Post-op Appointment With Neurosurgeon

We had Mason's post-op appointment today (12/23/12, 13 days post surgery). Dr. Wrubel is pleased with how everything looks. He said the lumps and bumps will go away over time. The bruising and swelling is of course also still a work in progress. We go back again to see him and for a CT scan at 6 months post-op in June. Until then, we are just supposed to live our normal lives. :) 

Updates coming soon...

Hi everyone! I'm so sorry about my lack of posts since surgery! I promise I will post soon. I haven't had a lot of free time since surgery while taking care of Mason and prepping for Christmas. I also know how emotional it will be to re-hash surgery and the days in the hospital. I promise I will though, especially for the cranio parents facing surgery that need to know what happens. Will also post lots of pics. Merry Christmas!!!

The handoff

Handed my baby over for surgery at 12:35. Hardest thing I've ever had to do. My heart hurts so bad, but all of the prayers bring me a little comfort. Thank you all.

Fundraiser

Some very generous supporters of Mason recently set up a fundraiser for his surgery expenses - thank you!  They set the goal to cover half of Mason's deductible/out of pocket portion through our insurance ($7,000 as of right now is what we are being told is our max out of pocket annual expense, but we have received notice that our current insurance plan isn't honored under Obamacare.  So, we are not sure what we will be responsible for.) Since some of you have contacted me to ask if one was in place, I figured I should go ahead and post the link here.  Mason's Fundraiser Link  ( www.youcaring.com/medical-fundraiser/mason-s-craniosynostosis-journey/114766 )

Thank you all for the continued thoughts and prayers.  We are getting everything ready for the big day, and of course are very nervous.  Thank you for your support!

Our Pre-Surgery Photo Session

After Mason's appointment with his craniofacial plastic surgeon today, we met up with my photographer friend for a lifestyle family session before Mason's surgery (yes, photographers need photographers too!).  I wanted to do a photo session to remember our days before the big surgery, and to remember every little sweet detail of Mason before surgery - he will look so much different after surgery (makes me sad to think of him looking any different than he does because I think he looks perfect just like he is).  She did an AMAZING job, and we had such a great time doing the session.  We are forever grateful for these sweet memories captured for us.  Thank you, Megan!!!

(click the HD button for full, top quality)

How To Help Us

Mason's surgery is 1 very short week away from tomorrow.  Please continue to pray for Mason, his surgeons, and our family.  We appreciate every single prayer!  We also appreciate the sweet cards we have been getting - thank you all!

If you know me, you know that I am not one to let people do things for me - I am very hardheaded and always have had the "I'll do it myself" mentality.  It is hard for me to let people take care of me, but I know I need to give that up in this situation.  A lot of people have so generously offered to help us during these tough times - THANK YOU!  We have been told by so many people to let them know if there is anything we need or need help with.  Since we have never been through anything like this before in our lives, I am not sure of our needs.  I have no idea what we need now, while in the hospital, and when we get home...  We have been told that we will need more help after surgery than we did with newborns.  So, I think it is time to take you up on your very generous offers. 

A couple of fellow cranio moms sent me a list of ways people can help us, and I figured I would post it here:

-  LOTS AND LOTS OF PRAYERS!
-  Meals brought to the hospital (we will likely be in the hospital for 5 or more days)
-  Care packages/baskets for Mason and us for the hospital with things we need and things to pass time
-  People to come sit with us at the hospital for support and so that we can break away if needed to shower, eat, etc.
-  Meals for a couple of weeks once we return home (a meal calendar has been started, so let me know if you would like the link, or feel free to call, text, or stop by)
-  People to come play with Easton and maybe take him to the park, Catch Air, etc.


We have gotten requests for an address to send mail for Mason (so very thoughtful and sweet!).   Please send Mason's mail to:


GreenMellen Media
In Care Of Mason Robertson
123 Church Street NE
Suite 230
Marietta, GA 30060

Thank you all so much for your love, support, and prayers.  We literally couldn't go through this without you all!

In a fog... (I apologize in advance that this post is all over the place)

We are less than 2 weeks away from surgery, and I feel like I am constantly in a fog.  I try to go about my day and normal duties, but find myself constantly thinking about surgery.  I literally get nauseous when I think about surgery.  I am having a very hard time sleeping at night.  I am terrified to hand my baby over to strangers who literally hold his life in their hands.  I am terrified to think that my little baby's skull is going to be completely taken apart and put back together again.  I am terrified to see my sweet baby VERY swollen, eyes swelled shut, bruising on his sweet little head and face, and the big incision that will go from ear to ear.  I am terrified that my baby will be in pain and will be so confused that he is suddenly in pain and won't be able to open his eyes.  Terrified is in fact an understatement to how I feel.

As strange as this might sound, I am so sad to think about the fact that my baby will never look the same again.  From the moment I saw him  when he was put on my chest at birth, I thought he was perfect and beautiful.  He will look very different after surgery, and that will be hard.  Other cranio moms say that is one of the very hardest parts because you literally don't recognize your baby.  Mason's head is beautiful and perfect to us, although I know it isn't structurally correct for his brain...  he NEEDS this, I know.  It is just so hard to imagine all this.

