"I'm just curious, Ben and Sav's head looks very normal and chunky.:) Just wondering why they have to have one of those helmets if their heads aren't narrow like Drew and Ethan's?"
Thanks for your question, I will try to answer as best as I can without getting too technical or medical.
Savannah actually had the worst asymmetry of the bunch. She had significant cranial vault asymmetry...notice the flattening of the right side of the back of her head...this is known as Plagiocephaly. Her front right forehead protruded--which could cause depth/perception problems if not corrected. (Keep in mind, these babies look different in person than they do in pics.)
I think this is a good representation of Ben's narrow head before treatment. Ben had biparietal narrowing with anterior and posterior asymmetry...also known as scaphocephaly. The back of Ben's head actually came to a defined POINT...it was very interesting.
These bands are anything but cosmetic! Our neonatologist was the first person to recommend these when the babies weren't even out of the NICU yet. She could tell that there would be structural issues. We followed up with our Pediatrician who specializes with multiples and she concurred. Finally, we were seen by trained professional who gave us specific measurements, etc. These babies had very soft skulls that were not able to harden while in the womb, seeing as how they were born 2.5 months early. There was also significant crowding in my womb that caused structural deformities with their skulls...we did not want our babies to have to go through cranio-facial surgery to repair cranial plate separation down the road.
So, after many prayers, Joe and I decided that for OUR BABIES, this would be the best treatment...and it has been amazing to see the differences...even after the first 5 days!! We are thrilled with the results and the babies are doing great! They don't even flinch when we put the bands on their heads! I'll be glad to answer any more questions on the subject...I know it is very interesting.
56 comments:
I have been keeping up with your blog for sometime now. First let me say that I think you have some of the most beautiful kids I have ever seen. They are lucky to have parents that would do ANYTHING for them. Ilove the newly decorated helmets. They are precious. It is so sweet how you took time to do each one's hat differently according to their little personalities. You and Joe are awesome parents!
I still can't believe how insurance won't pay for these bands. Makes me angry but hopefully people like you and Joe can help change this problem.
I'm with leslie a. above..have been following your blog since before the wonders arrived (via the Murray Crew here in Indy)...you ROCK, Suz! Everyone needs a mom, friend, daughter or sister like you...your babies are so precious and I pray the Lord continues to bless their growth and you and Joe as you make it all look so easy!! You are inspirational!! God Be with You!!
Laurie
Was it that YOUR insurance would not pay for the bands or ANY insurance will not pay????
My daughter may need a band when we go back for her six month check-up. Her head is flat in the back and she favors one side so it is worse on one side.
I have some pictures of her on my blog but as you said the pictures don't quite show what they look like in person.
Your babies are just beautiful and I enjoy reading your blog. Any feedback on what to expect would be wonderful.
Suzanne - thank you so much for being so upfront about this with readers. I have b/g twins and my Princess Addie Mae will prob need a band as well. They want to watch her until 6 months but her head looks just like Savannah's. I wish that they would allow us to get on this now. I also appreciate you posting the pics, etc. I know that we will get tons of stares and that a lot of people will think it is a result of lazy parenting or that we want a "perfect" looking child. Which could not be further from the truth! Addie's ear on the side that her head is flat didn't even develop - there were only two in my - but her brother crowded her out! I want to find stickers that says - "My brothers are rough" - or - "Go ahead and stare - I am SO cute!"
Thanks for bringing this up and for being so great with your responses!
Lisa in Phoenix!
www.theeggebrechts.com
Oh wow- never noticed the head shape in that photo before! Amazing what modern medicine can do. Don't be defensive! Even if it was cosmetic, you want them to grow up looking just as 'hot' as the kid sitting next to them, and if a little piece of foam gets them that way rather than surgery, I say go for it!
You're a great mama! Don't sweat it!
Just from a teacher's point of view, your children will definitely thank you for the bands some day!! In addition to the important health risks associated, you're saving your kids from years of torment from mean kids that always seem to pop up no matter how much we try to prevent it.
