A Claire Bear update: neurosurgery on Monday

We just got back from a visit with our (much loved) neurosurgeon, and based on new information in last week’s MRI, we have decided in consultation with her and another neurosurgeon she asked to give a second opinion, that it’s time for Claire to get a shunt placed to treat her hydrocephalus. The lay explanation is, due to her spinal defect and chiari malformation, Claire’s cerebral spinal fluid doesn’t drain from her head and spine properly, causing fluid to build up in her head (aka hydrocephalus). While she has had the hydrocephalus from the start, we and our surgeon chose to take a conservative approach instead of operating when she was a wee baby, because surgery is always risky, because the risk of infection and complications is greater in younger babies, and because clinically, she was having no symptoms or problems from the hydrocephalus other than a big head as a result of the fluid buildup.

However, the MRI we got last week showed that not only are the ventricles in her head very large, indicating a lot of fluid has built up there, but also she has developed a syrinx, or pocket of fluid within her spinal cord. This has the potential to cause her to have problems with her arms and legs, and given the great strides and progress she has made mobility wise, and the hope we have for continued progress, we do not want to risk this syrinx compromising her physical abilities in any way.

It is for these reasons that we’ve agreed to have the shunt placed on Monday morning. We are of course a little disappointed that she has to have neurosurgery, but we are ultimately confident that this is the right time, and hopeful that taking this step now will give her the greatest chance to achieve all she can developmentally. She’ll stay one night in the hospital, and then should be back to her normal activities within a week or two. Thanks for always cheering Claire on– her internet fan club means more to us than you can know.

Claire Bear: an update

It’s been a while since I updated all of Claire Bear’s fans on how she’s doing these days. Most readers know that she has spina bifida, that she had surgery just days after birth, and that we’ve been sort of waiting to see how much her spinal defect will affect her.

The short answer is: she’s doing great. She’s a chilled out, happy girl who is a bit of a ham. She can charm any stranger with her bright eyes, big smile, and penchant for waving, giggling, and clapping. She is also a very observant little person, and seems to constantly be watching and figuring the world out. Even though she’s not into eating solid food yet, she loves to swipe pieces of it off her sister’s high chair tray, and before she got moved into the older room at daycare, would sit on the mat and swipe toys from smaller babies as they crawled by. She even figured out, on her own, from observing Etta, how to get from sitting unsupported down to her belly so she can roll around to wherever she wants to go. Where I used to be able to count on finding her wherever I left her, now she’s known to roll out of her room and down the hall. They even call her “the mechanic” at daycare, because she likes to roll under all the cribs and appears to be inspecting and fixing them.

Medically, she is doing really well also. She had a looooong day at the spina bifida clinic yesterday, and we saw rehab, urology, and orthopedics. Ortho continues to be impressed with how much function and sensation she appears to have in her legs considering the location and severity of her spinal defect, and the good news from urology is that we don’t have to start using catheters or anything at this point (bladder issues are very very commonly associated with spina bifida). Rehab, formerly a sore spot for us since one doc declared “she will never walk” after a very poor examination even after we said that she supports her weight on her legs for short periods, went OK too. We actually got to show the doctor how she can stand with support, and we got our first prescription for some AFOs, essentially her first pair of leg braces, which we hope will support her ankles and knees and help her learn to crawl, stand, and walk.

She’s been going to physical therapy for a couple of weeks now, and we are so happy to finally have that started. The therapist turns out to be the older sister of a friend from high school, and I have to say I just love her. Despite a very teary first session in which Claire *wailed* the entire time (her stranger anxiety has really ramped up lately– she also recently wailed at ZaZa’s, a local pizza joint, when the most grandmotherly, sweet-looking woman in the world dared to approach her), Claire has realized her PT is pretty cool and has neat toys, and now only cries when tired or frustrated with an activity.