I have read other cranio blogs and have done more research on Craniosynostosis than I have done on any other subject in my life.  I have looked at pictures of other cranio babies after surgery.  I know what to expect.  But, I have been told by other cranio moms that no amount of seeing pictures of other babies can prepare you for when it is your own baby.  Makes perfect sense.  I.Am.So.Scared.

There is so much to do before surgery, and I just don't have the energy to do it.  I need to pack for our extended hospital stay.  I need to do some light shopping for Mason's needs.  He will only be able to wear button/zip pj's and outfits for quite some time, since nothing can be pulled over his head.  I am also trying to learn what I will need for myself at the hospital.  I know I will need a lot of comfy clothes, and hear that I will need extra clothes because I will most likely be vomited on.  Mason is still exclusively on breast milk, so at least that part is easy.  We need to decorate for Christmas and finish our Christmas shopping since I likely won't be able to do it after surgery.  Paperwork has to be filled out, and we somehow have to come up with $7,000.  It could be a lot worse, I know, but that is A LOT of money.  A surgery that will cost well over $100,000, will hopefully not cost us more than our $7,000 out of pocket maximum (please pray that is the case!).  We also need to prepare Easton for Mason's surgery.  I am not really sure how to go about that.  I pray he will be OK with us being gone for what will likely be 5 nights, and then seeing his baby brother swollen, bruised, and his incision.  Please pray that this is not hard on him!

Next week, we have an appointment with the plastic surgeon on Wednesday, and then our pre-op appointment on Thursday.  We also want to be sure to spend a lot of time together as a family and take lots and lots of pictures of Mason - I never want to forget every little bump on his sweet misshapen head.  I want to soak in every single detail.

Thank you as always from the bottom of our hearts for your support and prayers.  We truly love each and every one of you, even those of you we have never met!  God bless you all!

"Lord I Need You"

Throughout different times every day, I catch myself singing "Lord I Need You" by Matt Maher/Chris Tomlin.  It has become my "theme song" through these difficult days I am having as surgery approaches.  It brings me a little peace and reminds me how much I need God in all of this and how much trust I need to have in Him.  I have been struggling with "giving it to God" in all this.  It is so unnatural to give up control as a mother sometimes.  I just have to keep on singing my theme song.

                                                                "Lord, I Need You"

Lord, I come, I confess
Bowing here I find my rest
Without You I fall apart
You're the One that guides my heart

Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You

Where sin runs deep Your grace is more
Where grace is found is where You are
And where You are, Lord, I am free
Holiness is Christ in me

Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You

Teach my song to rise to You
When temptation comes my way
And when I cannot stand I'll fall on You
Jesus, You're my hope and stay

Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You

You're my one defense, my righteousness
Oh God, how I need You
My one defense, my righteousness
Oh God, how I need You

Surgery time changed - praise God!

We got some amazing news yesterday! Mason's surgery will now be at 7:30am instead of 12:00pm. Praise God! I have been a wreck worrying about the fasting that goes along with his surgery. Mason eats every 2 hours during the day and then sleeps through the night. That was going to make for a hungry, upset baby with a noon surgery time. With his new surgery time, he'll be able to have breastmilk up until 1:30am and then pedialyte or water up until 3:30am. I think his hunger will be much more manageable this way. I plan to wake him up to try to get him to eat at 1:30am to hold him over. Fingers crossed that it works well! Anything to make the worst day of our lives easier.

Thank you for the continued thoughts and prayers! Please continue adding him to your prayer lists and sharing his Facebook prayer page. God bless you all!

Mason's Mail

We have had very thoughtful and generous people reach out wanting to send Mason cards and stuff for his surgery and recovery. At first, I didn't want to accept these generous offers because I didn't want anyone to feel like they need to send him stuff. I have prayed about it and feel that it would be wonderful to have the cards for him to look over when he is older, and know just how loved and supported he was during this difficult time. We plan to make a memory book of his Craniosynostosis journey to help explain his scar and surgery one day, and will include everything in it.

Please send Mason's mail to:
GreenMellen Media
In Care Of Mason Robertson
123 Church Street NE
Suite 230
Marietta, GA 30060

Thank you again for each and every prayer, and please keep them coming!  We feel the love that is being spread for our baby boy, and it truly helps a little to get through the hard days.  God bless each and every one of you.

Isaiah 43: 2 When you go through deep waters

and great trouble, I will be with you. When you go through

rivers of difficulty, you will not drown! When you walk through

the fire of oppression, you will not be burned up- The flames

will not consume you.

CT Scan Pics

I completely forgot to post some pictures from Mason's CT scan. Hopefully these will help you visualize what is going on with his skull and why his brain won't have room to grow properly if he didn't have surgery.

A map of the sutures for reference when looking at the scan images:

On the top of his forehead, you will see a dark spot - that is his soft spot.  At the back of the soft spot starts the sagittal suture.  You will see that Mason's is completely closed (fused).  There should be the same "line" looking things that are running down his forehead and on the sides of his head.  The sagittal suture being fused, causes his brain to push forward instead of having room to round out his skull.  That is why his head is long and narrow and his sweet little forehead protrudes.

