Bifin’ Ain’t Easy: The Surgery Edition

Yesterday, my husband took Henry up to Park Ridge for his tendon release and casting surgery to correct his bilateral clubbed feet. Henry is fine and recovering well (aka sleeping a ton) but the surgery did not go as we expected.

Ignore the blurriness. Have you ever seen a little boy more adoring of his daddy?

Ignore the blurriness. Have you ever seen a little boy more adoring of his daddy?

Apparently, Henry’s little bones are all jacked up, and his clubbed feet are irregular, even for a kid with spina bifida. His talus bone, I guess, is bent at a weird angle, which complicates the surgery and the casting a little bit. Here is what I understand in laymen’s terms:

Normal club foot repair surgery: Doctor goes in, releases the tendon (shudder), turns the bones, restructures the foot with a splint, and casts the foot to keep it in place.

 What they did with Henry: Doctor goes in, releases the tendon, goes to turn the bone and sees that it’s weirdly shaped and turning it would make his foot even more crooked. Doc scratches his head. Doc sews up the leg, casts it, and hopes that the casts will do the work of flattening his feet and restructuring the foot on its own. If that doesn’t work, Doc will eventually have to remove the bone altogether.

What this means for Henry is that we have to cast his feet ONE AT A TIME, to see if the procedure is successful on one foot before we start the procedure in the other foot. The reason they can’t just release the tendons from both feet and cast them at the same time is that if the surgery doesn’t work and we need to remove the bone, scarring from the first surgery can complicate the second procedure. So instead of casting both his feet for a few months and being done with it, we have to go through the casting process for one foot, see if it flattens and straightens, and then go the tendon release surgery and the casting process ALL OVER AGAIN six months later.

So eventually, the clubbed foot is going to be corrected. But we’re going to have to take a much longer route to get there.

Not to be a Debbie Downer, but this … kind of sucks.

My sweetest little boy in his foot/leg cast. I've never seen his leg look so straight!

My sweetest little boy in recovery. I’ve never seen his leg look so straight!

Don’t get me wrong — I am so thankful that we have the resources to fix his clubbed feet in the first place. I know that for the majority of children in the world, this surgery isn’t even an option. Some people live with clubbed feet their entire lives. I’m so glad we get to have this procedure done, even if it’s going to take us a little longer to cast his feet than we expected.

The difficult part about this, though, is that our hospital is 90 minutes away. And will have to drive up there every week for several months to re-cast his feet and legs. That’s a LOT of gas. And a LOT of time. Days that we drive up to Park Ridge I consider “survival days” — we’re just doing the minimum to survive. June watches a LOT of TV (we have a TV in our Honda Pilot; it’s pretty freaking sweet for long drives), both kids eat a lot of snacks, both kids play with the iPad for far too long to keep them occupied while I talk to the doctors. It’s not ideal, but it doesn’t happen very often. This casting process means we’re going to have many, many “survival days,” and that kind of just breaks my heart. I like spending our days quietly at home, not throwing bags of Goldfish crackers in the backseat and cranking up the volume on the television so I can concentrate on finding the right highway exit.

This is one of those days where I really hate the ‘bif. It can be such a freaking drain — on your family, on your finances, on your time, on your health. On EVERYONE. And I don’t say this because I’m complaining — I’m saying this because this is what spina bifida looks like. This is reality. It’s not doom and gloom, but it’s not always rainbows and sunshine either.

So this kinda sucks. But you know what? We’re grateful for this experience. All of it. No mom really wants to see her child suffer, but I’m hoping that Henry will struggle just enough to become a young man of character. I’m hoping that not only will he eventually have functional feet, but also that he can use this experience to encourage other people as well. What if one day some kid in his elementary school class has to have surgery for a broken leg, and he’s terrified? What if Henry can draw on this experience and help assure the kid that if he can have casts for months on end, so can anyone? And maybe he’ll give the kid a smile and a hug and a promise to draw a picture on his cast as well. Wouldn’t that just be the best?

