who I like a lot, came to talk to us about Cassie’s vomiting and nausea and headaches. I was worried about a CSF (cerebral spinal fluid) leak which can happen after spinal surgery and is a big risk for people with Marfan. We know she had a leak during surgery that Dr. Sponseller closed, but I was worried that it leaked through the fix. The hospitalist said that was possible. She also thought it could be the ileus we’d already discussed and ordered an abdominal x-ray (which we have since been told was normal). She also thinks pancreatitis (inflammation of the pancreas) is a possibility as it can happen after surgery so labs were drawn tonight and we should know the results fairly soon. She said that the ileus and pancreatitis would both require belly rest, but it’s very tough to think about that as Cassie has not had any nutrition since last Thursday, the night before surgery. She said that if we can’t get any Pediasure into Cassie tomorrow, we will have to consider doing TPN, which is intravenous feeding, perhaps through a PICC line. I’m not happy about TPN and definitely not happy about doing it through a PICC line. She then said that she thinks we will be here at least through the weekend. I try to keep my expectations in check when thinking about how long we will be in the hospital after surgery, but even trying to keep expectations low, I thought we’d go home Friday. So being here through the weekend and potentially into next week really hit me hard (both because it’s so hard to think of Cassie being unwell enough to need to stay that long and because I can’t go that long without seeing Penelope) and I started to cry. Even though I am a total crier, this is the first time I have done it in front of a doctor. She was very comforting and said she will be checking Cassie’s x-ray and labs from home tonight to see if she can figure out what’s going on. And it may just be that Cassie’s belly is still recovering from all of the anesthesia and meds, but we can’t go home until she can keep something down. The good news is that it seems the collapse in her lung is getting better.

By chance a wonderful friend of ours whose daughter also has Marfan is in Baltimore for a couple of days, so she came to see us tonight. So wonderful to see her, and I especially loved how she didn’t bat an eye when the patient vomited in her presence. I also loved how the bubble gum machine-shaped pillow she brought for Cass put a smile on her face for the first time today.

Louise is gone until Monday, and I hope we don’t see her because I hope we will be home by then, but I miss her already. Her last actions before leaving tonight were handpicking our nurse for the next shift (“I got you the best one”) and moving us to a better room. You can see why I love her.

Blood is magical and so is Louise

Louise first. She has been our nurse yesterday and today, and she is just one of those people who gets stuff done. She is so laser-focused on Cassie’s needs and is gentle but firm about getting Cassie to do what she needs to do. All of the nurses on this service are fantastic, but Louise is the one I’d like to have move in with us. She took care of Cassie when we were here after her initial spinal surgery two years ago, and she made an impression then, too. After a decent day when I felt like Cassie was improving, she had a particularly horrible day in the middle of our stay that felt like a major step back and I was really upset and worried about it. Louise came in fresh the next day and heard about the day before and looked at the three of us and said, “I’m going to make sure she has a better day today.” She did just that and I haven’t forgotten it so when she came into our room yesterday morning, I just thought, Ah, Louise is here.

Cassie blowing bubbles with Louise

Cassie blowing bubbles with Louise

Now the blood. Holy moly, that stuff works. It’s like Freddy — not only do I not regret it, I wish we’d done it sooner. I was ready to do it yesterday but I guess we were waiting for the ortho team to be on board. In any case, Cassie got a blood transfusion today and then had a bit of a fit (apparently she thinks it’s high time we go home) and then passed out. When she woke up, she was our Cassafrass again! Where she had been so angry and cranky (understandably) and not wanting to talk or have me touch her very much, she was instead chatty and silly. She brought the head of her bed up without being asked. She has been blowing bubbles and into her blow glove to try to get her left lung to inflate. (Chest x-ray at bedside today confirmed that her lung collapsed a bit, which always happens to her after surgery.) She’s off all pain meds except Tylenol and a button she can press for a quick dose. The goal for tonight is to have her sit up more. We’ve started giving her Pedialyte (like Gatorade for kids) through Freddy at a super slow rate. Tomorrow we will start her on Pediasure and the goal will be to walk. Hoping for a Thursday discharge, though we’ll take Friday, too.

Had a pick-me-up today with a visit from my dear friend Amanda who lives in DC. So wonderful to see her. I also got to meet in person the mom of a boy with Marfan who I’ve only met on Facebook and is here for her son’s surgery with Dr. Sponseller tomorrow. Meeting another Marf mom is always so exciting — there’s so much to bond over and learn from each other.

Cassie is FaceTiming with Penelope as I type and I just heard P say, “I see you are more the perky little Turtle.” Cassie’s improved health is clear to all! Fingers crossed things stay this way.

Better day today

Thank you so much for all the good thoughts and concern coming our way today. It is so very appreciated and makes us feel less alone in all of this. We are so very lucky to have such a wonderful community of people who care about us.