Here is a picture of Mason's sweet little head at 6 weeks old.  The oblong shape is caused by Craniosynostosis of the sagittal suture. 

1 Month To Go

Mason is 3 months old today, which means his surgery is 1 short month away.  I am literally nauseous thinking about how close that is, and how fast that will be here.  I get nauseous every time I think about his surgery and what he has to go through and overcome.  I am terrified, nervous, sad, and stressed about surgery.  It isn't fair that our sweet baby has to go through this huge surgery, be in pain, and have a huge scar on his head for the rest of his life.  Don't get me wrong, it isn't fair for ANY child to go through any kind of illness, disease, injury, etc..

The next month will be full of preparations - preparations for surgery, post-surgery, and the holidays.  I have to organize the blood donors for Mason's surgery, make arrangements for Easton during surgery and our stay at the hospital, and get all of our Christmas decorating and shopping completely done.

Please continue to pray for our little man and our family to get through this hard time in our lives.  Please pray that Mason will not have a lot of pain and will make it through the surgery without any complications and minimal blood loss.  Please also pray for our strength as his surgery approaches.

Mason's Support Page On Facebook

I have gotten some requests/suggestions to create a FB page for Mason's surgery updates. I have turned it into a page for prayers, and would GREATLY appreciate your help in sharing his page with everyone you know (share the link in your status, click "Share" on the post that I recently wrote on the page, etc.). The more people we have praying for him on the day of his surgery, the better. Thank you as always for your support, love, and prayers!

Link for his Facebook page: www.facebook.com/prayersformasonrobertson

RIP Our Sweet Riley Roo

We tragically lost our beloved "Riley Roo" on October 18th.  I have been meaning to post about it, but have had a hard time being able to bring myself to do it - as if it will make it more final and real or something.  I am having a very hard time with his loss, and still wish it was all just a bad dream.

Riley had been having some breathing issues since August-ish.  He had started snorting a lot and breathing differently.  As time went on, he was having a harder and harder time.  At night, he snored really really loud and just didn't rest well.  We took him to the vet to have some tests done, assuming it was one of the 2 things most boxers get: cancer or heart issues.  We had xrays and blood work done, and they all came back normal.  That was good news that meant it wasn't his heart or lungs or an obvious mass.  But, there were a lot of answers still needed.  His left nostril was completely obstructed by tissue and/or swelling - you could actually see it with a flashlight.  We decided to take him to a specialist to have his nose scoped and further testing done.  The specialist took biopsies and cultures as well.  Everything came back normal, and we were all so stumped.  The vet assumed that he had a bacterial infection, and we started trying out different antibiotics to hopefully knock it out, along with prednisone.  His condition improved briefly, and then went right back to what it was.

At that point, we switched to some different meds in hopes that they would work.  We were very frustrated to find that they weren't working.  It was getting harder and harder for him to breath, and it was heartbreaking to see how exhausted he was from not being able to rest at night.  I was starting to feel very helpless/hopeless in being able to help our sweet pup.

Tuesday night before bed, Riley's nose had "polyp" looking things on the outside of his nostril - he never had those before.  We went to bed thinking it was possibly a tumor rapidly growing and that we would take him to the vet the next morning.  Mason woke up for a feeding around 5am and I heard rustling around in our bathroom (we had to have the pups start sleeping in our closet/bathroom because poor Riley's snoring was so loud and would wake up Mason).  I opened the bathroom door to what I describe as a CSI scene - there was blood EVERYWHERE.  I got Clay and he tended to Riley while I fed Mason.  Thank GOD he was in town!

We called my mom to come sit with the boys while we took Riley to the vet.  He spent the day there and the bleeding didn't occur a single bit while he was there.  The vet took more cultures of his nostrils, in hopes that something would "grow" this time and tell us what meds he needed to be on to help him.  We took him home and everything seemed to be as it was before.  We were patiently waiting for the culture results and cautiously optimistic that we would have answers at last.

Thursday night before bed, Clay came and told me that Riley was bleeding profusely from his nose again.  We kept him in the bathroom and tried to get the bleeding under control with ice packs.  I thought at one point the bleeding was under control, and tried to get a little sleep.  Clay came and woke me up around 1am and said that we had to rush to the vet and that Riley couldn't breathe and the bleeding wouldn't stop.  I walked in to see him and just "knew" that there was nothing we could do to make him better.

That ride to the emergency vet was the hardest trip of my life.  I sat in the floor with his head on my lap and just told him how much I loved him and what a good boy he was.  I will forever cherish those final moments with him.  Clay and I held and loved on Riley while he took his last breaths.  It was literally the hardest thing I have ever been through.  I am glad that the last things he heard were how much we love him and what a good boy he was.  It is heartbreaking that I couldn't do more for my best friend.

