18 Month Post-op Appointment!

Mason had his 18 month post-op CT scan and appointment with Dr. Wrubel.  We were really worried that he would have to be sedated for his ultrasound, but he did amazing!  Glory be to God for keeping him calm and still for his CT scan!

Our appointment with Dr. Wrubel went well.  He did say for the first time, that Mason is likely facing another surgery before Kindergarten.  His big gap (and smaller ones) in his skull, are just not getting smaller.  We aren't going to dwell on the thought of another surgery, but are mentally prepared to face it when it comes along.  The good news is that his entire skull will not need to be taken apart again.  They would use the same ear to ear incision that was previously made, cut a "pancake" out of an area of his skull, cut that piece into 2 thin pieces, replace it where it came from, and then use the other piece to fill in the gaps.  He would still have a lot of swelling and bruising, but the hospital stay should be shorter and less extensive.

His next CT scan and appointment is in a year, so we will just be enjoying our little man until then. :) Thank you all for your continued thoughts, prayers, and love for Mason!

Here's a picture of our post-appointment breakfast with Mason.  I totally forgot to get a picture with Dr. Wrubel this time!

Surgery Days In Pictures

I am so sorry that I still haven't posted details about the surgery.  I am not emotionally ready to revisit the emotions of those days in details yet.  Those were the darkest days of my life, and I am just not there yet - I hope you all understand.  I will do it soon, I promise. :)

In the meantime, I do want to go ahead and at least post some pictures. :)

Mason turned 4 months on the day of surgery, so mommy took his 4 month picture before we left

 A great organization called "Socks for Surgery" sent Mason the cutest socks.  Please consider supposrting a child facing surgery by visiting their website! http://www.socks4surgery.com/

A very nervous mommy and happy baby Mason, waiting for surgery

12/10/13 at 7:15PM

12/10/13 at 7:10PM

Mason looked amazing when we first saw him in PICU.  Best moment to finally see our baby!

Words can't explain how worried we were when they couldn't get his pain under control.  I tried holding him to calm him, but it only worked for a little while.  It was so hard knowing that I couldn't bring him comfort.

 The bruising and swelling started to set in right before our eyes.  These pictures were around 9:00PM.

Mason had to be put on oxygen about 12 hours after surgery.  Words can't explain how hard it was to see our little baby like this

12/11/13 at 6:43AM

12/11/13 at 10:48AM

12/11/13 at 11:55AM

12/11/13 at 2:25PM

12/11/13 at 4:33PM

12/11/13 at 6:46PM

The swelling and bruising peaked 2 days after surgery.  It was so hard to see our baby be unrecognizable.  I can only imagine the discomfort he felt and the fear associated with not being able to open his eyes

 So thankful to my sister and best friend for the blood donation!  Mason needed 2 blood transfusions.

12/12/13 at 9:57AM - Mommy was FINALLY able to hold Mason again.  Best feeling ever to finally have him in my arms again and to be able to comfort him.

12/12/13 at 8:02PM

12/13/13 at 12:15PM:  
On day 3, Mason finally was able to open 1 eye!  It was like seeing him born all over again when we saw his sweet eye open!

12/14/13: Mason could finally peek through his other eye!

We debated on bringing Easton for a visit in the hospital because we didn't want him to get scared or upset.  We finally decided that it might help him to see Mason's "boo boos".  He did great and wasn't scared at all!  It was SO good to see him after being away from him.  

12/13/13 at 12:50PM: Finally out of PICU and in a regular room

12/14/13 at 7:03PM

12/14/13 at 7:03PM
Mason received this BEAUTIFUL prayer chain in his care package from Cranio Care Bears.  They are the best organization for support for Cranio families.  If you are facing surgery, please look them up: http://craniocarebears.org.  Also, please consider making a donation in honor of Mason!  

Best site ever - a smile!

His head was VERY swollen and felt like a water balloon in the back for a couple of weeks.
Side note: the incision is wavy so that his hair doesn't part when it is wet.  It is done this way to minimize the appearance

Mason and his cranio bear!

Before and after - notice how much room was given in the back of his head and how much more round his head it.  The surgeons said his brain was VERY tight in the back.  They even had to re-mold his dura matter in the back, which is not a normal thing to have to do.  So thankful that his brain has room now!

12/15/13 at 10:04AM - Ready to go home!!!  What a relief to be released by his surgeons and recover at home!

So thankful for Children's Healthcare of Atlanta at Egleston!  The staff was amazing.  We were SO glad to be going home.

Thankfully, he slept the whole way home and it was uneventful trip. :)

6 days post-op!

8 days post-op!

13 days post-op, heading to our post-op appointment with his neurosurgeon!  The appointment went well, and Mason goes back again at 6 months post-op for a follow up CT scan and appointment.

3 weeks post-op before and after!  His head is much rounder!  The back of his skull was very tight and his brain was being "pinched".  It was so tight that they had to remold the dura matter around his brain as well.  So thankful for this surgery and that his brain can now grow normally!

I promise I will post some recent pictures soon!  Thank you again for your continued thoughts and prayers for our little hero!  He is the strongest person we know!

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!

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

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.

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!