I’m going to try to keep this short. Overall, today was definitely a better day than yesterday. Dr. Sponseller said that Cassie’s nausea could be due to a spinal fluid leak or to the pain meds and he thought it was best for her to lie flat for the morning. Cassie slept until noon, so that wasn’t hard to comply with. Cassie was having a really tough morning just feeling miserable. She didn’t want me to touch her or talk with her, which was killing me. She is a very snuggly cuddle bunny 99% of the time, so this was really unusual behavior and I knew it meant she really felt terrible. So hard to sit through.

The hospitalist, who we’ve met after previous surgeries, came by and she examined Cass. She said that she didn’t hear any belly sounds and that meant she has an ileus, or blockage, in her stomach. She thought it was due to the narcotics “shocking” Cassie’s belly into not working and moving things through it. She said the best thing to do was rest her stomach (not eat) and try to wean off pain meds. We’d already stopped the continuous IV pain meds so that was taken care of. She was advocating getting a blood transfusion and we might do that tomorrow if Cassie’s labs aren’t better.

Cassie’s lungs are acting up a bit, which is common for her after surgery, but it’s exacerbated by the fact that she hasn’t been able to get out of bed yet and move around. So we did the blow glove which is an examination glove taped to the end of a big syringe. You blow into the syringe to inflate the glove. Gets your lungs pumping. We also had her lie on her side for a bit so she wasn’t on her back all day. She actually watched My Little Pony on our iPad while she was on her side which was the first TV she’s watched since surgery. Being interested in TV is another good sign that she’s feeling a bit better.

One of today’s highlights was when Cassie asked to watch some videos that our friends Toby and Natey, who are like cousins to Cassie and Penelope, made for her to cheer her up. She was smiling and even giggling while watching these very silly skits they performed for Cassie and it was such a relief to see her laughing. We also had a visit from our friend Shari’s dad Mickey who is a doctor in Baltimore and has visited us during everyone one of Cassie’s surgeries at Hopkins. It’s always so comforting to see him. Cass was also her normal, happy self when FaceTiming with Penelope and our friends, Delia, Ben, and Sarah Kate, tonight before bed. They were texting each other emojis and making up stories about them. I don’t know how people got through being in the hospital before all of these devices came into our lives.

The rest of the day was fairly uneventful. There are signs that things are improving belly-wise and we are hoping to start feeding her tomorrow and having her try sitting up again. Will let you know how it goes.

Post-op day 2 is always the worst

Post-op day 2 is almost always the worst. Day 1, you’re still riding high on anesthesia, but day 2, the anesthesia starts to leave your body and the pain meds can start to make things difficult tummy-wise. It’s 5:30am on Monday, and we’ve had too much going on in the last 24+ hours for me to write.

On Saturday night, I went to sleep nice and early (9:45) and except for an hour at midnight for meds and vitals, slept until 3am when Cassie woke me up because Freddy was leaking. When I checked Freddy, I saw that he (Cassie insists I call Freddy “he” and not “it”) was not just leaking, but gushing. Stomach contents can leak a bit around the edges of the tube and that happens from time to time, especially if I feed her too much too fast. This was different. I called for our nurse and we thought that we should check the water in the balloon that is holding the tube inside Cassie. When you put in a g-tube button, there’s a sort of stick that goes through the stoma and then you use a syringe to push water into a balloon that’s on the underside of the button in the stomach. This is what keeps it in place. You have to change out the button every 4-6 months and parents do that at home, so we always have a back-up. I brought it with us because I was told that hospitals don’t keep buttons in stock. Seems crazy but I think it’s because there are different brands of buttons and so many different sizes that it would be difficult to keep every possible variation in the hospital.

Anyway, our nurse (who’s been our nurse the past three nights and is awesome) and I checked the water in the balloon and there was the proper amount. But while I deflated the balloon, stomach acid just came pouring out of Cassie. I filled the balloon back up and we decided that we should try changing the button in case that was the problem. We changed it, and it seemed a little tighter and better, but it was still leaking. I’d fed Cassie a small amount through her tube a few hours earlier and was getting stressed that she had no food in her. She also has a rash around her g-tube site from all of the stomach acid.

We are thinking that this might be happening because her stoma got bigger when her body was stretched during the lengthening part of her surgery. It’s the only thing that makes sense to me right now. GI will come see us later today, I’m hoping first thing. Part of me likes being in the hospital on the weekend because it’s quieter, but a lot of medical staff aren’t here and we have to wait unless it’s an emergency.

Cassie’s surgeon came in around 6:30 and removed her back drain. He did not see any signs of spinal fluid leak, so he gave her the go-ahead to sit up to 45 degrees and if that felt okay for a few hours, she could sit all the way up. The highest she made it all day yesterday was about 20 degrees. She said she felt nauseous at various points as well as having a burning in her chest. She’s already on IV Zofran for nausea and we’re adding Zantac for reflux and we are also trying to stay ahead of constipation.

We slept a bit more and then Ezra came with my much-needed coffee. It feels a little pathetic how eagerly I take the cup from him, but every morning when I drink my coffee, I feel like I’m doing the airplane thing of putting on my own oxygen mask before the kids’ — taking care of yourself so you are better able to take care of others. So the takeaway, I guess, is that coffee is my oxygen.