The past 3 weeks have been so hard without my best friend following me around the house everywhere I go.  He was literally ALWAYS with me at home.  I picked him out when he was only 5 days old, before his eyes were even open yet.  He would have been 10 years old this month, and I would give anything to be able to celebrate his birthday with him.  He was with me through the most life changing moments in my life: meeting Clay, our engagement, our wedding, being pregnant with both boys, and everything else I have gone through over the past 10 years.  He was SO good and patient with Easton - Easton LOVED him and asked about him right when he woke up every morning.  He will be missed forever, and there will always be a piece of my heart missing.

Mason's Blood Type - Donations Needed

Monday we took Mason for his first round of pre-surgery blood work.  It was very hard to see him go through that, and I know that was probably the easiest part of this entire process.  I still don't know how I'm going to be able to handle seeing my baby in his condition after surgery.  Please continue praying for my strength to get through all this.

He was blood typed because he will need blood donated for his surgery (blood loss is a major risk of this surgery since infants produce a lot of their blood in their skull and only have about a liter of blood in their little bodies!).  We found out today that his blood type is O+.  We need at least 4 donors for his surgery.  If you are an O+ and interested, please email me or call ASAP.  There are specific instructions on how to go about donating specifically for Mason.  With his surgery being less than 6 weeks away, we need to get this process started quickly.  We greatly appreciate anyone's generosity in helping our little man out!

Also, please be sure to enter your email address on the right hand side of this blog so that you get auto notifications of new posts.  This blog is how I will keep everyone informed during surgery, our hospital stay, recovery, etc..  I don't want anyone to miss the updates who wants to see them.

All About Mason

The focus on this blog has been Mason's surgery and keeping everyone posted on everything... I think we need a positive post about Mason and who he is becoming. :)

Mason is 11 weeks old!  Time is flying by WAY too fast.  I thought it was fast with Easton, but it is way faster with baby #2.  It is so bittersweet!  At his 2 month pediatrician appointment he weighed 13 lbs, 3 ozs (64th percentile) and was 24 inches long (84th percentile).  He got his first vaccinations and had a really hard time with them.  Poor baby had a fever for 2 days and horrible stomach problems for over a week.  I hate that for these babies, but I do feel that vaccinations are important in having healthy kids.

Mason is the sweetest and most laid back baby.  He literally never cries unless he is over-tired or starving, and even then its not a full blown cry.  He is getting the best little personality and is so different than his big brother in many ways.  Although he was also very laid back and an easy baby, Easton demanded our (and everyone's) attention at all times and made sure you knew when he needed or wanted something.  Mason is perfectly content just watching what is going on and taking it all in.  He has the sweetest shy little smile and laugh.  When he smiles, you not only see it on his face, but it shows in his sweet eyes - he literally gets a "twinkle" in his eyes.  I predict that we will be my shy and more sensitive child, while Easton is the center of attention. :)

Mason started sleeping through the night at about 6 weeks from 10:30pm-5 or 6am and then eats and goes back to sleep until 8 or 9.  He is exclusively on breast milk and eats 6 or 7 times per day.  We do a flexible version of Babywise, so he naps for the last 1 to 1 1/2 hours of each 3 hour cycle and "Eats, plays, sleeps".  Speaking of sleep, he is still in our room!  I know, I know... he is 11 weeks old now and needs to be in his bed. :(  I have him napping in his room and am building up the courage to move him to it at night.  I don't know if it is because of our master bedroom on the main or me being overprotective because of his "condition", but I just love having him in our room.  I will get there soon, I hope.

It is so touching to see the relationship that is developing already between Easton and Mason.  Easton LOVES Mason and asks where he is the second he wakes up, and always wants to kiss and hug him.  He loves to talk to him and is just so sweet to him.  Mason has started to really pay attention to Easton and watches his every move.  It makes me so emotional to see them together, and I know that will continue for the rest of my life. :)  I certainly don't want Mason to grow up any faster than he already is (slow down, time!), but I do look forward to watching them grow up together and seeing their relationship in the future years.  There is nothing like the love of siblings!

Thank you as always for your continued thoughts and prayers.  It means so much to us to know that our baby is loved and prayed for by so many people.

This is a picture from our recent beach trip.  Poor Easton had a 102 fever and that is why he looks so miserable.

December 10, 2013

We found out on Monday that Mason's surgery will be on December 10th at noon.  This is the day he turns 4 months old.  The scheduler and I are playing phone tag, and I am trying to get more information and details regarding everything... will post more as soon as we catch each other.  Thank you all for your continued thoughts and prayers.

The people God puts in your life

I've always been a believer that God places people in your life for certain reasons. Sometimes it's to teach you, to love you, or to provide you with something. I recently had a situation of this that I want to share.

This situation happened the week after Mason's 1 month doctors appointment when our nightmare began with his surgery. We were feeling very helpless waiting for his referral to the neurosurgeon to be processed. We knew that we were facing a long wait on getting an appointment, and it was eating me alive - I couldn't sleep and cried all the time. We just wanted a for sure diagnosis and to know a game plan for his surgery.

I sent an email out to family and some friends to let them know what was going on. A few days after sending it, I felt led to send it to some additional people. Something told me to include a few of my favorite clients that recently had babies around the same time as me, and some that I have grown close to and adore. Little did I know how much one little email would change our lives!