We’re gonna use this shitty situation for the glory of God. We’re gonna turn this tragedy into a triumph — one leg at a time.

Goodbye to Two

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June got mad at preschool today — really mad. For her, anyway.

June, Henry and I go to a mommy-and-me preschool type thing right down the road from our house, and all of us love it. It gives us structure, it gives Henry exposure to other kids, and it gives June some much-needed socialization. She’s usually introverted and shy to the point of catatonia. But not today.

Today we were sitting in our semi-circle with all the other kids and their mothers for story time. Instead of a story, the teacher pulled out a wooden Melissa and Doug birthday cake and we sang Happy Birthday to the three kids who had turned four over the weekend. Apparently, June was not having it. She left the reading circle, sat with her back toward everyone else, and crossed her elbows, clearly pissed.

“I NOT singing that song, Mommy,” she said. “I just NOT singing it. It’s MY birfday TOO.”

“No, sweetie, it’s not your birthday until next month. We’ll sing happy birthday for you next month. Right now it’s their turn.”

“NO.” She said, sticking her feet straight out in front of her, in defiance. “It’s my birthday NOW. I three NOW.”

And it hit me: Whoa. She’ll be three soon. One more month, and I’ll no longer have a two year old.

And, ouch, my heart. On the way home, trying to hold it together, I made a mental list of things we’ll be saying goodbye to, when two is officially over: This is the last year she’s going to reach for me to hold her when we walk down the steps. This will be the last year she’ll plop down on my lap and kiss me on the lips and say “I yuv you!” without provocation. This is the last year she’ll pronounce frustrating as fushing! God willing, this is the last year she’ll eat ONLY CEREAL for every single meal.

“Mommy, can I have some — ” NO

I’m not ready.

I want more.

I know everyone tells you not to “wish the days away,” but the newborn days suck, and I definitely wished them away. All of them. I would happily hold them in my belly until the twenty-fifth trimester so I could avoid the nursing-for-a-half-hour-every-forty-minutes stage. (Otherwise known as the is-that-blood-jesus-christ-my-nipples-are-bleeding-again-somebody-please-anesthetize-me stage.) It’s not my favorite stage. I cherish my sweet newborns, I do. I hold them and kiss their milk-lips and nibble on their cheeks when they’re sleeping. And then I toss them in their baby swing and run like hell so I can take a shower and ice my nips.

And I’ll probably get crucified for saying so, but anything before eight weeks is so boring. They’re cute and everything, but it’s just a lot of work for not a whole lot of payoff: How’s the baby? Uh, he weighs, like, ten pounds now, I think? He nurses a lot still. He really likes playing with this kleenex box full of scarves. He doesn’t *quite* hold his head up yet — but maybe soon! Wow. Riveting. All that excitement totally makes up for the ninety cumulative minutes of sleep I got last night.

Oh, yes, it will. But we parents of newborns call it “the scare ball”

When I think of being pregnant again, I inwardly groan, because pregnancy. And newborn stage. And bleeding nips. But when I think of having another one- or two-year-old, I could have a million of those and never get sick of it. Two is when some of this parenting stuff actually feels like it’s starting to pay off. Two is when you can opine on their personality instead of run through a laundry list of boring milestones.

I am not a weepy, emotional mother by any means (unless I skip my zoloft for five or six days and then let’s just say I’ve been known to binge-watch Keeping Up With The Kardashians all afternoon and cry when Kim loses her earrings in the ocean). I am not nostalgic and I never cried when my babies reached their milestones. I never told them to slow down, you’re growing up too fast! I told them to hurry up and sleep through the night, so I don’t feel like killing myself!

I am guilty of wishing the days away. I am lazy. I don’t like work. Motherhood is hard. Sacrifice is really really hard. Having bleeding nipples and no sleep and wonky anxiety hormones sucks so badly. I’m not nostalgic for these moments. Probably because I’m in the thick of them.

Truth. And I’ll scrapbook WHEN I’M DEAD.