Because Claire needs 3 PT sessions per week, 3 OT sessions per week, and now we’re talking about adding in speech therapy to help with her oral issues, we are working on getting her into a developmental preschool where she could receive all these therapies on site. With another one year old to wrangle, coordinate care for, and generally deal with, taking her to and attending that many sessions per week myself would really just be a logistical nightmare, and we’re so thankful this is even an option, that I could drop her off and know she was getting care from folks who don’t have a single issue accommodating her needs. Much as we LOVE LOVE LOVE our current daycare, the fact that she’s the only kid in her room who can’t feed herself or take a sippy cup is a bit of an issue. Even better, the preschool takes siblings, too, so if I get a job in the fall, Etta could join her. And the best news of all? Claire’s Medicaid TEFRA, a benefit she qualifies for because of her disability, for which we pay an income based premium, which covers basically all of her care not covered by the insurance we get through my husband’s work, would completely cover the cost of the preschool for Claire. AMAZING!

So, now I’m on the hunt for cute shoes that fit over AFOs (I’m thinking a sweet pair of mint green Vans might be my choice), and just generally excited that our sweet girl is finally getting the help she needs to make some progress in the mobility department. She’s starting to realize that Etta can do things she can’t, and it has her raring to go!

 

but which one’s older?

Last night I was reading a New York Times profile of Megan Rapinoe, a soccer star I really admire. The piece mentioned that she has a twin sister, and went out of it’s way to let readers know that her sister is “older by 11 minutes.” Cue the sound of a record scratching in my mind.

I have twin daughters. People love to ask us questions in public, and one of their favorites is “Which one is older?”

Let me stop right here. Say you meet someone. Say it comes up that you were both born on March 28. Would you ask that stranger what precise hour and minute he or she was born? Or would you just say, “Wow, we have the same birthday! We’re the same age!”

I think people ask this question because, like most of our first-meeting questions, we’re trying to “place” people and figure them out. Asking about birth order lets us know which one is supposed to be the bossy older sibling, and which one is supposed to be the attention-seeking youngest. People even seem to believe that the “older” twin should also be the bigger one, as if the 6 lb. size difference that currently exists between Etta and Claire could be attributed to a head start gained by a few extra minutes out in the world. These things are stereotypes at best, and they’re simply not useful in the case of twins, and, I believe, can be harmful. It attempts to impose a hierarchy where none exists.

I have heard about “older” twins lording it over younger twins, and about parents who truly treat their twins as if there is some sort of inborn difference that results from what is essentially the luck of the draw. Wherever an egg implants in the uterus, the twin closest to the “exit” is born first. And in the case of a c-section, isn’t it just whom the surgeon grabs first?

In a society that loves to label people and to lump twins together, I want my girls to feel loved and supported for the individuals they are, not shoehorned into some sort of role, be it birth order, or gender, or religion, or whatever. I don’t want strangers deciding that one is “the bossy one” because she’s “older” or something. I’m even thinking I may just keep mum on the whole thing if asked. Because really, from the moment of conception, their cells have been dividing the same. The entire time I was pregnant, they were the same gestational age. They still are. Who was first pulled out into the sterile brightness of the operating room really doesn’t matter much to me.

Etta and Claire’s First Fiesta

Well, it’s official. My baby girls are now leaving the baby stage behind and headed toward toddlerhood, as they are ONE! I’d be sad about how quickly time has passed, and continues to pass, but they are mostly so much fun right now that who can be sad about that? They’re exploring and learning and growing and really coming into themselves personality wise. They interact with each other more than ever, and their relationship is so cool to watch. Etta will be walking any day now, and we hope Claire will be catching up soon, as she’s getting started with PT and OT (I promise a complete Claire update soon). Basically: having one year old twins is just crazy and busy and cool, and I don’t have time to be too wistful.

We celebrated the first year of their lives, and the fact that we survived it, with a fiesta full of people we love and who love us. My fashionista sister not only came all the way from Nashville with her new FIANCE and two pugs in tow, but she also took lots of pictures with her big fancy camera. So, now you get to share in what was a truly lovely day, despite gray, drizzly skies that forced what was supposed to be a back yard party indoors. Not that location matters much when you have a margarita machine, you know?

In which I compare having dogs and having babies

We used to be smug first time parents.

Dog parents, that is.