Within about 5 minutes of pressing send, I received a text from one of my amazing clients. This all took place after 9:30pm, even though the times listed below are the screenshot times of saving these to the blog. :)

I won't bore you with the rest of our texts... How amazing is that?! God is so good, and we are so blessed that she was placed in our lives. I of course was immediately crying uncontrollably and felt an immediate wave of slight relief. I even slept a little better than I had. Knowing that we were closer to a diagnosis for Mason made us feel better despite knowing what we were facing. If it hadn't been for her, we would most likely still be waiting for an appointment.

Words will never be able to express how grateful we are to Melissa. I seriously feel like she is a sort of guardian angel of Mason's. God is good all the time! 

Craniofacial Surgeon Appointment

We met with Mason's Craniofacial (plastic) surgeon yesterday morning.  His name is Dr. Gregory Mackay.  You can read more about him here: http://thebeautyofknowledge.com/atlanta-plastic-surgeons/gregory-j-mackay-md-facs/.  We fist met with his PA who took pictures and measurements of Mason's head.  She went over some of the details about the surgery with us and about Dr. Mackay.  When I learned that he was a plastic surgeon prior to the appointment, I was honestly concerned because I was afraid he does more cosmetic than what Mason needs.  He actually is more of a Craniofacial Surgeon and reconstructive surgeon than cosmetic.  He has a ton of experience with Craniosynostosis and does 3-4 surgeries for it each month.  Knowing that made me feel so much better.  He is one of only 3 surgeons in Atlanta that can do these surgeries.

We liked Dr. Mackay a lot and feel comfortable with this.  He is a parent and has a lot of experience with kids and babies.  He talked with us for a long time about the surgery and different options and ways for doing the surgery (he is still not a candidate for the less invasive strip craniectomy though).  He spoke of the high severity of this surgery and the risks.  One of the biggest risks is blood loss because babies only have about a liter of blood in their little bodies.  We will have family members tested for blood match with Mason, and donate blood for his surgery.  We asked a lot of tough questions that we didn't ask Dr. Wrubel due to still being in shock at that appointment.  It is reassuring to know that they haven't had a death in this surgery - that is of course our biggest fear.  He reassured us that he takes this surgery very seriously and does it in the safest manner possible and will take good care of our sweet baby boy.

The surgery will take place at Children's Healthcare of Atlanta at Egleston Hospital instead of Scottish Rite.  Mason's surgery is going to take place in December when he is 4 months old.  Dr. Mackay's scheduler is currently coordinating with Dr. Wrubel's scheduler, and we will have a surgery date in the next few days.  I am ready to know the date and get prepared for the surgery.  We want to live life as normally as possible leading up to the surgery.  We want to enjoy our perfect baby boy, our amazing toddler, our family, and our friends.  We obviously can't pretend that we don't have this nightmare going on in our lives, but we want to not let it control our lives for the next 2 months.  We know there will be a lot of worry about the surgery over the next 2 months no matter what we do though - it is only natural.

Please continue to keep Mason and our family in your thoughts and prayers.  Pray that the surgeons will prepare to do the surgery to the very best of their ability and that Mason's little body will handle the surgery ok and heal fast.  Thank you all for your support, love, and prayers - it means the world!

Neurosurgeon Appointment

We had our appointment with the neurosurgeon on 9/23/13.  Mason's Neurosurgeon is Dr. David Wrubel with CHOA.  He is a wonderful and nice man, and we felt very comfortable with him.  You can read more about him here http://www.choa.org/childrens-hospital-services/neurosciences/programs-and-services/neurosurgery/meet-the-team/david-m-wrubel and here http://www.emoryhealthcare.org/neurosurgery/surgeons/david-wrubel.html .

We were prepared to have to wait a long time upon arriving for our appointment, but didn't have to at all - it was very nice!  I filled out a little bit of paperwork and we were quickly directed back to a room where a sweet nurse met with us first.  She asked us questions regarding my delivery, why we thought he needed to be seen, etc..  I love how much all of the CHOA employees love children and babies - it makes this process a little easier to bear.

Dr. Wrubel came in and introduced himself to us and examined Mason's head.  He was very sweet and gentle with Mason, and told us that he has a 1 yearold daughter himself.  For some reason, that makes me feel more at ease... I know that he knows how it feels to love your child and be worried about them.  I think it is one of the things that made me feel more comfortable with him.

When we got down to talking about "business", he confirmed what we already knew from our research and intuition - Mason has Sagittal Craniosynostosis.  He told us that he was going to pretend that we didn't know anything about it from researching or that this was his diagnosis, so that he could give us all of the information and not miss anything.  He explained what it is, how it effects Mason, that he has to have surgery to correct it, etc..  He was very thorough and comforting throughout it all.  I was very surprised at how well I took the confirmation of the diagnosis - I had prepared myself for ove 2 weeks to hear those words, and my heart already knew what we were going to be told.  It doesn't make any of this any easier, especially the idea of my baby being operated on and being in pain.  Sometimes this whole situation feels so surreal and I wish it was just a bad dream.