But two is the exception. It’s kind of throwing me for a loop. It’s so very challenging and so very, very joyful. Even when I’m scolding her for throwing her underwear at me yet again, or when I’m leading her by the hand, screaming, into Time Out because she threw a toy at her brother (“FINE, I SHARE!”), and I just want five minutes where she doesn’t ask me for another bowl of goddamn cereal, I feel so much joy and love in my heart that I catch myself smiling when I shouldn’t be. I sneak upstairs where my husband’s working and relay everything naughty she’s done and hold back laughter until my abdomen aches.

I’m not ready to say goodbye.

I want more.

What Spina Bifida Looks Like (So Far): An Update

A few weeks ago, the kids and I went to weekly Rosary at our church. (In the interest of full disclosure, lest you think we are super holy or something, we showed up late and I knew about half the words to the Hail Holy Queen prayer. What I did remember sounded something like, “Hail, Holy Queen — sit down! — our life, our sweetness, and our hope. To thee — sit on your bottom! Now! — do we cry — stop crying! — poor, banished children of Eve — just take this candy. EAT THIS CANDY AND BE STILL!

 and et cetera.)

 I was chatting it up with another woman afterward, and I casually mentioned something about Henry having special needs. (I don’t know how these things come up in conversation. Honestly, whenever I’m first meeting someone, I just want to blurt out Henry has spina bifida! — not because I think it’s relevant, or that it defines him, necessarily. But because people are always shocked when we’ve been talking for a while and it inevitably comes up. I feel like I’m hoodwinking people. This woman was no exception.)

This woman was stunned. “Special needs?” She said, visibly taken aback. “What’s wrong with him?”

“Not a thing,” I said. “But he has Spina Bifida, so he has some mobility problems.”

“He does?”

“Yeah, along with some other things. He has a shunt.”

“What? You can’t even tell!”

“I know, right?!”

These conversations never fail to make me laugh. I will never forget Henry’s many ultrasounds, and hearing the words shunt and clubbed feet and multiple delays, and imagining myself giving birth to, well, some kind of creature. In utero, he seemed more like the sum of his various disabilities rather than an actual person. When I was pregnant, I desperately wanted a glimpse of what he would look like at birth, at six months, at one year. Would he be okay, in spite of his problems? Would be be deformed and eternally pitied?

And the ultimate question — Will I be able to love him? Will other people?

Fourteen months later, you’d have to be insane not to love him. He’s a butterball. He’s incredibly social — the opposite of June, who doesn’t want anything to do with you if you don’t have candy — and constantly babbling, smiling, laughing. Amazingly, he has no cognitive delays so far. He is scoring ahead of his age, developmentally, in a few areas. What I would have given to know that when I was pregnant with him. The most common question people ask me is, how’s Henry doing? I never know what to say, other than he’s incredible, he’s doing great. He’s got some medical issues, obviously, but they’re just such a small part of who he is, and they affect our day-to-day life so little, his good-natured, super strong personality just kind of eclipses all of that. He’s just great.

But anyway. Because I so desperately wanted a “future preview” of sorts, when I was pregnant, I’m hoping to provide one now, for anyone else who is wondering how Henry’s doing, and for anyone who is currently pregnant with an SB kid and wants to know what SB might specifically look like a little farther down the road. So given that Spina Bifida is a spectrum, and that all children look and develop differently, here is what Spina Bifida looks for us, 14 months out of the gate (and by “gate” I mean “vagina”).

You’re welcome, for that visual. Also jk I had a c-section.

So how can you tell he has Spina bifida?

He was eight weeks old here btw

Probably the most glaring defect Henry has is clubbed foot. By far, this was the thing that scared me the most when I was pregnant with him, other than the prospect of him being severely mentally handicapped (which, actually, is a rarity with spina bifida). The term “clubbed foot” sounds like such a horrible, grotesque anomaly. I had no idea they would be perfectly adorable baby feet that were turned inward. So not the nightmare that I was expecting.

