Tattoos and Drool

So, your baby needs a helmet.

Hello to any readers I might still have after my unannounced break. I totally don’t blame any of you who pruned me from your reading list. I promise I’m still around though, and I do check in on my favorite blogs faithfully! I still need to weed through the hundreds of comment spam (do people really think that’s good for business? I mean, really?) so if you left a comment recently, hopefully I can dig it up and respond. And to the few sweet ladies who have emailed me – I promise to get back to you, even if it’s two months late. Embarrassing. I’m sorry!

Today I wanted to post about my baby girl and her plagiocephaly and helmet journey. I last left off with the announcement that she would be getting a helmet, but haven’t updated since, and it’s unfortunate because I really was hoping to document her journey better so that any parents facing this diagnosis in the future might find my blog and ease some fears. I Googled endlessly when we first found out Avonlea would need a helmet and came up with very little first hand experience, and I wanted my blog to be that source. Best laid plans and all that.

But! In this post I’m going to compile all my most important thoughts, tips and FAQs that I think will help make it a little easier for anyone else going through this. If you have any additional questions, please please leave them in the comments and I’ll add my answers to the post.

So, here it is. Everything I think you should know if you just found out your baby needs a helmet. Let’s jump right in.

• Don’t panic. Seriously. DON’T panic. I know it’s hard. I panicked like hell the day we took my baby to be fitted with her helmet. There are a million thoughts flying through your head and none of them are good. But I promise. PROMISE. It will be okay. It’s not that bad. Think of the future – your baby with his cute little perfectly round head – and that is what will get you through. It seems like yesterday that I was white-knuckling the steering wheel on our way to the orthotist on Christmas Eve, and six weeks have already gone by in a flash. And all that panicking? Totally not needed. This has been worth it.
• But what if my baby hates it? What about sleeping? This was my biggest worry. That she would cry incessantly and refuse to sleep for the entire three months. But you know what happened? She didn’t cry. At all. The orthotist plopped her helmet on her head and she totally didn’t even care that it was there. And, he told us that while some babies do cry, it’s not for long and ALL the babies he’s worked with got used to it almost immediately.

  Some orthotists will have you follow a gradual schedule to get your baby accustomed to the helmet. We didn’t really do that because she seemed fine in it immediately. The first couple days were a little rough, and she didn’t want to sleep at night wearing it. That is okay and normal. Just take it off for the night. By day three or four, she slept in it all night for the first time and it was smooth sailing from that point.

• What if it leaves marks? It looks like it’s hurting her! The helmet should not be uncomfortable or painful for your baby. It may leave red pressure marks when you first take it off, but these should go away within 30 minutes. If there are any marks that don’t go away, any skin abrasions, or your baby seems to be in any pain at all, LEAVE IT OFF and call your orthotist. Trust me. You don’t want to irritate anything worse than it already is because that would mean an extended time of leaving the helmet off, which is less time for the head to grow properly. Your orthotist can shave off some of the foam on the inside on any spots that are causing irritation.

• You will miss that soft little head. There’s no avoiding it. You will miss the skull snuggles like crazy. I miss smelling her head the most. But, it gets easier. The helmet used to get in the way but now it’s simply a part of her, and I smother it with kisses just as much as I do any other part of her body. It just makes you cherish that one hour a day so much more. (Oh, and speaking of that – you’ll take it off each day to wash it. Word of warning. The smell? Is like that of 100 sweaty feet. It’s putrid. But you won’t care. I promise.)
• Decorating. If you’re anything like me, the helmet’s gotta be cute. It just does. There are several methods of decorating. I initially had Avie’s airbrushed at a kiosk in the mall. I quickly got sick of that design though and decided to paint it a solid color with just her name and a couple stickers added. Painting it is super easy. Just get regular acrylic paint and some Mod Podge sealer. Paint on 2-3 layers of the acrylic, drying between each layer. Once you’re satisfied with the look, paint on a couple layers of the Mod Podge. This leaves a nice shiny finish and prevents chipping. Then add any stickers and Mod Podge over those as well. Vinyl stickers work much better than paper. Bling Your Band is also a great resource for custom vinyl decals created specifically for cranial helmets and bands.
• I’ve heard Cranial Tech is the best. Yeah, I’ve heard that too. Unfortunately for me and thousands of other parents, there isn’t always a Cranial Tech close by. I’ve read about parents who traveled several hours in the car or even by plane to get to a CT (makers of the DOC Band). But what I’ve found in my research is that ALL of the helmet/band brands are effective and none are really “better.” You have to make your own choice as far as if you’re willing or able to make the trek to one. Me? I went with what was local and couldn’t be happier. Avonlea is in a Becker Band and is making absolutely amazing progress. It’s one of the most little talked about brands, which worried me at first, but it really doesn’t matter. As long as you get a proper fit and a good orthotist, any brand or company is going to do what it’s supposed to. Other common helmet brands are STARband and Hanger.