The most surprising and nerve-wracking part of the entire conversation, was when we started talking about the surgery.  We went into the appoinment thinking that Mason would be a candidate for the less invasive "Strip Craniectomy" since it was likely that he only had the sagittal suture fused and since he is less than 3 months old.  We were praying for that surgery because it is less invasive, has less risks, less swelling, less blood loss, shorter hospital stay, etc..  I guess I never thought that he wouldn't be a candidate for that surgery.

Dr. Wrubel feels that Mason needs the full "Open Craniectomy".  It is a big, serious surgery, and scares me to death. The hospital stay is longer, there are more risks, recovery is longer, he will likely need a blood transfusion during surgery, there is more swelling, etc..  The surgery itself is about 4-5 hours and consists of removing parts of the skull, reconstructing it, and putting it together with dissolvable screws and stitches.  In his words, Mason's head isn't the worst he has seen, but it is very noticeably misshapen and obvious.  In order to achieve the roundness of a normal skull shape and allow the brain to expand and grow, he doesn't feel the strip craniectomy would work.  The one "positive" to the full vs. strip, is that Mason won't have to wear the restructuring helmet that goes along with the strip craniectomy (the helmet is very different than the ones you see some babies wear who have flat spots on their head).  We have to trust that the doctor knows best, and that this is what Mason needs.

Seeing the CT scan was pretty neat.  We are going to get a copy of it and will try to post it if we can.  It was cool to see the 3D image of everything and be able to physically see the problems with his skull.  It was crazy to see that suture completely fused and closed compared to what it should look like.  The positive thing about the CT scan, is that his brain looks really good right now - please pray it stays that way.

We don't have a set surgery date yet.  Dr. Wrubel said that they might wait until Mason is 4-6 months old.  This is so that his bone can thicken prior to surgery so that it can be shaped correctly.  According to the CT scan, Mason's bone is a little thinner than they like to see it be for surgery to begin with.  As hard as it might be to wait, I actually feel slightly better knowing he will be a little bigger and stronger for the surgery.  I pray that he will handle the surgery better since he will be older.

The next step is to meet with the partnering plastic surgeon that does the surgery with Dr. Wrubel.  Apparently, he is the one that determines when the surgery happens.  We have an appointment with him on Wednesday at 9:00am.  As much as I dread the surgery and wish it didn't have to happen, I am ready to know a date so we can prepare for it mentally, emotionally, and financially.

Please continue to pray for sweet Mason.  Please pray that his body continues to grow and strengthen to handle the surgery, that his brain continues to be healthy and not be effected by the Craniosynostosis, that the surgeons are led to perform this surgery to the very very best of their abilities, that Mason won't be in pain and have a lot of blood loss, and that his healing is fast.  Please also pray for Clay and me - as you can imagine, this is very hard to grasp and go through as parents.  There aren't many moments that go by that I don't think about and worry about the surgery.  Sometimes I wish I wasn't so tender hearted and sensitive.  I can't help but think how unfair it is that this happened to Mason.  Its unfair that these things happen to any sweet, innocent children.  I know and have to remember that God is the ultimate healer, and that He is in control.

Here are 2 Bible verse that I have tried to remember lately:

Isaiah 43: 2 

"When you go through deep waters and great trouble, I will be with you. When you go through rivers of difficulty, you will not drown! When you walk through the fire of oppression, you will not be burned up- The flames will not consume you."

and

Philippians 4:6-7 

“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

Mason's CT Scan

Mason had his CT scan performed on 9/20/13 at CHOA.  When the appointment was scheduled for 9:30am, the girl on the phone told me that he couldn't eat past 6:00am - this had me VERY nervous, since my chunky monkey eats every 3 hours like clockwork during the day.  How are you supposed to tell a newborn that he isn't allowed to eat?!  This is done in case they have to be sedated, which I understand.  I made sure to wake up and feed him right at 6:00am and prayed he would be able to hold off until 9:30.

We arrived at the hospital at our scheduled appointment time and got all checked in and waited to be registered.  Mason of course woke up and started acting hungry.  Thankfully, I had grabbed my Baby K'Tan Sling before we left the car.  I put him in it, gave him his pacifier, and he thankfully zonked out.  I was able to keep him asleep the whole time - praise God!

We were finally called around 10:15am.  The nurses and radiology staff were super nice and caring of our sweet baby.  We walked into the CT scan room and quietly and carefully took him out of the sling.  He was laid on the CT scan, wrapped in warm blankets, and covered with a protection vest thing.  He thankfully stayed asleep the entire time.  They had to redo the scan due to him moving his head a little, but the entire thing was painless and easy.

After it was all over, we woke him up and fed the hungry little guy out in the lobby.  As we sat there, I was reflecting on what an amazing place CHOA is, and how neat it is that it is geared towards kids.  There is a cool fish tank with "Nemo", bright colors everywhere, and kid-oriented decor.  There were 2 clowns that were going around to the kids that were in the area.  What a great place and a blessing to us parents to know we have this place nearby!