You're great parents and your children are beautiful, no matter what they're wearing! =)
alice- hey woman! sometimes, no matter what you do...you JUST can't keep a baby from going to their "favorite side"...it is frustrating.
insurance- most insurance companies WILL NOT PAY. they think it is cosmetic. there are only a handful that will (sorry i don't know which ones)..when they found out we had united healthcare (before they even tried to contact them) they knew they wouldn't pay. but we are fighting them...so, maybe it will pay off. there are acutal cranial tech staff whose sole purpose is to help you fight your insurance--that is their job! they give you information, sample letters, court cases, etc. it definitely can't hurt! but there are payment plans available...aka, just like buying a car! ;) (of course it is MUCH cheaper for one baby...$3,300 per child...in case you were curious)
feel free to email if you want to speak more in depth! suzsteece@hotmail.com
As always, Thank You Suz and Joe for so openly and generously sharing your personal life with all of us! This is a very interesting subject, and I appreciate the opportunity to learn more. God Bless You All!
Bless those doctors that knew what those babies needed. Bless you and Joe for DOING what needed to be done.
Your family is on my heart daily.
God Bless you ALL!
I think it's amazing that you can see the difference already. I was so happy to see this update! I follow along with your crew often :) God bless you and your family!!
Jennifer
memoirsofprinces.blogspot.com
I think the bands are cool! When they are teenagers it will be neat to look back at how little their heads used to be. You all are awesome.
Sandi(fort worth)
I'm glad things are going well and that you can already tell a difference. :-) You are doing the best thing for the babies....
I'm glad for th information you have provided. Before whenever I saw a "band" I thought "how awful that the parents are worried about their child's head shape." I'm sure there are parents that do it for cosmetic purposes, however I nowe know that there are medical reasons. Thanks!
P.S. I found your blog looking around on blogspot, I have enjoyed your journey thus far and look forward to watching your miracles grow.
I'm glad for th information you have provided. Before whenever I saw a "band" I thought "how awful that the parents are worried about their child's head shape." I'm sure there are parents that do it for cosmetic purposes, however I nowe know that there are medical reasons. Thanks!
P.S. I found your blog looking around on blogspot, I have enjoyed your journey thus far and look forward to watching your miracles grow.
Hi Suzanne! My friends passed your blog onto me. My son, who is 6 months old, just got his helmet yesterday! It covers his full head and he also favored laying on his right side when he was younger. He doesn't seem to even know it's on his head, which is great! It's so nice to read your post and see your journey through this also. Walker's helmet is blue (bright blue!) and I'd love to add some cute stickers,etc. to it. Where did you get yours? Scrapbooking stores?
Thanks again and I look forward to keeping up with your beautiful family!
Have a great day,
Erin Kirkland (Atlanta, GA)
www.walkerkirkland.blogspot.com
Suz-
I think it is great that you doing this for you babies, however, I'm very confused. Do their heads slide around in their helmets or are they like taped to their forehead? I'm sure I sound like a doofus, but I'm just curious at how the bands keep one part from growing while allowing another part to grow. Just curious! :)
erin- that blue band is AWESOME! walker is adorable! yes, any scrapbooking store or michaels, hobby lobby, joann's, etc.
katelyn- it is hard to describe. on the inside of the helmets, there is a firm foam material that is shaped and molded to their exact adjusted cranial measurement (which they adjust for the steece quads once every week, based upon their growth patterns). i don't know how they do it, but yes: it keeps certain areas "still" while allowing other areas to "catch up"...thus rounding out their skull. very technical!
I just wanted to tell let you know that a post was made on my pregnancy board from a woman saying if anyone had time to read check out this couples blogs. I was bored and looking for something to do so i came to your site and started reading from the very first blog you wrote in sept 05. I could'nt stop. I spent nearly 2 1/2 hours reading your story,looking at pictures and watching videos. I went to work today at the childrens hospital here in ft myers fl telling everyone about it. I fell in love with you and your family. You honestly inspired me and i just wish i could be as happy as you look on a normal day on my happiest day. I find you to be an amazing person and gorgeous as well. You and your beautiful family will never be forgotten in my mind. I will continue to check in on you. Congrats on the new babies and am thinking of starting a fund to donate to your family at my hospital. I have a 5 year old and a little one on the way so i know how expensive baby's can be.
