Mason's Skull Surgery

Happy Monday!

If you have been following Mason's journey on social media, you may remember that he was diagnosed with Metopic Craniosynostosis (skull fusing too early) at 5 months of age by a Neurosurgeon and wore a cranial band for several weeks to help his skull reshape. He had amazing results from the band, and a recent eye exam showed that as far as we can see, his brain is not under any intracranial pressure from his skull fusing too early. We are praising Jesus for this amazing news!
 
As of right now, Mason George will be undergoing a major skull surgery in the beginning of October to open up the part of his skull that fused too early so that his brain has enough room to continue to grow and develop. The surgery is very intense and will require a 4-6 day PICU stay afterward. We have the most amazing team of doctors at Rady's Children's Hospital. The results that this surgery will offer Mason are life-changing! I will go ahead and answer some of the most common questions people ask when they hear the news that our son needs skull surgery... hope this helps!

OK, so what does he have again?? How did he get it?
Mason has craniosynostosis (kray-nee-o-sin-os-TOE-sis), meaning that part of his skull fused too early. For him, the metopic bone (the one right in the middle of his forehead) is the one that closed to early. As his head grew, this caused his temples to be pinched, a ridge developed on his forehead, his eyes became quite close together, and his eye brow shelf is almost flat. Looking down on the top of his head, his head looks like an egg and is very narrow at the forehead. 3 in 10,000 kids have some form of craniosynostosis! So how do kids develop this rare and unique variation? Craniosynostosis can be related to a syndrome, it can be genetic, it can be influenced by the position of the baby in the womb, and it can be related to how the brain grows. In Mason's case, it is likely that his skull fused too early because of the shape of my pelvic bowl, but we will never know for sure! 

He looks fine, why does he need surgery? 
He is pretty adorable, I have to say! Unfortunately, craniosynostosis is a progressive condition. Most experts recommend surgery between 6-12 months to ensure the best possible outcome while the skull is still malleable. There are three main reasons why surgical intervention is needed: medical necessity, preventing future problems, and for cosmetic reasons. We are so thankful that he does not fall into the medical necessity category. Those babies are suffering from intracranial pressure (ICP), headaches, non-stop screaming, and significant developmental delays. Often they need emergency surgery. Mason will be having skull surgery to prevent future problems and for cosmetic reasons. The problems he could face if he does not have surgery include: development of ICP, restriction of brain growth, developmental problems, challenges with speech, behavior-related disorders, eye problems, breathing problems, and several other similar challenges. As his little baby head becomes a toddler head, a kid head, a teenager head, and finally an adult head, it will become progressively shaped very different from his peers and look kind of like a mouse (eyes, nose, and mouth close together). I originally though it would be ridiculous to put him through surgery for cosmetic reasons. In the case of pediatric plastic surgery, cosmetic means "to restore". Our team repairs cleft lips, facial injuries, and several other conditions involving the skull. They give kids a better life and bring restoration to their faces so they can go out and be world-changers. We want Mason to have the best chance to grow into all that God has intended for him.

So what do they do during the surgery?
*Not for the faint of heart. Skip over this if that is you*
Mason will be under general anesthesia. He will be undergoing two procedures during his surgery. He will have a Cranial Vault Remodeling with a Fronto Orbital Advancement, in short CVR/FOA. Basically, the team will be reshaping his skull and moving the front of his eye bones forward. The surgeons will make an incision from one ear to the other along the top of his scalp. The scalp will be partially removed and the Neurosurgeon will remove the front of his skull from his brain, the part that is fused, along with part of his eye socket. The plastic surgeon will reshape all of these bones, and then they will be placed back on his brain with re-absorbable devices to keep it from fusing again. His scalp will be sewn back up and he will be moved to the PICU for recovery. One huge bonus? He will have an awesome scar with an awesome story!

What is the recovery like? 
I have heard from other moms that it is very, very hard. For a few days Mason will have a drain in his skull, his eyes will swell shut, he will likely have a hard time eating, and he will be uncomfortable. I can stay with him 24/7 if we want to, which is amazing! My mom will thankfully be coming down to help out during the week of surgery and recovery, and I am hoping to have more family come to San Diego after he is released from the hospital to help out with Caleb. Everyone keeps telling me that babies bounce back really quickly and they are superstars compared to us adults. Two weeks after surgery moms will often say other than a scar and a whole new face, you would never know their kiddo was a cranio surgery warrior.