It really pulled at my heart strings to see our little newborn in that machine.  The reality of his condition came out all too clear, as did the fact that he is going to be around all of this medical equipment and operated on.  I knew all this prior to the CT scan, of course, but seeing him there made it even more real.  I had to fight hard to not cry and be strong.  I know that is something I am going to have to learn to do through all this.  Please pray for our strength through this.


This is a picture of the CT scan machine at CHOA that Mason was in.  Obviously Mason doesn't benefit from the projection on the ceiling, but so neat that they have that for the bigger kids!

Craniosynostosis

Here is more information on Craniosynostosis, while I am writing the next post on Mason's upcoming skull surgery.  Mason has Saggital Craniosynostosis.  There are explanations of 2 kinds of surgery below... Mason has to have the full surgery.

What Is Craniosynostosis?

Sutures most often involved in craniosynostosis (drawn by Raymond Sze)

Craniosynostosis (pronounced crane-eo-sin-os-TOW-sis) is when one or more of the special joints in a baby's skull (sutures) grow together (fuse) earlier than normal. When these joints come together too early, a baby's skull cannot grow properly.

Sutures are located between the bone plates in a baby’s skull. They allow the baby’s head to come through the birth canal. After birth, the sutures let the skull get bigger to make room for brain growth.

After infancy, the sutures slowly begin to grow together to fully connect the skull bones. The skull bones begin to grow together when children are about 2 or 3 years old, but the process is not fully complete until adulthood.

The diagram below shows the several sutures in a baby’s skull. A baby can have one or more fused sutures.

When any of the sutures grow together early, the baby’s head develops a specific shape, depending on where the fusion occurs. You can usually see an unusual shape to a baby’s head at birth or shortly after. When several sutures close early, the baby's head can't expand to hold the growing brain. This can cause increased pressure in the skull that may hurt brain development.

Watch this video to learn more about craniosynostosis.

 

Craniosynostosis in Children

Craniosynostosis is usually present when babies are born (congenital). There are different types of craniosynostosis. Most children with craniosynostosis have only one fused suture. Otherwise, they are healthy. Craniosynostosis of the sagittal suture — where two bones on the top of the head come together — is the most common type. It happens most often in boys.

Doctors don't know exactly what causes craniosynostosis. 

Symptoms of Craniosynostosis

The first sign of craniosynostosis is an unusually shaped head. Other symptoms of craniosynostosis include:

• Soft spot (fontanelle) on baby's head disappears early
• Raised ridge develops along the fused sutures in the skull
• Abnormal pressure develops inside the skull

Other problems happen depending on which of the joints grow together. For example, one type of fused suture may cause a baby's face to appear slightly twisted.

Craniosynostosis Diagnosis

Craniosynostosis usually is present when your baby is born (congenital). But in mild cases, you and your doctor may not notice it right away. Doctors usually identify craniosynostosis in the first few months of life.

When your baby is born, the doctor will feel their head during a physical exam. The shape of your child's head will help the doctor tell which sutures have grown together. The doctor will most likely measure around your baby's head. This may be all your baby needs for diagnosis.

If your child's craniofacial team thinks your child has craniosynostosis, they will recommend a CT (computerized tomography) scan

 of your child's head. A CT scan is an X-ray procedure that takes a cross-sectional view of the body, which is enhanced by a computer. The timing of the CT scan will depend on your child's age, diagnosis and when surgery might be performed.

Surgery for Craniosynostosis

Surgery to correct craniosynostosis involves reshaping your child's skull. 

Often, this means open surgery. Some babies may have a minimally invasive procedure instead, called endoscopic strip craniectomy.

Open surgery

The neurosurgeon makes a cut (incision) across the top of the head. (Usually, the scar is covered completely by your child's hair within months of the surgery.) Then the neurosurgeon and a plastic surgeon work together to reshape the skull.

The neurosurgeon on the team removes the affected suture. Then, the craniofacial plastic surgeon shapes the skull bones into a more normal shape. The new shape is held together by plates and screws while the bone heals. The plates and screws are made of a special material that breaks down and dissolves completely in one or two years.

If your baby has simple (single-suture) craniosynostosis, they may need only one surgery. Children with craniofacial syndromes that cause craniosynostosis often need more than one operation to fix the problem.

After the operation, your baby will probably stay in the intensive care unit for one to three nights before moving to the regular hospital room. Babies usually stay in the hospital three to five days.

If the sagittal suture is the only suture that needs repair, surgery takes place when your baby is less than 4 months old. If other sutures need repair, we operate when your baby is 6 to 12 months old.

Endoscopic strip craniectomy

Your baby may have another option if only their sagittal or lambdoid suture is fused. This option involves taking out a strip of bone along the top of the skull through small incisions. After the surgery, your baby wears a helmet for at least three months to mold their head to a more normal shape.

Some families prefer this choice instead of open surgery. It may mean:

• Less scarring
• Less bleeding, so less chance of a blood transfusion
• Less time in surgery
• Shorter hospital stay

A mother's intuition...