See, when we got our first dog Bessie, we just went to a shelter one day, found a pretty cute pup who seemed playful and friendly, and took her home. There was some puppy chewing of throw pillows and Playstation controllers, but for the most part, she was a freakishly good dog– well behaved, friendly, easy to get along with. Naturally, we thought this was all our doing. We’d go to other people’s houses and encounter unruly dogs who jumped up or begged for food or used the bathroom in the house, and we’d leave thinking to ourselves, what is wrong with them? They’re clearly doing a terrible job as pet parents! We’d think, if only they were as good as we are, they wouldn’t allow that behavior.

Then we got a second dog.

Olive, it turns out, is a vastly different dog, despite our clearly superior dog parenting abilities. In the years we’ve had her, we’ve been completely unable to teach her not to put her paws on us or attempt to climb in our laps or onto the furniture, both places she isn’t allowed. We have had to come to a very shocking conclusion: it’s not that we’re amazing dog owners, we just had a really amazing first dog.

This is a realization I think more first time parents need to come to. It’s a realization we’ve come to yet again as we parent twins who, at every turn, seem determined to remind us that they are very distinct individuals. It started when Claire began sleeping through the night on her own at about 3 months old. Etta still hasn’t mastered that feat. Baby sleep in particular seems to be an area in which everyone fancies themselves an expert. Particularly if they have one kid, the baby equivalent of a Bessie dog, they’ll happily tell you that all you need to do is exactly what they did, and you too will have a baby who sleeps through the night. I hope their next baby is an Olive, every time. Because even though we use the exact same techniques and parenting styles on both of our girls, one sleeps and one doesn’t. We can’t anymore take credit for Claire’s awesome sleeping abilities than we can the blame for Etta’s lack thereof.

The same thing happened with food. Claire took happily to purees quite easily (around 6 months), while Etta has always refused to let us spoon feed her. Several months later, at 10 months, and Etta has only recently decided that while she still hates purees, she’ll willingly chow down on any food she can hold in her own fist. Truly baby-led Baby Led Weaning. I can’t take credit for how either of my girls eats, really, either– they each just do their thing, and I figure out what that thing is through trial and error.

So, you parents of one baby who think you’ve got the whole sleeping and eating figured out through your superior skills? Your kid is probably a Bessie. The next one just might be an Olive.

she will know that i am mother

I’m in my next to last week of classes for my MA program. I’m in the middle of a bunch of academic writing on books like Beloved, Ceremony, and Salvage the Bones, all of which explores the power and ferocity of woman- and mother-hood.

I’m also quietly in the trenches, dealing with a sick baby who’s been running a high fever and barfing so much she had three baths in one day yesterday. It’s a funny thing, the juxtaposition of all of my intellectual thinking about motherhood as some sort of abstract force against the raw power of literal motherhood as this thing that I do, this person I am as I hold a tiny person and just go ahead and let her finish vomiting all over me, just sit there and let it happen, because I know she’s not done yet and attempting to move, or get out of the path of the flow will just exacerbate the mess.

The last lines of Salvage the Bones (which, I swear, this isn’t a spoiler) are “She will know that I have kept watch, that I have fought…She will know that I am a mother.” In this case, I am the she. I am the one who knows. And I am the one who is. In caring for my sick baby, just as I have already many times before in my 8 month stint, just as I will many times to come, I just become unblinkingly confronted with this new fact of my existence. I am a mother. I am the heart that beats the rhythm of comfort under the skin and bones upon which rests the fevered cheek of the one who is flesh of my flesh. What a strange and wonderful privilege it is to provide that resting place. To encircle that tiny, weary person with my arms. To know that I am her mother.

Reading Salvage the Bones with Claire resting in my lap. Etta was napping in the bouncer that I rocked with my feet. It’s how this mother gets her schoolwork done.

the wonder of opening up

Me and one of my sick, sweet babies. Still smiling!

The other day, I wrote a really honest post about the exhausting hardness that is being a parent to two small children and trying to do just about anything else. I was feeling incompetent at life, and because I’m a writer, because literally that is who I am, because even the code of my DNA probably spells words, the way I worked out those feelings was to write them. And cry.