Truth be told, we love these little hook-feet. He crawls all over the floor, and his little hook-feet catch various things and drag them across the floor with him. We’re always having to chase him down and pluck things out from between his legs. They are ridiculously soft and smooth and precious.

People ask us often when we’re going to “fix” his feet. The answer is June. We have a “tendon release” in his feet (::shudder::) and ponsetti casting scheduled for the first week of June — we wanted to wait until he was able to use those muscles developmentally, with standing and pulling up and such, so that he would potentially have a better outcome. Is it crazy that I’m going to miss these tiny feet? Is it crazy that I look at other babies’ feet and think, “Wow, those are so big and weird-looking! EW!

WRONG. Give me little hooked parenthesis feet or give me NOTHING AT ALL

One thing that’s been problematic about Henry’s SB is the lessened feeling below his knee. Since Henry has spinal cord damage, the feeling below his knee is limited. It’s kind of hard to tell what he can feel, if anything: Sometimes I swear he can feel me tickling his feet. Other times, like in January, it doesn’t look like there’s much going on down there.

In January, I went upstairs to retrieve him from his nap, and what I found in his crib shocked me. Happy as a clam, Henry was lying there with blood all over his face. When I whipped back the covers, to my eternal horror I saw that he had blood smeared all over his legs, and his toes were a mangled mess.

Like this, only not as metal

Turns out, after the husband and I stopped freaking out and calmed down enough to assess the situation, Henry was nibbling on his toes like any other baby would. Except that since he couldn’t feel any pain or pressure, he just kept nibbling…and nibbling. So in our house, when Henry’s cutting teeth, we stock up on socks, shoes, and a bunch of bandaids and antibiotics. Gross.

THOSE CHEEKS

Henry also has low trunk strength and limited hip flexion. You can see it a little bit in the picture above, how he’s kind of leaning forward and folding in on himself (granted, he was like two months old in this picture, so he wouldn’t really be sitting upright anyway). The lower trunk strength issues make him a little wobbly when he sits unassisted. The hip flexion problems make it difficult for him to stand upright.

Here’s a super-scientific diagram of what I’m talking about:

So basically, if Henry were to stand, he’d be sort of folded in on himself and standing at an angle, like a little old man using a walker. This is because of tight tendons in his hips, or something. We’re trying to stretch out these tendons in physical therapy, but there’s a small chance he might need surgery to “loosen” them. (::shudder::) Our hope is that he will be able to stand and walk, relatively unassisted. He does neither right now.

Poor hip flexion, clubbed feet, and limited trunk strength. But he's SOOO CUUUUTE

Poor hip flexion, clubbed feet, and limited trunk strength. But he’s SOOO CUUUUTE

What he can do is amazing. No, he does not walk. Yet. No, he does not stand. (Although there are kids with SB I know who can stand at this point. Like I said, it’s a spectrum.) BUT — he’s starting to pull up into a kneeling position (when I’m unloading the dishwasher and he tries to pull the knives out of the silverware rack).  And best of all, he crawls all over the place. So quickly that at preschool this week, he crawled out the door and into the hallway three times before I found him and caught up to him. Dude is fast.

Crawling! Something we were told he'd never do. Take that, bitches!

Crawling! Something we were told he’d never do. Take that, bitches!

In summary, he’s doing amazingly well, and I am so incredibly proud. This is what SB looks like for us at this moment in time.

Which is to say, better than I ever thought possible.

A Henry Kind Of Update

Wow, are you tired of reading about my panic disorder yet? Let’s switch gears, shall we?

We are coming up on one year of Henry’s Spina Bifida diagnosis.

 

Last year on November 7th, during our gender ultrasound, everything changed. We learned that our precious son had Spina Bifida, and despite being a writer, I cannot convey my devastation. Or my panic. My first reaction went from no no no no not doing it lol sorry to how am I going to deal with this? Paralyzed? Incontinent? Wheelchair? Shunt? Surgeries? The possibilities were infinite and completely overwhelming. Foremost in my mind was the certainty that because my son had a “birth defect,” our lives would be miserable and tinged with sadness from here on out.