I'm sure you have heard that a mother's intuition is a very powerful thing.  I had always heard it before becoming a mom, and am a firm believer.  ALWAYS trust your intuition, parents - it is how we learned of Mason's diagnosis.  More on that in a bit...  I should start from the very beginning and will get to the part about intuition and where it plays a role in all this.  

Mason was born on August 10, 2013 at 3:38 in the afternoon.  His delivery was fairly easy, and I was thrilled to be able to have the VBAC (vaginal birth after cesarean) that I had dreamed of since learning of our pregnancy with Mason.  He was a healthy 8lbs 1oz, and 20.25 inches long.  We immediately fell in love with our new little man, and began life as a family of 4.  It was clear from the very beginning that he looks just like his daddy.  I couldn't be happier about that - a "mini me" for each of us. :)  

Since Mason looked so much different than Easton, I just assumed his head shape was going to be like Clay's... he even had the cute little "ridge" where his eyebrows are, just like daddy.  I loved that he looked so masculine like daddy.  And what mommy wouldn't want a baby that is just as handsome as the man of her dreams?!  Mason's head had the normal cone head look after delivery.  It went down fast, and started to mold into its shape.  There were a few "lumps", but we assumed that his head was doing the normal vaginal delivery thing, and would shape correctly eventually - after all, we had a c-section baby before.

In the first 2 weeks after Mason's arrival, I didn't think much of his head shape.  I remember a conversation between Clay and me where we came to the conclusion that it would get to a normal shape and that it was probably just from the delivery and him being in the birth canal.  Right after the 2 week mark, I noticed a hard lump on the back of his head.  I had also noticed that his forehead was starting to protrude more - it wasn't the sweet little ridge like daddy's.  I kept my thoughts to myself because I didn't want to bring unwanted attention to my sweet newborn's forehead - for all I knew, that was just a characteristic of his appearance.  At that point, I had a nagging feeling that something wasn't right... I just didn't want to be a hypochondriac and sound like a crazy, worried, sleepy mommy of a newborn.  I just knew something wasn't right.  My intuition was really talking to me.

At his 1 month pediatrician appointment, I was ready to point out the lump and get some reassurance from the doctor that my feelings were wrong and that the lump was just from delivery.  I waited to point it out until the end of the appointment.  The doctor felt it and felt around his head and said that he thought "his suture might have closed a little early", and that he wanted us to see a specialist to be sure.  I honestly didn't get too nervous about this at the actual appointment because I was just feeling relieved that I wasn't making stuff up in my head about the lump.  We were told that the referral would be processed to see the Craniofacial doctor at CHOA (Children's Healthcare of Atlanta) at the Marietta location.  We went on our happy way home after that.

Once home, I had a very uneasy feeling about everything, and my intuition was kicking in once again.  I did what most any person in this technologically advanced day and age would do - I started researching online.  It didn't take long to figure out what Mason's condition was.  The pictures of the baby's heads looked just like Mason's, and it all made sense.  I showed Clay what I had found, and it was very clear to us that Mason has Craniosynostosis.  Of course, Clay didn't want to jump to conclusions, and did his best to talk me out of thinking the worst (sweet, loving husband for trying to calm my worried heart).  That night was a very sleepless night for this mommy.  I wanted to call the pediatrician right away and get the referral process sped up and ask him if this was his suspicion on the diagnosis on our sweet baby boy (all of our research was done after hours).   

I called the doctor's office the second it opened, and requested for the doctor to call me ASAP.  When he called back, I explained my research and asked him if he thought Mason had Craniosynostosis.  He confirmed that was his suspicion.  He promised to speed up the referral process so that we could get the answers and information we longed for.  I hung up the phone and started bawling my eyes out.  Even though his diagnosis hadn't been confirmed by a specialist yet, I knew in my heart that we were facing a huge surgery for our newborn - every parent's worst nightmare.

The referral process is cruel, let me tell you!  Mason's pediatrician had initially told us that we would need to see a Craniofacial specialist.  Upon further research, I found that he actually needed to see a neurosurgeon.  I called the referral person at the office, and she confirmed that we didn't need to see the Craniofacial specialist.  She promised to fax over the referral information to the CHOA neurosurgeon's office right away.  We tried to be patient, but these worried parents just couldn't wait around doing nothing!  I called the neurosurgeon's office, and they had never received the paperwork.  I called back the referral person and relayed that information.  By this time, it was Thursday, and we knew how miserable we would be going through the weekend with no appointment set.  I called the CHOA contact again.  She explained the process to me: paperwork sent in by referring doctor, reviewed by one of the neurosurgeons (they only review new files 1 time per week!), and then the neurosurgeon determines when they want the appointments set for.  I was told during the waiting process, that sometimes it speeds up the process if you have a CT scan prior to the initial visit, so the doctor can confirm the diagnosis.  Upon telling the referral lady at the office that we were open to this, she promised to talk to Mason's doc and call me back.  Thankfully, the doctor agreed with me that we should go ahead and order the CT scan.  We were called on Friday, and we thankfully went into the weekend knowing we would be seen the following week for the CT scan and finally get some answers.

More to come later...