Happy Cranioversary - 1 year post op

When I first found out Alice had Craniosynostosis, I was a mess of course...I couldn't believe my little baby had something wrong with her. I thought that was a horrible feeling...but it doesn't even compare to the day my baby had to have surgery. It was the most heart wrenching and emotional thing I have ever been through. Handing my 5 month old baby over to strangers...and watching them walk down the hall with her...knowing that they were about to drill into my baby's skull...I can't even put into words how hard this was for me. It took every ounce of energy I had not to collapse..I have never been so scared. I cried like never have before...I couldn't stop shaking. I wanted to be with her...I wanted to hold her. Fears took over my thoughts. Would she make it through the surgery? Would she be the same sweet Alice afterwards? Being away from her for those few hours seemed like eternity. I literally ran back to recovery when they called us...and when I saw her there...white as a ghost, laying limp...I think I literally didn't breathe for a couple minutes. I knew she wouldn't look great...but she was so unresponsive, I knew she wasn't in the clear. Was she going to wake up?

After 5 long hours, she did. The strength she showed as a 5 month old baby, amazes me. My sweet girl had a whole drilled in her skull, a strip of her skull was removed...and she was smiling a day later...even with one eye swollen shut. Really?! 

I am so amazed and proud at how far she has come. I am forever grateful that Alice had the opportunity to have the endoscopic procedure, no matter what her future holds, I know that it was the best choice for her.  

My sweet Cranio Princess,
one year later

I know the worry that I feel in my heart everyday is something only a cranio parent will understand. I don't think I will ever stop worrying about her. I thank each and every one of you for your thoughts comments and prayers over the last year. I read through all of them recently and plan to print them out to show Alice one day...so she will know just how many people prayed and cared for her.

One Year Post Op
What a difference!

Here is the link to my detailed blog post about her surgery
http://coronalcraniosynostosis.blogspot.com/2013/07/surgery-story.html

This is a short video I made to help raise awareness and spread the word so that more babies can be diagnosed earlier. Please share this with your friends. https://www.youtube.com/watch?v=FaZ6SzCXDXU&feature=youtu.be

How Far We Have Come!

On the way to DC

As May, June, July approach...I must admit I feel more emotional than I thought I would feel. I am in awe of how far we have come! Last May I remember getting the referral to a neurosurgeon...and then the beginning of June is when we saw the neurosurgeon for the first time...and heard the word Craniosynostosis for the first time. And then July...fighting insurance, waiting for what seemed like eternity and then getting the green light for surgery. It was such a whirl wind of events. I was a wreck, for sure...but I had more strength than I thought I did. I look back and wonder how I didn't just crumble and fall apart. A friend of mine, who I met through a cranio forum, who's child also had the same type of cranio and same surgery shared this with me. It has been so nice to talk to her through this journey...

This is so perfectly fitting for our cranio journey

We traveled to Washington DC today for Alice's followup with her neurosurgeon, Dr Magge. I think every parent who has a child with Craniosynostosis can relate to the nerves that come with each appointment. The construction and traffic on the way up didn't help the nerves at all.

My husband and I had some questions going into today's appointment...so we were eager to hear what Dr Magge had to say. Alice is on her 2nd helmet. She was in her first one just under 3 months...and has been in her current one for almost 8 months. The plan was for Alice to stay in her helmet until around 18 months of age. So with her being 16 months old now...we wondered how this would play out...whether she would need a 3rd helmet or not. See, when you first get a new helmet, they are somewhat large and need lots of adjusting to make them fit right...so in my opinion, you don't get alot of change in the beginning of each helmet...you notice the most improvement when they are snug, like Alice's is now...which is why Hanger was reluctant to order that 3rd helmet. Being as that we already owe Hanger right much money for the helmet she is in now, Dr Magge thought it would be silly to get a new costly helmet when she would only be in in for a month maybe. So....
Dr Magge said she will stay in this helmet until she outgrows it!!!! Which could possibly be earlier than 18 months...although we really want her to make it to 18 months to get as much improvement as possible before the end of helmet therapy.