 

So, are they? Are our lives sad and burdensome and full of suffering?

 

Judge for yourself:

 

As you can see, this poor child is miserable.

 

One of the things that terrified me before giving birth to Henry was that there was really no “face” of Spina Bifida. If you did a Google images search of Spina Bifida you would see a) aborted or stillborn fetuses, b) gruesome meningocele lesions, and c) pictures of John Cougar Mellencamp because apparently he has a very mild form of SB called occulta. You can see why this was such a confusing time for us. When we’d try to “research” Henry’s birth defect on Google, there were few families we could look to as an example, despite Spina Bifida being one of the most common birth defects in the world. I can’t find it now, for the life of me, but when I googled “spina bifida stories,” the first one I came across was a little girl who had actually died during her myelomeningocele closure as a newborn (something that is very, very rare). Needless to say, I was all:

 

So nearly a year later, I am happy to say that Spina Bifida has a new “face” for us, and hopefully for everyone we know. It’s a seriously cute face that is perpetually smiling, with super chubby cheeks and huge blue eyes. I don’t know where I keep getting these blue-eyed children because my family is Italian as hell, but I digress.
I struggle with telling people what Henry can and can’t do at this age, because I fear that they’ll think of it as some unbearable hardship. Henry has had two surgeries in his young life — one to close the opening in his back, and one to put a shunt in his head, in order to control his hydrocephalus. Although he can sit up mostly unassisted and meets pretty much every developmental milestone, for some reason he still has not been able to roll over on his stomach by himself. (His hips are at a weird angle, so it’s hard for him to maneuver himself onto his stomach. It’s one of our goals for physical therapy.) He’ll need surgery and casting to correct his (adorable) clubbed feet. I’m not sure when he’ll crawl. His prognosis for walking is good, but it’s not a given. We don’t know if he’ll walk with assisted technology or use a wheelchair. But he can definitely move his legs purposefully and he has feeling in his legs and feet, which is a far cry from what our doctor’s initially told us he would be able to do.
Aside from the doctor’s visits and learning how to navigate the healthcare industry, this kid is surprisingly low maintenance. Recently we learned (for a lot of complicated reasons) that we’re going to have to start intermittently catheterizing him throughout the day. What I expected to be super inconvenient and devastating and a huge pain in the ass was really more like

Meh, whatever.

Basically, from here on out, we have to stick a tube in his pee-hole four times a day, and it’s surprisingly not a big deal at all. Funny, because when I was pregnant with Henry, the thought of catheterizing a baby scared the shit out of me. I would think about it and get cold and sweaty and immediately overwhelmed. It was firmly in the category of “things I couldn’t do.” And guess what? I can do it. I’m still practicing, and sometimes I mess up, but it doesn’t hurt him. In fact, he actually seems to like it. Sicko.
I think even now I have what I’d call “able-ist” leanings. When people ask me how Henry is, I immediately say “he’s totally like a normal baby!” I try to distance him as much as I can from his perceived defect, because I just can’t stand the thought of someone thinking he is lesser-than or deficient in any way. I have to stop saying he’s “normal,” because he isn’t. He’s got a shunt and now he has to pee through a pee-tube. But I guess what I’m trying to say is that you wouldn’t know that just by looking at him. He has a disability, but he’s not miserable. Our family isn’t miserable. Managing his disability is sometimes a lot of work, and a lot of doctor’s visits, and a lot of phone calls to the doctor’s office to get referrals, and that’s a headache. But at worst, it’s a mild annoyance.
Believe me when I say we are blessed to have this child. He has made my life better in every conceivable way. And if I had to choose between having this child with Spina Bifida and not having him at all, I would go back and pick Spina Bifida again, and again, and again.
October is Spina Bifida Awareness month, and this is what I’d like to contribute: If there’s anything you need to be “aware” of, it’s that Spina Bifida can be hard. It can be grueling and annoying and complex. But it can also be full of joy and blessings.
 It’s not easy. But it is so, so worth it.