The pediatric hospitalist came in the morning, too. He said that Cassie is right on the cusp of needing a blood transfusion. Her hemoglobin is 7 and any lower than that is when they typically do it. Dr. Sponseller doesn’t like to do blood transfusions (because kids dip after surgery but usually rebound on their own) but others think it can help a lot. We don’t want to do it but don’t want to do anything stupid either. That was not brought up again for the rest of the day but I suspect it will come up this morning. Hate that it involves a blood draw. She’s also had a fever, which is common post-op. She always has either an ice pack or a heat pack or both somewhere on her body. We go through these like nobody’s business.

We FaceTimed with Penelope (who had a great day at the beach with the Prestons) and Cassie was pretty talkative. She slept a lot in the morning and I fed her some Pediasure through Freddy. Around noon, she threw up. It was the first time she’d vomited since surgery and was our record for longest period post-op without throwing up (46 hours). Unfortunately we weren’t quite prepared and it got everywhere requiring a bed change (which is hard because we can’t take her off the bed yet) and a shower cap with shampoo built into it. I have to say her hair looked great after the fancy shower cap. She slept a while after that and then came the best part of our day by far: A visit from Uncle Ray (Ezra’s brother) who lives in DC. So great to see him! Perked Cassie up. But she fell asleep halfway through his time with us. She slept a lot yesterday.

There’s been a lot more throwing up since then. Because she hasn’t eaten and it’s mostly stomach bile (sorry for image), we are using a suction at her bedside to try to capture it. Sometimes it’s just dry heaving because there’s nothing in her belly to get rid of. She’s so miserable, but also makes sure I get Za and Sandy, her “guys,” out of the way so they don’t get vomited on. She got started on Phenergan, an anti-nausea medication they can do by IV and which she got during surgery, and is still on Zofran. I went to bed around 11pm after she got all her meds and mostly slept until 4am when she woke up having to vomit. It’s been a couple of hours of her throwing up and is heartbreaking. We lowered her continuous pain med last night to see if that would help and have just lowered it again. She still has her pain button if needed.

I’ve been too nervous to try to sleep again, so I thought I’d update you all instead. Dr. Sponseller should be by very soon so we will see what he has to say. Nausea is a symptom of a spinal fluid leak and I’m worried about that, though there are other reasons why she could be throwing up. Hope we get this figured out this morning.

I'd rather be on spring break

I’d rather be back on spring break

G-tube/weight gain update or Freddy comes to town

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

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.

Decent night and morning

Cassie is doing well this morning, and we had a decent night last night. Her surgeon came in early this morning and said that he saw no evidence of spinal fluid that is still leaking (she has a drain from the surgical site in her lower back that he could check) but that he wanted to stay ahead of any problems and wants her to stay flat until tomorrow morning. This was not what Cassie was hoping to hear, but I had a feeling that’s what he would say. You can get super terrible headaches from spinal fluid leaking and we really don’t want to go down that road. She has compression socks on to keep the blood circulating and I’m hoping she’ll be able to get up tomorrow morning.

Her pain has been well-controlled and she hasn’t vomited post-surgery. We are going to start some g-tube feedings later today. She’s been sleeping on and off and we had one 3-hour stretch of sleep last night. Her nurse started a continuous pain medication last night which meant that she had to do hourly blood pressure checks for a few hours and at 3am, she apologized that we hadn’t gotten much sleep. Cassie said, “That’s okay. It’s my fault Mommy’s awake. I’m so perky!” She really was quite perky in the middle of the night and I was worried she’d be up until morning, but she managed to de-perk and go back to sleep.

We’ve been FaceTiming with Penelope and the Prestons and some other friends, which really boosts Cassie’s spirits. I say a little thank you to Steve Jobs every time her face lights up as she sees her sister and/or friends come up on her iPod screen.

Not much else to report at the moment. Good to be boring. Thought I’d leave you with some examples of the types of conversations Cassie, my caring little self-advocate, has with the health care team.

With the orthopedic residents:
Cassie: “When will I be able to sit up?”
Resident: “Dr. Sponseller will decide when he comes to see you.”
Cassie: “How will he know it’s okay? Will he do an X-ray?”
Resident: “No, not an X-ray. He will see if there is clear fluid coming out of your drain. And we will help you sit up and see if it hurts.”
Cassie: “Okay. I can handle that.”

With her nurse:
Cassie: “Which medicine are you giving me?”
Nurse: “Zofran.”
Cassie: “What’s that for?”
Nurse: “It’s to help your belly so you don’t get nauseous.”
Cassie: “Are there any side effects?”
Nurse: “Not really.”
Cassie: “No constipation?”
Nurse: “Nope, no constipation.”
Cassie: “Okay. That’s what I needed to know.”
With me:
Cassie: “So what does your bed look like this time?”
Me: “It’s one of those reclining chairs that gets pretty flat.”
Cassie: “Oh that’s too bad. The little couch is more comfortable.”

I’ve said it before and I’ll say it again: I hate how much she knows about being a patient, but man, am I proud of her.