  Another thing to keep in mind is that Cranial Tech makes what is called an active band. This means that the device applies constant gentle pressure to the head to help it grow properly. You may need to have more adjustments with this type of band. Becker and I think Hanger and STAR as well are all passive bands. Meaning the helmet is constructed in the desired final head shape and allows space for the head to grow into it rather than applying pressure. We only see our orthotist once a month. Both types are good, you just need to talk to your doctor and orthotist to decide which would work better for your specific situation.

• Take pictures! You will regret it if you don’t, I promise. Take lots of pictures of your baby in the helmet, as well as progress pictures of their head. You will want to compare the pictures as this is the best way to see progress. And, even though it might not seem like it now, you will want the visual memories of your baby in her helmet. It’s for such a short time in their lives and you will cherish the memories of getting through that time and coming out on top.

• Don’t be a hermit! Don’t worry about what people think. Take your baby out in public as you normally would and don’t be ashamed. Yes, people will stare. You will get used to it. For me, I just remember that by taking Avie out, I’m making this more common and more accepted. I haven’t seen another helmet baby out and about yet, but I hope to so I can make that mom or dad feel good about their choice and proud of their baby. Sometimes people ask questions (the most common being “What’s wrong with her” and “What happened to her”). I’ve even had a group of jackass teenagers make fun of her at the mall. Yeah, giant eyeroll. Just use it as a chance to spread information about plagiocephaly. I have met so many people who, after I explain our situation, say “Wow, I think *my baby/my daughter’s baby/etc.* could have really benefited from that treatment.” I also meet people who know of other babies who wear helmets.

And above all, feel confident in the choice you have made for your child. It really, really is worth it. You will never regret choosing helmet therapy, but you might regret it if you didn’t.

Okay, so that’s all I have for now. I hope this helps even just one person.

I’ll let her give you the update herself.

Hi everyone! It’s me, Avonlea.

Can you guess why I’m so happy? No, it’s not because I have the coolest mom ever*, although I do smile about that quite often. (*Disclaimer, I was not paid by my mommy in any way to mention her awesomeness. Unless you count breastmilk as payment.)

Last week I went and saw a nice lady doctor at the children’s hospital. She looked at my head and made me hold real still, which I didn’t like much. And she made me lay strapped down on this cold table so they could take pictures of the bones inside my head. That wasn’t fun either. But after all that, she told me that I don’t have to have surgery! And I don’t have to worry about that big long C word any more. Just the long P one, which means I need to wear a helmet for a little while. But that’s okay. As long as I don’t have to have any surgery!

I was kind of scared when they told me I had to wear a helmet. What if it hides my gorgeous long locks? But my mom said she would get it painted real pretty for me, maybe even with Hello Kitty, which is my favorite. So I guess it won’t be so bad. I have to wear it 23 hours a day, and from the look on my mom’s face, that’s a pretty long time. I don’t know, I haven’t figured this number thing out yet. I especially need to wear it while I sleep though, since sleeping in my most favorite position is what made my head flat.

After we finished at the doctor, we went to a place that makes all kinds of orthotics and prosthetics to have a mold made of my head. I had to sit on my mommy’s lap with a sheet of crinkly paper between us. I was pretty stoked about it at first.

Then a man put a stocking over my head and I got a little scared. He said it was to protect me from the plaster.

But all it made me want to do was turn around and snuggle into my mommy’s shoulder.

The process started and it wasn’t quite as bad as I expected. The man put a big piece of cloth dipped in plaster across the back of my head. I was nice and calm.

I got pretty mad at the end though when he had to press pretty hard on my head and hold me really still again. I really, really don’t like being held down. So I yelled at everyone to get away.

It was over really fast after that though, and I was back to my happy self! They told us we would get the helmet in about two weeks. I’m getting kind of excited about it and can’t wait to see how my new round head makes me even prettier.

Thanks for checking on me!

Love,
Miss Avonlea

Avonlea : Three Months

Avonlea, Miss Avonlea. What an interesting month it has been. When we left off one month ago, you were the picture perfect baby who was sleeping eight hours straight at night and never uttered so much as a whimper. Um, that’s changed slightly. You’ve come out of your shell and aren’t quite as timid, which means you don’t hesitate to voice your opinion once in awhile. (That’s putting it nicely – what I really mean is that sometimes you scream at me. Loudly. And sometimes it makes mama crazy. But I still love you. Plus, it’s good birth control.)