Thinking of yours,
pearly
forgot to mention that people come from ALL OVER to have this done. the other day, i met a couple from mississippi that FLY in every TWO weeks to have their child's band adjusted! thank God we live 35 minutes away from Dallas!
it is also funny to watch the expressions of peoples faces as we walk in with two double strollers. you can see them doing the math in their heads "1...2...3...4..." it is SOOOO funny! then you see them doing MORE math in their heads: "$...$$...$$$...$$$$"! ;)
pearly- good GOSH! talk about a NICE PERSON! sheesh! thank you so much for the encouraging, sweet words!...means so much to me! i'm so glad that people have found encouragement and laughs from my blog! its so funny to think about...i just write in my "online journal"...and somehow give people inspiration? it is humbling and definitely GOD working through all this! thanks again for the shout out!!! much appreciated!
Wow those are beautiful photos and of course babies. You are doing such a great job. You seem so together and calm. I am so impressed. I only have two and I am ripping my hair out. You are a real inspiration.
Suz-
I loved seeing those photos again. Seriously, your kiddos are adorable and you and Joe are fabulous parents! Really!!! Since we are such good "friends" now... hee hee!... what I really want to know is what hair products you use! Really, your hair in those pics just looks so fabulous! :) Since you surely think I practically stalk you, I thought I would go all out and ask. :)
Suzanne,
I really hope that you will win your case(s) with your insurance company. Fighting for insurance coverage for cranial bands will not only benefit your family but it will make strides toward coverage for all families in similar situations. I can see God working through you and your babies in so many ways...it's just awesome! I have one question regarding the bands: How do they determine how long the babies have to wear the bands? Is there a certain amount of time that it takes or is it different for every baby?
Suz~
You have done such a wonderful thing for YOUR BABIES! They will thank you for helping them shape their own little heads just right! So glad you can see an improvement already!!!
Insurance pays for braces, it should pay for these!
I've been googling things about the DOC Bands trying to understand the controversy surrounding them....and I"ve found nothing but extremely positive feedback. What is the controversial part that you talked about earlier?
Suz~
Wow, imagine my surprise when I came to check on your blog this afternoon and saw my name made it on the blog page "Answer for Heidi" I feel like a celebrity has just talked to me.:) Thank you for caring to answer in such a honest and respectful way. I didnt question what you and Joe were doing at all, just knew there was a reason, but since they didnt appear to have the narrow face like the other two (from pictures), I couldnt figure it out. So... when I cant figure something out... I go about bugging people like you, just so I can learn and satisfy my curious mind.:) I so appreciate your answer. Wow, I never notice that before on them until you showed the pictures. Thats so amazing. YOU will NEVER regret paying for the "car" you never got.ha.
I want you to know Im a deaf mom, and my folks did everything they could for me to help me into the hearing world. They let me try a cochlear implant (very expensive), and to this day I feel so loved and appreciative for all they did for me, even when it was so costly. And to make a long story short... I didnt like the implant and dont use it.
I know your kids WILL tell you some day how grateful they are for all you and Joe did for them,even when ins. wouldnt pay for something like that. And when they do realize all you did for them, they'll forever know you are parents who care and love them deeply. Ill say extra prayers for you so that your fight with the insurance will be won! :)
Now that Ive typed this much, Ill go a bit futher....I joined your blog back when Tiffany Ross ( I used to work with her) started her quad blog. I read every single one... yeah, it took me a good couple days since my kiddos like to interrupt me. Anyways, it was just too amazing and inspiring not to read each one. Thank goodness Im caught up.:) I always wonder what their cries and cooing and laughs sound like, but I still find it so delightful to follow along. Probably because you are so positive and continually loving every min of your babies life. Keep it up....
And by the way.....now that youve got my name... Im the one who asked how you can tell Drew and Ethan apart. Yeah, quite embarrasing, but glad you got a laugh.
Well, this is long....ill save room for others.
Thanks again for being a friend who cares, even when Ive never met you.:)
Heidi
I love this post!!! My nephew had to wear a band and I cannot tell you how many people made my BIL and SIL feel like they were shallow parents because they assumed it was only cosmetic! Its NOT! My nephew had some of the same issues as your little ones and the band corrected the problem and made such a big difference! Your babies will thank you for this when they are older! And, just wait...when they get them off its hilarious because they forget they don't have protection on their heads anymore and bump them on things for a few days! :) It took a few days for my nephew to realize that he couldnt just knock his head around everywhere! LOVE your blog...you are an amazing inspiration to us multiples moms out there! And, I still think your boys should date my girls when they are older! :)
I have been following your blog for a while now and your on my favorite link list. I think the bands look awesome.