And then something amazing happened: that post got (as of this writing) 21 amazing comments. And on Facebook, where I also shared it, I got 12 other amazing comments, plus a couple of supportive private messages. And the support continued on Twitter. And this morning, a lovely friend took the time to send me an email that warmed my heart and brought tears to my eyes. While one commenter called me a downer, every single other woman who commented did two things: they affirmed that my feelings were normal and OK, and they assured me, things do get better. Time passes. Nothing stays the same. It was an amazing experience of the best of the internet and its power to bring us together and let us know we are not alone. I am beyond grateful. Today, even though I’m home, still in my pjs at 3 pm with two sick babies who have croup and are just beyond pitiful, my heart is lighter. And I feel strong and confident.

Buoyed by this love and more than a little indignant at the downer comment, I posted this on Facebook:

And while I’m actually kind of proud of that line and think it really says it all, I’ve been doing a lot of thinking about what it means to be a woman, a mother, and a writer, and what it means to put my heart out into the world through my words, and I’ve found (shock me shock me) that I still have some more to say.

Despite a comment that would minimize and silence my giving voice to my experiences with the more painful side of motherhood, I will not be minimized and silenced. Tellingly, that comment, the only one that wasn’t encouraging in some way, came from a man. I’m taking a course on women writers this term, and over and over in the works I’ve studied, women writers depict women writers with men in their lives who don’t understand why they can’t just be content, grateful even, with their lives as wives and mothers. Why they feel a yearning for more, why they simply must write. Any woman who, like me, attempts to express anything but sweetness and light concerning motherhood feels the need to qualify it with caveats about how much they really do love their children, husbands, and homes, for fear of being criticized by a society that constantly tells us to be grateful and enjoy every moment.

All that does is leave you feeling guilty when you inevitably fail to live up to that standard.

Based on the love that was poured out to me when I poured out my heart, I have to say: it is worth that risk. Because when you pour out your heart, you invite others to do the same, and they will, and you will feel less alone. The great Flannery O’Connor wrote in one of her letters: ”In the face of anyone’s experience, someone like myself who has had almost no experience, must be humble.” We don’t get to tell other people how to understand, frame, or feel about their experience. But we can let them know that they’re not alone in having it.

I’m so thankful to all the folks who let me know that I’m not alone this week or in this life. You have been a model for how I hope to respond the next time the shoe is on the other foot and someone opens themselves up.

Awareness

I found out today that October is Spina Bifida Awareness Month. My first thought was: what a crap choice in awareness months. I mean, everyone knows that October is Breast Cancer Awareness Month, as pink has pretty much blanketed everything we see.

But then I thought, well, it’s just as well, since I’m generally skeptical of “awareness” in general. I mean, I’m not usually sure of what it accomplishes. Half of the pink I see this time of the year seems to have no real point, as most of us are aware that breast cancer exists, and the pinkwashing is often unaccompanied by anything about breast exams or early detection or risk factors or anything.

Feeding tiny Claire in the NICU.

I guess people are less aware of the realities of spina bifida. SB is a congenital defect of the “neural tube” which is the part of a fetus that eventually becomes the baby’s head and spine. Claire’s neural tube didn’t close properly, and when she was born, she had 4 centimeters of her spine visible from the outside. As a result of this defect, things like nerves weren’t hooked up properly, so she has/will have certain amounts of disability in her legs, bladder, and bowels, in addition to hydrocephalus, or fluid building up in her head (which for many people with SB requires surgery to place a shunt and drain the fluid, though we haven’t had that yet). While her spinal defect was one of the more severe types, she seems to have good enervation and musculature in her legs, and her doctors and physical therapists believe she will walk and will only need braces to support her ankles, though some people with SB require more extensive bracing or even use wheelchairs.

I certainly didn’t know all of this or really much about SB at all, and it really wasn’t even on my radar until my birthday last year, when we went in for a 20 week ultrasound, excited to finally learn our babies’ sexes, and instead learned that the baby we’d later name Claire had SB. It was a really scary, sad day.

But the thing I needed awareness of that day wasn’t just “spina bifida” as some vague concept. I needed to be aware of the beautiful reality that would be my daughter’s life. Yes, we both had a rocky start. She had surgery at two days old. She was separated from me for 9 days. She was in the NICU for two weeks. She had to stay on her belly for 6 weeks while her back healed. But despite all of that, she’s really just a baby. They’re all very needy. They’re all very fragile. They’re all very tiny. They’re all amazing little creatures. If you looked at my two girls today, you might not be able to guess which one has SB.