Playing after a long car ride home

Dr Magge did tell us in the beginning that because Alice was on the older side when having the endoscopic surgery, that her results may not be as good as a younger baby. But we were willing to risk that...because we wanted this surgery for her. But Dr Magge seemed VERY pleased at how Alice looks and her results so far! We then starting discussing some pros and cons to both types treatment for Craniosynostosis (CVR and endoscopic) I told him my view point about how I see what endoscopic surgery does...and how I feel it stops Craniosynostosis in it's tracks...and stops any physical distortions. When the strip craniectomy is performed and that suture is released...the skull starts to grow as it should be. The nasal and mouth deviation that Alice had before the surgery, was noticeably improved within a short time. For Coronal babies...if you wait months for the larger CVR surgery, that is just more time for things to distort and worsen. Dr Magge did say that during CVR surgery he can correct the flatness that occurs on the forehead in Coronal babies but the nose deviation is something that cannot be corrected. Well... I am just fine with that!. Alice's forehead may be a little flat on one side for a little while but I am ok with that! If we avoided putting our sweet baby through a large reconstructive surgery of her skull, an ear to ear incision etc...and all she has is a flattened spot...so what?!? Although Endo babies continue to improve after helmet therapy and their brow is pushed out by sinuses. When her helmet is off, you can't even tell what she has been through. I couldn't be happier with our decision to FIGHT for this endoscopic surgery! So grateful for Dr Magge coming into out lives at the perfect time and so blessed to have our beautiful little Alice...she is my hero!

I also want to take time to thank a sweet friend of mine who recently hosted a fundraiser for Alice on Instagram to help us pay for her helmets. I can't thank you enough for your hard work and your sweet heart! (@auctionforAIC)

Below is a new awareness video I have been working VERY hard on to help other families and also awareness of Craniosynostosis and shed light on the endoscopic surgery option. It would mean the world to me if you would share this video with others...especially new mothers/fathers.

A Momma's Nerves

I couldn't sleep at all last night...I kept tossing and turning and WORRYING. Leading up to this appointment I was extremely nervous. Over the past few months there has been very minimal growth of Alice's head...which could be a sign of a problem like refusing of the left coronal suture. To add to my nerves...Alice's followup appointment had been moved due to a snow storm a couple weeks ago and was rescheduled at the hospital where Alice had surgery in downtown DC instead of the usual office we go to just outside of the city. As I tossed and turned last night I just kept thinking about her surgery and how scary it was for us...and returning to the hospital where she had the surgery just added to my uneasy feelings.

My husband, Alice and I took a day trip to DC...did a little sight seeing on the way in, some accidentally as we took wrong turns and ran into road work but we made it to the hospital with an hour to spare. Just enough time to grab lunch in the hospital cafeteria and take Alice in the hospital Atrium/lobby where I wished I could have taken her last time...but she was stuck in the hospital bed.

I knew she would love them!

They added new balloons since we were there in July for her surgery

   

So Dr Magge measured her head and took pictures. He asked about how she was doing developmentally and how we thought she looked. I told him about my concerns about Alice's eyes recently and that I had them checked. I have heard alot about babies with unicoronal (left or right coronal) having eye problems. He explained to me that most of those cases are babies that had CVR (reconstructive skull surgery). There are studies to support that babies that have the endoscopic surgery don't seem to be as affected since releasing the suture that is fused helps with the asymmetry and reduces the chances of eye problems. We told him we noticed very early on how quickly her nose and mouth asymmetry was corrected. He then asked us how we think her forehead/eyebrow looks. We told him that it without a doubt it has improved a great deal...but it was still flat looking. We knew going into this endoscopic surgery that her results may not be as good as a baby that had the procedure done at 3 months old but we were willing to risk the cosmetic aspect of it to avoid reconstructive skull surgery. He said he could feel that the bone was starting to fill back in where he did the craniectemy but that it wouldn't affect her progress. The plan is to keep Alice in her helmet until she is 18 months old, although he will followup and keep an eye on her and could possibly extend it depending on how's she is doing. As Alice continues growing...her brain will push her skull outward and continue to push her affected side outward. With time, her skull will not appear as flat and her brow bone will eventually come out, even though it is recessed now. There isn't a medical need to do further surgery on Alice...it would only be cosmetic at this point, unless something changes.We won't be considering another surgery unless Dr Magge thinks she NEEDS it. The reason her head has not been growing dramatically is just because she is in the lower percentile for growth...her head is in the 25th percentile. She has a small head but it is growing gradually just like the rest of her. We call her our little runt :)