Our 3 year old wore the helmet from 6-9 months. It is really amazing how great it works. With in a week you can tell a big change. We look back at pictures and see just how much his head benfited from it. You are doing a great thing. I promise it will help.
Love the Blog.....
i have NO idea how i found your blog, but i am so glad i did! my husband has been making fun of me bc i have become obsessed with your blog! last week i read all the months leading up to the babies birth and now i am all caught up! i promise i am not a stalker! (i kinda can't believe i am leaving a comment) anyhoo, i have loved reading about your journey. it is so encouraging to see how the body of Christ has come together and supported you through this. i love the "share the care" idea. pretty neat!
i think you and joe are doing a fabulous job and i too am excited to see these precious miracles grow! thanks for letting us see a glimpse into your life!
i just realized that i too am a "suz and joe"!
suzanne - i'm an occupational therapist in memphis (who also knew you from a distance at harding) and have also been following your blog and praying for all of you. i work in our NICU and birth - 12 month nursery and i would say 90% of my babies have some degree of plagiocephaly despite all of our best efforts at prevention. i'm going to a course this spring to learn more about prevention and treatment, including cranial banding. thanks so much for being open about everything. i've learned so much and can't wait to see the end result. i love keeping up with your family. ashley (hodge) kink
You seem to have quite the harem of "blog stalkers," and I should be included. :) Who wouldn't want to see 4 of the cutest babies ever?! I showed the cranial bands to my husband who is in medical school and he thought they were fantastic, though he'd never heard of them (he's only a first year). Since he didn't know about them, we researched a little and all the pictures we found showed symmetrical bands. We were wondering why all four of them have the extra material on the right side...were all the heads similar shape? I understand that this is quite technical, so if you don't know, no worries!
Thanks for the info Suz. It IS a very interesting subject!
The babies are so cute and growing by the day! WOW!
Having been through this myself I want to say take tons of pictures. It was absolutely amazing to see the differences and really rewarding. I never questioned our decision once when I saw that. You are totally doing the right thing. I can see the issues you mentioned, they do look more minor in pictures but I know in person how it looks. I do also agree that being a preemie and the inevitable crowding of a multiple birth are both big factors that can cause this. Focus on that with your insurance. It will be your golden ticket. That and the visual stuff you mentioned in your post. Best of luck!
Think of all the parents you are educating too. It's really left untreated way too much. In my opinion atleast.
You are doing the right thing for your sweet babies. I was going to link you to another blog so you could read for yourself about a Mom who has 4 yr old twins and one of them is having surgery because his head has fused. She is feeling a lot of guilt because she did not do anything when he was younger. (Doctors told her there was nothing to worry about but have now changed their tunes!) The twin has that same narrowness about his head that Drew and Ethan seem to have. Anyway, you will have to do with my telling of the story because the blog went away (it was there yesterday, don't know what happened) I know this other Mom wishes she had done the helmets for her twins! Your babies are just precious and you are such a great Mom!
Thanks for educating all of us on this. I haven't had children yet, so I'm not familiar with many of the things that can come with babies, like cranial bands. I had seen children wearing them in stores, but did not know if it necessarily indicated a major problem or condition. It is so nice to know more about cranial bands and why they are used. I saw an adorable baby girl at Home Depot last weekend sporting a cranial band and it somehow felt really nice to be someone who knew what it was and what it was for, rather than someone who looked and wondered. I can imagine that one aspect of using a cranial band that might be difficult is getting looks from strangers and the more people who understand cranial bands, the fewer stares parents and precious babies will have to endure. Thanks!
Thanks - Suz for posting this. Looking at the pictures, I really hadn't noticed anything unusual about the shapes of the babies' heads. I couldn't fully understand your decision for the bands. Now that you have posted and pointed out what to look for - I totally see it.
We love your blog so keep posting!!!
