Wednesday, May 6, 2015

Life with a Helmet, Part 3

We are approaching the third-month mark on our helmet journey for our little munchkin. I haven't done an update because well, to be honest, I'm so disappointed. I thought for sure Elizabeth would be out of the helmet within three months and it just is not going to happen.
We started in February with her number being around 97.7%. That's pretty high for Brachycephaly. Not severe, but definitely moderate. At the beginning of treatment, her orthotist wanted her to go down to around 90-91%. Then he changed it to 89-90%. Right now she's sitting at 91%. She's been around 91.7% for a while and then at our last appointment, she went down to 91.0%. But that's not enough for her to finish and end treatment yet.
Here's some progress pictures:
This was after one month.
April 26th.
May 2nd.

It's a tough pill to swallow.
We've done everything right - she wears it 23 (give or take) hours a day. Some days it might be off a little bit longer. Some days it's off a little bit less. We keep our eye out for red spots and/or pressure sores. We make sure it's on straight. We make sure that the velco is tight enough (but not too tight). We go to physical therapy. We go to the chiropractor. 
So then why aren't we done yet? Why is her head not growing fast enough? Why are her numbers not going down at a faster pace?
Who knows! No one knows the answer to those questions and that's what is making me crazy emotional.
I've been ROCK SOLID this entire time. Well almost. 
Monday night, as we went to put the helmet back on our sweet little Elizabeth after her bath and bedtime bottle, I noticed a small scratch on her right cheek. The scratch wasn't completely open, but in "helmet land" there are rules. 
Fever?  NO HELMET.

Red spots? NO HELMET.

Open cuts? NO HELMET.

I legit lost it. I mean full on Kim Kardashian ugly cry. 

Why though?

Well for one, I'm a rule follower and her not wearing her helmet gives me all sorts of mama anxiety - what if her head grows over night? What if she doesn't heal over night? What if she doesn't tolerate the helmet in the morning? Will her orthotist be able to figure out that she didn't wear it for a night?

And for two, just seeing her head without the helmet sends me into a whirlwind of emotions.

When we were discussing the option to go for the helmet, I knew something was wrong. I knew her head was wider than it should be. That her forehead was bossed. That she needed the helmet. I didn't cry once at any of her consultation appointments, scanning appointments, and there wasn't one single tear the day she got her helmet. I'm thankful for modern medical technology that we are able to fix her head shape so she won't have issues later with bicycle helmets, glasses, etc. I was in mama bear mode and I was just looking out for my little cub.

But seeing her without the helmet overwhelmed me. The progress is mind blowing. It's amazing.
So then why the tears?
Because I don't her beautiful hair to be covered by the helmet anymore. 
Because I don't want her to wake herself up in the middle of the night when she moves into the side of the crib and the knocking of the helmet wakes her up.
Because I don't want her to pull and tug at the helmet.
Because I don't want to worry about if there will be red marks on her head at the end of the day when it's time to take it off.
Because I don't want to worry if daycare is keeping the room cool enough for her.
Because I don't want to worry that if she gets a teething fever, we'll have to take the helmet off. 
I know. I'm being selfish. I am. I admit it. 
But my goodness, she is such a beautiful baby. Too beautiful for a helmet. Too beautiful for the stares and the "aww, what's wrong with her" looks. Too beautiful for people to say "poor baby". 

 Doesn't seem to mind it one bit!
I know in the grand scheme of things, this is just a moment in time. A time that she won't ever remember this. But, as a new mama, it's been a tough pill to swallow lately.

Even family, friends, and colleagues all comment on how great her head looks.
Hearing this just makes me get all sorts of emotional. I can't help it. It's been SUCH a journey. All the appointments with the orthotist, the tears JB cried while we tried to get her to lay still for literally TWO SECONDS so they can scan her head to get accurate measurements, and the stress of dealing with the helmet and everything that comes with it. 
So what's next?
Well, May 11th marks the third month in the helmet. Honestly, we could have ended treatment but the orthotist seems to think more progress can be made, so officially ending was strongly discouraged. We are getting close to her nine month growth spurt and this is a big one. We're hoping it does wonders for her.
But really, she's already perfect in our eyes.
We're just waiting for the cranio-facial surgeon and the orthotist to say she's "close enough" to normal in their eyes.
So, I will continue to pray. To pray that we are nearing the end of this helmet journey. 
I can't wait for helmet-free snuggles. 
I can't wait to snap pictures without the helmet.
I can't wait to play with her hair.
I can't wait to put bows in her hair. And headbands. 
I can't wait to be able to take her outside and not worry that she's getting too hot.
I can't wait to be done. 
 Mama wants to give her a 
pony-tail every morning!

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  1. She's beautiful. With or without the helmet she's beautiful. I really hope and pray that she doesn't have to wear it too much longer.

  2. She is absolutely beautiful, but I am sure this is a hard thing do deal with. You'll get though it and everything will be fine, just look at her and see how happy she is and it will help calm you.

  3. Hang in there- she is so beautiful with or without the helmet. Just take it a day at a time (some days will be easier than others) and remember this is just a blip in her wonderful life. I bet she'll be much more open to wearing hats once she's done with the helmet. My 10 month old hates hats so much which makes me dread the upcoming summer.

  4. She's beautiful! I can't imagine how hard this is to go through. Like you I'm such a rule follower so I can totally get how it would cause anxiety. Praying for some positive results!

  5. Hello Brave Mummy, Lauren! You are strong and inspirational and you have got an absolutely beautiful little lady who seems to have your gutsy attitude to "getting on with it" when it comes to the helmet. I am not a mummy so I don't have a parental side to understand what you are going through however I worked in a special school and some of our children had helmets. We had to take into consideration all of the "issues" you have mentioned (temperature, pressure sores etc). In my experience, children like your daughter grow up to be tough little cookies. She WILL come through the helmet stage in her life and she will have cute little pigtails one day. Think of all the hair clips and headbands you're going to have to buy! As for those people that stare now, it's a reflection on them and not on you or your family! This chapter will end and the rest of the book is not yet written. I hope it's filled with love and laughter. xxxx

  6. She's so beautiful! You're awesome, she's a lucky girl

  7. Aw, hang in there! Your baby is beautiful and you are doing the best thing you can, loving her no matter what! Keep strong and like you said, in the grand scheme of things this isn't so bad. Things could be worse, take it a day at a time and soon enough you will both come out strong on the other side of this!

  8. You are not being selfish, you're just being her mother. You love her and don't want her to have to deal with it anymore.
    She really is a gorgeous little girl regardless, and it really will be over before you know it! I just can't get over how much hair she has! All of my childrens hair has been so fine, I would think that being in a helmet so much would rub it off of them in certain contact points. You are all doing awesome!

  9. She is such a little doll! Sending you happy thoughts and well wishes that it all works out as quickly as possible!

  10. Your baby is such a cute bundle of joy and she looks so happy, undoubtedly you are doing a great job. I hope the agony of seeing your beautiful girl in a helmet ends soon. I know it will be over before you know it.

  11. One day, helmet time will just be a memory!! Life happens so fast, and it is funny how something seems like it will last forever, and then all of a sudden it changes. She is beautiful, with or without the helmet! :D


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