My point to this post is not to only let my friends and family know how the appointment went but to also let those of you who have stumbled across this blog to know how happy we are that we chose endoscopic surgery for our child. There are so many posts I ran across when I did my research in the beginning that said babies who have the endoscopic surgery are more likely to have to have more surgery....well, this is not true in most cases. Endoscopic surgery literally stops Craniosynostosis in it's tracks...when your baby's affected suture is released during surgery, amazing things begin to happen. We saw almost instant results with Alice's facial asymmetry....and then the helmet started to do it's magic. Some people may look at the helmet as an inconvenience to them...but it's not to your baby! Your baby adapts amazingly well...and it becomes part of them....and IT WORKS! Parents adapt too...the helmet becomes the new normal after a few months. My husband and I always talk about how different she looks without it because we are so used to her with it on...we actually get nervous when it is off while we clean it. It definitely comes in handy for a baby learning to walk that falls constantly :) Please consider this option for your child if you are given the opportunity. It is truly amazing how far our sweet Alice has come!

Thank you so much to my friends and family and even complete strangers who sent positive vibes and prayers our way as this nervous Mommy awaited this appointment. So happy that Dr Magge helped to ease my fears...I feel so much better! One thing that will never change though...how much you worry about your baby after they have been diagnosed Craniosynostosis...that fear is always there... 

Just 8 months into helmet therapy! She has improved so much!

If you Believe in it, then Fight for it

I have to vent...based on my experience.

It is unimaginable to me that some doctors don't look out for the best interest in their patients....why? I don't know...because it is so routine for them, because of money, or maybe some of them just don't genuinely care like we would like to hope. Well, I guess most doctors expect the parents to just take their word and go with whatever they say...but not this mom!

A little something I created to raise awareness. It's a picture of Alice's foot with a bracelet
my older daughter made for her. I love this quote...it seemed very fitting.

As a parent you put your trust into this doctor you are seeing and trust their judgement...but please don't take the word and opinion from the first opinion you get. That, to me, is the biggest mistake as a parent you could make.. Why jump into a surgery for your child based on one person's opinion? Why not get additional opinions? You owe it to your child to explore other opinions of qualified doctors who can treat your baby.You are your child's advocate, their voice. If I had taken the first doctor's opinion and not pushed for a second opinion..my child's treatment and outcome would have been DRAMATICALLY different.

You have to remember that some doctors look at CVR (the open surgery) as such a routine thing, it's no big deal to them...it's not their child! You would hope as a decent human being that they would look out for your child...and if your child wasn't able to get endoscopic surgery based on their typical endoscopic window, that they would say..." Hey I know a Dr _____ will do the endoscopic surgery past 3 months of age" ...but no, that is just not the case, as you would expect. You have to research and find that out for yourself.

My intentions from the start were to get my daughter the less invasive treatment she needed and not settling for the first opinion...I knew I would do whatever I could to avoid reconstructive skull surgery for my child by fighting for endoscopic. CVR may seem routine for some doctors, but not to the parents going through this. I started this blog and did the news story (http://www.youtube.com/watch?v=NKSUElWbzfM) so that awareness would be raised about craniosynostosis...and so others would know that there are some doctors out there that offer endoscopic surgery up to 6 months of age...which I would have NEVER known if I had not researched it myself.

Parents...PLEASE get many opinions.You owe it to your child to get many opinions and go with the doctor that you feel is right in your heart...not the one that is closest or the one you first saw...don't take NO for an answer. You will run into road blocks, you will feel defeated...but I promise you, there will be such a huge reward for fighting for your child. I have never been more proud of myself than I was with how I handled Alice's journey. I knew what I wanted for my baby and I made it happen...no it wasn't easy but it was worth it. I am so grateful for all the people that were helpful along the way and for everyone's support.

Don't Worry, Be Happy

From the moment you hear that your child is being referred to a specialist, specifically a neurosurgeon, fear comes over you. The last thing you want as a parent is to see your child go through surgery or be in pain...and you naturally want to protect them from that...until your realize you can't. This birth defect is not something that you can bypass....surgery isn't an option for the majority cases of Craniosynostosis. Then once you finally accept your child has to have surgery then you have the anticipation of waiting for surgery day...even on that day I battled a mix of emotions. I just wanted to pick her up and leave..I didn't want her to have the surgery. I think that was the hardest part for me...accepting that this had to happen and I had to trust complete strangers with my child. After you get through the surgery and recovery you then live with that fear of more problems coming up. In our situation our daughter had endoscopic surgery for left coronal and now is in helmet therapy. I constantly inspect her head and examine her physical features fearing the worst...that another suture has fused or that she will need another surgery...it consumes me at times.