If I could go back to last December 16 and make myself aware of anything it would be this: Claire is beautiful. She is funny. She is sweet. She has a radiant smile. She loves to eat. She loves her mama and daddy. She is exploring and learning and growing every single day.

I was so worried about all the ways she’d be different from her able-bodied twin sister, but the reality is, they’re both just babies. They are completely different and yet so very much the same. And almost all of my worrying was completely unnecessary. That is what I needed to be aware of: that there was nothing to be afraid of.

So, no, you likely won’t see NFL teams raising awareness for SB this month, or yellow covering all your favorite products in the name of raising funds. And while you may not personally know anyone affected by SB, now you know a little more about our story, and a little more about my baby Claire, who is special, just like everyone else.

Claire the Bear today.

they come in peace (I hope)

Today, I have 6 month olds. I am still trying to wrap my mind around it, because in my crazy mom way of thinking, it’s like their babyhood is half over.

I’ve also recently come to a new understanding of the babies. I know in the past I’ve said that babies are pandas. And I still stand by that comparison. But I’ve come to a new way of understanding these tiny beings: they’re aliens, sent to learn about our way of life and report back to their people.

They watch us, but they don’t really understand what we’re saying, and we don’t exactly speak their language, either. They find our culture strange and often bewildering, but they’re generally willing to humor us, with our strange rituals and insistence on things like giving them baths and changing their diapers. They’re observing us and compiling data for their report to their leader, usually with a sort of detached wonder, the appropriate posture for a tiny scientist or anthropologist sent to another world, but occasionally their faces betray other emotions, and sometimes, they break down altogether under the strain of their difficult and top-secret mission.

I often wonder about the stories they’re going to take back to their leaders, but sometimes, when they scream in the middle of the night, I’m not so sure they really come in peace.

cloth diapering twins 5 months in

My initial post on cloth diapering our girls has been so popular, I thought I’d write a follow-up now that we’re 5 months in, as I wrote the original only a week or so after we moved into our one-size diapers. So, see that post for the most detailed newborn cloth diapering info, and this one for cloth diapering past the newborn stage.

The short version is that yes, folks who keep asking me if I’m “still doing that cloth diaper thing,” I am, and I still love it. Here’s the more detailed version:

What diapers are we using? Which are our favorite? Least favorite?

For daytime, we exclusively use one-size pocket diapers. We have well over 50 changes, as a few friends gifted me some used BumGenius pockets since my last post. We have mostly BumGenius 4.0s, and we really like them. I can see from the used ones that the aplix (Velcro) closures don’t necessarily hold up great long-term, but I still like the aplix best for fit. So that might be something to consider if you plan on using your diapers for multiple kids– the snaps hold up better over time, even if you can’t quite customize the fit as well.

My second favorite diapers are probably Alva Baby, and they’re only my second favorite because they run slightly bigger, and because I just don’t have as many of them. Honestly, though, if I were buying a completely new stash, I’d probably just order Alvas. You could get 24 Alva pockets for $115 and have a great stash of diapers to last from about 10 lbs through potty training.

My third favorite is probably our Rumparooz, but because I don’t absolutely love them, I sold I’m planning to sell the 6 I have (so let me know if you want them!). On the bright side: they’re well made, I like the colors, and I love the inner gusset for containing runny baby poo. Their inserts are probably the most absorbent microfiber inserts I’ve seen. The downside for us is that they just don’t fit our girls great. I often have gapping at the waist. It rarely leads to leaks, but it did cause my one and only poop blowout in cloth, doubly frustrating because we were in a waiting room when it happened… (It came out the waist in the front. Ick.)

My least favorites are Fuzzibunz OS Elite. The PUL (the waterproof outer fabric) is “sticky” on the inside, and the pocket is narrow, which makes them really hard to stuff. I can’t even imagine getting an extra insert into them for when I want extra absorbency. I also had one of the snaps pop off one of my diapers (I’ll be contacting customer service to get a replacement under the warranty).