KS Dallas
Hello! You don't know me but I have been reading all about your family for a while now. I think I found you guys from the Ross Quads(who were born very near our home town, at the same hospital our son was born at)....anyway,
I just wanted to finally post a comment to tell you what a beautiful family you have. Your children are so precious and you seem very diligent in your work with them and I'd admire that.
I too have a preemie. Jack, born at 24 weeks, weighting a mere 15 ounces. He is 2 now and is CRAZY!!!! you have much to look forward to, but cherish the baby phase...hahah.
Good luck to you and I will try to keep up with your updates. If and when you have time, you could check our our little peanut at:
www.jackmatthew.com AND http://jackmatthewpeanut.blogspot.com
in God's name
Lindsay Bowling
You already know this but I totally think you and Joe are doing the right thing. I can't believe what a short time they have worn them and already a difference. I can't wait to see you guys next week--I need my quad fix!
guys...i am just AMAZED at the generosity of the human spirit! i i have the BEST blogger buddies in the world! you guys are incredible and i'm so honored that you enjoy coming to my site to read up on our crazy but blessed lives! thank you so much for your positivity, prayers and inspiration! even those of you who don't comment! thanks!
jodi- woman, you crack me UP! in those pics i used a straight iron, and sprayed a tiny bit of hairspray, just to calm down the crazies. funny, b/c i had been without a haircut since we had been in the NICU and it was hideous to me (in the back especially)
hillary- the length of time to wear the bands is very individual and specific to each child. the older they are, the longer they will have to wear the bands and it will usually be adjusted every 2 weeks. now, b/c the quads got them at 5 months (they were fitted when they were 4 months which is VERY EARLY), they are growing so fast and need to be adjusted every week...they were thinking we might have to go every FIVE DAYS! (thank God once a week was fine!)
emily- well, controversy in that i have had some negative comments from people who opted NOT to get the bands for their children...also, some people view bands as lazy parenting, now that we have to put children on their backs to sleep, there has been a GINORMOUS increase in the statistics of babies with flat parts on the backs of their heads who have to get the bands to correct their flat heads. (which can be viewed as a cosmetic procedure with no structural damage)
susie and joe- too fuuny! you guys must be AWESOME to have names like that! haha ;)
kara- good question! they have more material on the right side of their bands, b/c they all had some degree of flat spots on the back right side of their heads..which caused their right forehead to protrude. they favored turning their heads to the right, which contributed to their deformity. the material in the front of the band keeps that part of their skull from protruding any further..so the left part can grow and join up to it eventually. (not very technical, but hope it helped!) it is different for every child!
Thanks Suz. I'd do it for my child. It just seems ridiculous not to if it's needed!
Suzie,
I have been following your blog for almost two years now. I found it through a friend of a friend of mine's blog and have been fascinated ever since. You have an amazing way of capturing life in a candid way as it happens (even before the quads were born). In my humble opinion, I think you should write a book on your experience as a mother of quads. You have more insight into life, God's influence, patience, meditation, and trust than anyone I've ever known.
I am a young, single woman who is hoping to find someone to start a family with someday. You provide an amazing model as to what I should strive for. I am constantly amazed at your faith. And even though I don't consider myself to be very religious, I know that I can learn your experiences with your faith in God. Please continue to update us even though I know you are very busy. You may not realize how much your blog posts provide to so many people.
You have some of the most beautiful babies I have ever seen. I hope they continue to grow and prosper with you and Joe's love. Y'all are model parents!
Best of luck to you.
Sincerely,
Meredith (native of Baton Rouge, LA, graduate of Rhodes College)
University Of Pennsylvania
Graduate Student
Insurance will not pay? Thats ridiclous i doubt any parent would put helmets on there kids unless they really needed them. I love the decorating you done on them
Suz and Joe,
You are doing a great job and the your pediatrician is the best. She will not recommend something unless she feels it is necessary. I can not wait to see the finished results.
Deanna
Suz,
Recently I have been getting back into my hobbies of graphic design and pairing it with blog layouts. I was bored last night and looking for something to do so I made a header for you blog and I'd like to share it with you. I couldn't find anywhere that lists your e-mail address. Can you e-mail me so that I can e-mail you back the picture? Hope you like it!