Alice's skull (left) before surgery compared to a normal skull of a newborn

Last week Alice had a helmet adjustment appointment. I already had some concerns from two weeks prior but was hoping I would be relieved of my worries this time...but I wasn't . Alice's head has not had hardly any growth in 4 weeks time...which can sometimes be a big concern. I immediately went into panic mode thinking the worst. She could possibly need more surgery, my worst fear. I emailed Dr Magge as soon as I could and expressed my concerns. I also vented to a couple friends...one who had been through the same surgery with her son, and one who had been supportive through Alice's journey. They both tried to calm me down and were very sweet and reassuring. One friend said "Remember you have done everything you can do right now. Gosh forbid Cheryl she has to have a larger operation at some point (prayerfully that won't happen but if it were needed) you also have to remember you have helped delay it by having the less invasive one months ago. Had you waited till she was a year old to do the big surgery we can only just imagine how it would have effected her sweet face and possibly motor or cognitive abilities. Keep the faith, pray and ask God repeatedly to take away any fear that is creeping in" Her words definitely helped me realize that I have done everything I can for her...I fought hard for the less invasive endoscopic surgery and even traveled out of town so that she could have that surgery. I have no regrets on my decision for endoscopic surgery for my child. I feel like it "stopped Cranio in it's tracks" as my other friend said...and helped her in the long run, more surgery or not.  I have done everything in my power to help her...it is out of my hands and in God's hands now. 

Alice, one year ago

Alice's first birthday is tomorrow...it blows my mind that it has been a year. When I reflect back on just how much she has been through in her short year of life, it makes me emotional. What a strong girl I have. When I brought her home from the hospital she was somewhat fussy at first...and for the first several weeks. For some reason I started singing her the "Don't Worry, Be Happy" song (from the late 80's, remember?) It seemed to soothe her so I continued to sing it to her over and over for the next few months. So, I am going to take my own advice and try not to worry and to be happy. Easier said than done...i think I will always worry about her...but hopefully we will get some reassurance when we followup with her neurosurgeon in a month. Please keep Alice in your prayers. Happy 1st Birthday to our sweet Alice!!!

Happy 1st Birthday sweet girl

Reflecting on 2013

We received the best gift this year, our sweet Alice was born!  I wasn't thrilled about my daughter being born in 2013, I guess you could say I am slightly superstitious of the number 13, because of my grandfather and how he felt about it. (long story) So...as I reflect back on 2013 I could easily talk about all the negative things that happened, I could blame the number 13 for all the bad things ...and say 2013 was a terrible year...BUT I am not...instead I am going to look at the positive things...

Our family

My mom has pulled through some very scary episodes that she was hospitalized for and thankfully is on the verge of getting some answers so that we can avoid it from happening again. My sister survived a very scary car crash, thank God!  My Grandmother has been in and out of the hospital but has pulled through and fought her way back up. She has been such a trooper! I am so thankful for all of these things...sad that they have happened but grateful that they are still here with me. Grateful for a strong support system, and my wonderful family and friends.

Alice's 1st Christmas

Of course how could I leave out the reason for creating this blog? Alice being diagnosed with Craniosynostosis. Yes it was a very scary and emotional trying time for us...but I am grateful that she was diagnosed with something that COULD be treated. Happy that it was caught early enough that we were able to get her early treatment. Blessed to come across Dr Magge that was able to give Alice the surgery that we wanted for her, endoscopic surgery. We didn't have any options, she had to have surgery...and if she had to, we knew in our hearts that fighting for the less invasive surgery was what we wanted for our baby. So thank you 2013 for proving to me that you didn't bring just negative things...but there was a light on the other side.

When I first found out about Alice's diagnosis I was a basket case. A friend of mine said some things to me that helped alot. She said,

"I know it's hard but when you are worrying, try to focus only on the things that you can change or have control over. Focus on doing the best you can for her right now and doing as much research on the condition, etc. See if there are other families who have been through it before.
Just knowing what to possibly expect will help. The unknown is the scariest"

Her words really helped me to look at it from another perspective and look at it as a way to help other families as well and focus on helping my daughter in any way I could. My friend, who I mentioned above, had been through the unthinkable, losing her sweet girl to a rare disease called Niemann-pick. I learned alot from her and from her sweet girl. Her daughter touched the lives of thousands and helped others in so many ways. Her blog inspired me... the way she shared her story, shared her sweet daughter with us, how positive she was and the way she took such a heartbreaking diagnosis and used it to touch the lives of others and spread the word about Niemann pick disease. Check out her blog to read more about sweet Kaitlyn and Niemann-pick disease at this link.  http://niemannpick.blogspot.com/  Thank you Deanna, you inspired me to look at the positive and to focus on what I could control. I know our situations are completely not related and there is no comparison to what she and her family have been through...but I just wanted to acknowledge her and her beautiful daughter Kaitlyn for helping me.

