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.