This has been the month of whacked out sleep patterns. That whole drifting softly off to sleep on your own thing? Yeah, not so much. You’re not real fond of being laid down awake any more. And we’ve had several nights where you decided to scream at the top of your lungs for no logical reason. For a real long time. And, if I’m being truthful, a couple nights where Daddy slept on the living room floor next to your swing because the swinging was the only thing that kept you asleep for more than 30 minutes. And that’s all I’ll say about sleep, because the jinxing? Do not want.

All things considered though, you’re still an easy baby – easy to soothe, easy to entertain, easy to travel with. Oh yes. You’re extremely portable and it is FAB-YOU-LOUSSSS. I remember having to meticulously plan even the simplest trips with your brother because after an hour he was spent and wasn’t afraid to let everyone in a 2-mile radius know about it. Your motto? Have Boobs, Will Travel.

You’re still a tiny little thing in my eyes, holding steady at around 12 and a half pounds. You seem huge next to your brand new 8-pound cousin, but you’re not even close to touching the 18 pounds your brother boasted at three months old. Yeah, you’re teeny. And I’m enjoying it. So is my back.

Milestones? Eh. You tolerate tummy time. You don’t really roll. Which is fine with me because the thought of teaching your brothers what baby-proofing means? Yeah, terrifying. Stay immobile for as long as you want. You are feeling much more solid and love to do these cute little ab crunches when you’re laying on your back, which we’ve taken to mean SIT ME UP NOW PLEASE THANKS. You can easily pull up to standing while holding onto our hands and that’s pretty much the coolest thing ever in my world right now.

The Battle of the Flat Spot looks to slowly be leaning in our favor. It’s still definitely there, camping out on the right side of your head, but I think it’s getting more round and less noticeable. Which is awesome because I’m totally not down with having to strap a helmet onto your head for three months. We’ve been trying to keep you upright and off the flatness by letting you hop around in a Jumperoo, which you freakin’ LOVE. Seriously best money ever spent with all three kids. We heart Fisher Price around these parts.

You’re still a smiling machine, of course. And the dimple. The DIMPLE. It’s still melting me into a puddle of rainbows and sparklies. LOVE that perfect little dimple and those amazing blue eyes. Gorgeous. Yeah, so I’m biased. But you are.

In summary, you’re continuing to be pretty stinkin’ awesome, babygirl. I think we’ll keep you.

Love,
Mama

Wordless Wednesday – Dimple

Aptly named because it’s the first thing I notice every time she smiles. OMG DIMPLE.

Avonlea : Two Months

Dear Avonlea,

You are two months old today. TWO MONTHS! Hard to believe it’s already been that long, and yet, it seems like you’ve always been a part of our family. You fit into the final slot like the last puzzle piece, absolutely perfectly.

Your smile is totally infectious and you flash it every chance you get. You’re such a happy baby when you wake up in the morning, and it continues throughout the rest of the day. You must have known mama would need a boost while chasing after all three of you, and it works – it’s hard for me to be grumpy with your gummy grin looking back at me all day.

See? Try not to smile when you look at that face. I dare you.

Your brothers are completely enamored with you. Their favorite time is when we go somewhere in the car, and when they get out, they always must first lean over the seat to see you and say “Hi, Avie Girl!” You had a short crying fit a couple days ago and I thought Sawyer might start crying himself with how concerned he was for you. They hate to hear you cry (even though it isn’t often) and always ask me if you’re going to be okay. I eat up their sweetness now because I know it won’t be long before they’re locking the bedroom doors behind them as you try to keep up.

No big milestones to report, unless you count kind of starting to lift your head during tummy time. You aren’t close to doing any baby push-ups yet, but at least you’ve stopped dragging your face along the carpet and whining to be flipped back over. Other than that, you’re pretty happy with wherever we put you.

You don’t nurse NEAR as much as your brother did, which is both good and bad. Good because I don’t feel like a human dairy case, but bad because it means I’m still hanging on to about 25 pounds of baby weight. Yeah, apparently the more you nurse, the more calories you burn. So it looks like I’ll have to do some real exercise for a change. You’re also more petite than he was – official weigh-in today was 11 lbs. 7 oz. Everyone else keeps saying you’re big, and it makes me defensive because you’re my smallest baby by far!

Bedtime with you is such a breeze that it’s almost scary. Daddy and I give you a bath after your brothers are in bed, and then you nurse for a final time around 9:30. I tuck you into bed groggy but awake, and you drift off peacefully. Wake to fill your belly around 4:30am, and then back to sleep again until 8 or 9. Have I told you how much I love you, little girl? Mama appreciates the sleep.

You have us all completely smitten and all it takes is a hint of the Pouty Lip to turn us to mush.

Yeah, keep perfecting that one and you’ll have Daddy’s credit cards in your pocket by the time you’re five. What can I say? You’re learning from the best.

Keep being completely awesome, baby girl.

Love,
Mama