After speaking to her, I knew others would be as upset as I was initially and I knew that I needed to record everything I could to help others that were searching for guidance and information. If others were searching for help on the internet, I hoped that my blog would help them and hopefully even lead them to early treatment for their child. This is another BIG positive thing about 2013.  I have received so many messages and it makes me feel so good inside that I was able to do my part to help them...validation that documenting everything was the right thing to do.

So instead of looking at these things that happened in 2013 as bad things I look at them in a positive light. I am so fortunate to have my family...my mom, dad, sister and my grandmother and extended family. I feel beyond blessed to have my husband by my side and my three sweet babies. I look forward to 2014... to celebrating Alice's 1st birthday and I pray that things continue to progress with Alice and that she will not need any more surgery. As long as things continue to go well, Alice will be able to remove her helmet permanently by the end of the summer and hopefully we can put this whole 'Alice in Cranioland' journey behind us. I look forward to making many more memories with my family and cherishing every moment I have with them.

Checking out the lights

Happy New Year everyone!!!

Motherhood and decisions

Being a mother is such a blessing and so rewarding, I love being a mother to my 3 babies. Until you become a mother, you just have no idea how much your life changes. The way you look at the world and the decisions you make...everything is completely different. You worry about your children all of the time, about every little thing....and I think Alice's diagnosis and surgery made me worry even more. I look at Alice's head and worry constantly...terrified at the idea of her having to have another surgery. Worried that her skull isn't growing correctly. I have been nervous for weeks approaching her followup appointment.

Alice's first Thanksgiving

Today we saw Dr Magge in DC for Alice's followup. She is 4 and a half months post op. Dr Magge took measurements of her head today and her skull is progressively growing the way that is should...Thank goodness! He think she looks great and that she will continue to do well. Alice was a little older than most babies that typically have endoscopic surgery...but in his opinion, Alice had a milder case of Left Coronal Craniosynostosis. ..so that should help things. We were originally told Alice would be in her helmet for 18 months....or so we thought. ..but it turns out the we misunderstood Dr Magge! Alice will be in the helmet until she is 18 months old...which has her being out of the helmet next summer...woo hoo! That is excellent news considering we thought she would be in it until she was almost 2. So we are SUPER EXCITED about that and I expect a huge celebration that day! Praying that this whole Cranio experience will be behind us that day...

Alice at her appt today with her doll. A lady makes these dolls for all of the kids. They are wearing little hospital gowns....what a sweet thing to do!

For those of you out there that may have stumbled across this blog in hopes of making a decision between endoscopic surgery or CVR surgery for your child. I just want you to know how happy we are with our decision. I chose not to put my baby through a reconstructive surgery and I fought hard for this endoscopic surgery. I met a sweet lady that made up my mind for me on a cranio forum. She simply said...

" I don't know how much you have read about endo but it tends to have a shorter hospital stay and recovery period, less blood loss and although the helmet can be challenging most babes and parents get used to it pretty quickly. I don't know of any endo parents who wish they had done CVR but I do know some CVR parents who wish they had been able to do endo(myself included)."

This is what ultimately made my mind up and made me realize that fighting to the endoscopic surgery was what I needed to do. So I did....I fought, I cried, I waited , I cried, I got angry...but I won...lots of hard work on my part with the help of others but we got our baby the treatment she needed. A friend of mine said..."endoscopic surgery stops Craniosynostosis in it's tracks" and it does. I started to see my baby transforming right before the surgery. ...and I know that she would have only gotten worse if we had waited 6 more months for the larger surgery. Instead once the doctor opened that suture up and allowed the brain and skull to grow as it should...her deformation stopped....possibly preventing further problems such as eye problems, pressure on her brain, developmental problems etc. Please consider endoscopic surgery if your child is given that option....not everyone has a choice.

Snoozing on the drive home