Well, girl, glad I can give a few laughs. I know all us Mommies need a few laughs every now and again! :) Probably laughing more AT me than WITH me seeing that I spend way too much time on blogger. But hey, I get to "meet" amazing people, and I consider you and your family absolutely amazing! :)
Well, I use a Chi iron on my hair with as much goop as I can find to get it that straight and shiney... never looks like that! Kudos to you and your sickeningly gorgeous hair! Hee hee! :) You used to live in Houston, right? I mean, it is impossible to keep hair straight in this humidity. Oh well... makes me miss the Metroplex.
Kiss those babies from their crazy friend Jodi!! :) Oh, and thanks again for contacting my friend Hollee about her triplets. Christian Community is such a fabulous gift of God, and I love when technology even broadens it! You're a peach!
I have been an advid reader for months and was wondering if I could put your blog as a favortie on my new blog page - I know so many of my Christian friends who would love to read your journey....
ok, so now that i just invested 2 hours reading your blog, i HAVE to leave a comment! i'm totally procastinating tonight with work i need to do, but i had to keep reading to find out how your first learned you were having quads!! then, i decided i had to keep reading to the END! the part about having to give CPR to 1 of the babes...oh so scary! i took a CPR class, but watched the video anyway. and the pic of the unborn babe having surgery?? wow! anyway, a friend gave me your blog after i blogged about my 8 mo old son getting a helmet. we pick his up on tuesday. im nervous about it, but i know its for the best. so glad your babies are doing well. god bless you, girl. :)
courtney
bham, alabama
I've caught up. It's 3am my time and I have to go to work in the morning - ug! But I'm all caught up. You've got such an amasing family! I sure will add the Steece family to my prayer list and look forward to keeping up to date with your blog. (I can't do this all day read again!)
I notice that you are approching a million hits on your blog!
Hi! I've never left a comment before, but the cranial bands really interest me. I was born a premature baby, and I never really understood why the back of my head was flat. Luckily, I don't have any serious side effects.... but it can be uncomfortable physically... it's hard to explain, may sound trivial and I'm still self conscious about it. But you are 100% in doing the right thing! I don't think they had that technology in '82! You have an amazing family and your faith is an inspiration to me as a Christian. God has truly blessed you! Thank you for sharing your beautiful journey! By the way I graduated highschool with Dan and that's how I found out about your site!
God Bless,
Cara
Hi all, Suz you think you are blessed to have the best bloggers, hmmm let me tell you it is us the readers whom are blessed, to be able to come in here and share your beautiful family time and time again. I don't know about you other readers but I do know, my heart skipped a beat when you went into have these babes, again waiting to see they were all ok, again when you Suz were unwell and looked so terribly pale, again anxiously awaiting the quads coming home, again when the boys had their ops, AGAIN THIS A BIG ONE reading about Sweet Sav and your CPR, ... I have read from the start and laughed and laughed, skipped many a beat and bitten many a nail awaiting news. We are so blessed to feel this way and to read your journey - You bless us, You and your entire family. I love your blog, check in (ok I confess about 3 times a day) - quickly open all the moneylinks and then relax and read ... Even if there is no update well (another confession) I read the old stuff. SO Suz, Joe and your babes thank you for blessing us! Marie (all the way away in New Zealand)
I probably should not care one bit about this since you and I do not know each other. BUT... I am hoping that any negative comments that you receive, are politely deleted and put into the cyberspace dump somewhere. No need to clutter your sweet life with negativity. I am sure the days are not as perfect as the blog seems, although I am sure it is pretty darn close. The babies are incredibly blessed little angels!
I hope you know that anyone who gives you negative feedback about the bands should be pitied because they are obviously uneducated. If it is from a parent who didn't do the bands for their child, then you can imagine how guilty they must feel when their children have to have surgery. I am the mother of a daughter with advanced developmental delays and ADD. I can't tell you the number of times and the number of ways that I have been criticised for my "lazy parenting", when in reality, I have to work 10 times harder with her to come close to typical than the average parent. Never question your instincts as their mother. God gave them to you and you should always trust them! My neighbors have 3 sons that would have all greatly benefited from the bands, but I don't think they were around at that point. It is so sad to see these boys get made fun of, have surgery after surgery and still no real progress is made. I think a month or so in a band is much better parenting. Keep up the good fight, your doing great!
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