What about nighttime?

We have a couple methods for nighttime. The most bullet proof is still a Thirsties Fab Fitted with a Thirsties hemp insert in a Flip cover. Fitteds are a popular choice for nighttime because the entire diaper is absorbent, not just the insert, so you’ve got the “soaker,” the outer of the fitted, plus an extra insert, all absorbing. We can go over 12 hours without leaks in this combo. (Some folks also let their kiddos run around in just a fitted and no cover at home, because it allows more air flow which can prevent rashes. You’d definitely need a cover for leaving the house or if you were putting pants over, though, because otherwise you would have soaked pants! At home you can just change the minute you notice the wetness has migrated to the outer layer.)

We also use a BumGenius 4.0 with a Thirsties hemp insert overnight with success. This is also my go-to method when we’re going to be in the car for a while, or when we’re going to be out running errands and I don’t want to have to drag both babies into say, a Target bathroom for a change. (My pockets with their microfiber inserts are good for about 2 hours between changes. Adding one hemp insert really makes a difference.)

How does it work when you’re out of the house?

I still do cloth diapers when we leave the house. They’re definitely bulky for the diaper bag, but my diaper bag is now a Patagonia Half Mass messenger bag that holds all my twin gear. Not a problem. I just change them like normal and stuff the dirty diaper into a wet bag to deal with when we get home. I also carry an emergency stash of disposables in the event we blow through 4 cloth diapers while out and about.

What about daycare?

Our girls go to daycare 3 days per week while I finish grad school. Our daycare does not cloth diaper, and I’ve yet to hear of any in my city that do. I keep disposable diapers on hand at home so I can send them to daycare in a disposable. They supply the diapers they wear all day while there, and then I put them in cloth when they get back home. I’m not so militant that I can’t allow my girls to wear disposables a few days per week so I can get my degree finished.

It’s also good to have some disposables because of what I call…

The diaper rash cream situation

You can’t use just any diaper cream with cloth diapers. Desitin, Butt Paste, A&D, Balmex, they’re all out, because they coat the fibers of the diapers and ruin their absorbency. California Baby is the most readily available cloth diaper safe cream, and I can get it at Target. It’s not very thick and doesn’t sit on the skin as a protective layer, so it’s not the greatest for major rashes. Burt’s Bees is cloth diaper safe according to many, and it’s nice and thick, but I’ve found it sometimes leaves a residue on my diapers that has yet to affect their function, but annoys me nonetheless. If I’m really dealing with a rash (mostly this is with Claire and I believe is specific to her because of her spina bifida and having many many more frequent wet diapers than her sister), I either use a flushable liner in my cloth diapers or put the girls in disposable diapers so I can use an “unsafe” cream.

I also go super hippy dippy and use coconut oil as a moisture barrier and rash preventer. I keep it in a little tupperwear and slather it on at changes to keep wetness off their skin.

The laundry routine

I still don’t find cloth diaper laundry to be much of a burden. I generally wash every day, but now that the girls are in daycare, they don’t go through the diapers as fast. Basically, once the wetbag is full, I start a load of wash in the morning. I have a front-loading Samsung HE machine. I do a cold “quick wash” with no spin, then add my detergent and do a hot/cold “normal” wash with an extra rinse. We use Tide Ultra Original HE powder, and it works great. I wanted something I could buy at Target. I usually tumble dry my inserts and hang my pockets to dry.

Currently, I just toss the dirty diapers right in the wetbag and then they go straight into the wash, but we are rapidly approaching the end of this simple era because it’s almost solid food time. Solid food poops are not water soluble like formula and breast milk poops. With solid food poops, I will have to “plop” what I can into the toilet, and am planning to get a diaper sprayer to rinse them off into the toilet. When we leave the house, I will use flushable liners.

In the evenings, after the girls are in bed, I stuff the inserts into the pockets, usually while drinking wine and watching TV. It’s really no big deal.

Overall, I still love cloth diapering. In fact, I may or may not have made up a parody version of “I like big butts” by Sir Mixalot, dedicated to their fluffy cloth diaper butts.