Wow. That's a lot of heavy and scary stuff. How are you feeling about it all?
I am at peace finally. We will continue to pray daily for healing and restoration for Mason's skull, and for God to reshape his facial bones. My heart's cry has been "God, whatever brings YOU the most glory, lead us down that path". I am fully trusting that Jesus will be glorified through this journey with Mason. I have connected with so many moms through social media who have gone through this surgery with their babies, and it very reassuring to see life on the other side of this mountain. I fully trust our Doctors and the level of skill and experience they have with performing this surgery. I still get scared and upset that my baby has to go through this, and then I am reminded God created Mason to be extraordinary. Why would I want him to be "normal" when he was born to stand out?

Mason and his Neurosurgeon Dr. Meltzer

Normal skull shape in the middle, and variations of early skulls fusion. Mason's is at the 11:00 position

 

Typical infant skull CT scan

 

Mason's CT scan. Notice the front of the skulls has fused and the eyes are closer together

 

Rough visual of the surgical procedure. Not exactly now it will be done, but its close.

Ireland

Well.... we are back from Ireland and I feel like we've settled and adjusted back to SoCal life.

It was such an amazing trip and I feel so grateful that we have the privilege and opportunity to travel over the pond with our family. I figured I would share a bit about our time traveling and some of the experiences we were able to have!

Why Ireland?
My parents have been a couple of times in the past few years and they wanted to bring the whole family back for an extended trip. My mom reserved the place we stayed in over a year ago! My dad's side of the family is of Irish heritage (remember my maiden name was Curran??) and my mom's side of the family is Scottish/Scot-Irish (MacFarland). It was also a bit of a "return-to-our-roots" type trip. We stayed for two weeks in one spot and did a bunch if day-trips to the surrounding area.

The Travels
Traveling with kids was MUCH better than I expected! They were troopers and both boys adapted super well to strange sleeping arrangements and long hours in the airplane and car.

Both kids slept a bunch on the plane and on the car ride to Clifden since we did a red-eye. The biggest challenge was John learning to drive left-hand STICK SHIFT on the left-hand side of the road (which, by the way, are tiny 2-lane roads with no shoulder). Our car was a weed-wacker several times, so you are welcome road maintenance! He was a pro by the second day. Amazing how the brain works!

The Players
So who came to play in Ireland? Our family of four, my parents, my two sisters, my brother and his brand-new wife Kristen, my grandma, my aunt and my cousin. It was a full house of fun and love. Caleb was in heaven and Mason's cheeks got kisses a plenty!

The Place.
Ok. Where we stayed was a dream. I can't believe my mom found the perfect place for us. The estate is situated outside the tourist town of Clifden, in the beautiful Conamara region on the west coast. The place we rented is a former B&B and restaurant, complete with 6 front bedrooms with en suites, two living rooms, a huge dining room, a chef's kitchen, and a separate wing with a living room and two bedrooms (that's where our family stayed!) And if that doesn't make you drool, imagine the beach and rugged Irish coastline 200 yards away. All in all spectacular.

The food
Believe it or not, we never ate out except in the airport! Some of my family did, but mostly we ate home-cooked meals (that chef's kitchen made is really easy). Thankfully Ireland has tons of gluten-free options in grocery stores, and in my opinion they are better than U.S. products. We ate well! The gluten-free ginger biscuits were serious amazing and I miss them dearly.

The Adventures
We had so many amazing and beautiful adventures. Everything, and I mean absolutely everything, is green and lush. Since we were staying on the coast, we saw so many beautiful rugged places where grass meets beach and sea. Caleb and Mason slept in the car during long outings, and John and I would just wander and get lost driving somewhere beautiful on our way home. We would usually do one long day adventuring, one day at home or staying local.

The weather
It rained a little bit almost every day we stayed in Ireland! Apparently Caleb doesn't care if it's raining or sunny, he played outside rain or shine with Grandpa Danny (aka Bacon Danny). One day we even went swimming in the ocean! We had to pry Caleb out shivering. He kept saying, "Want-t-t-t-t to do-o-o more ---- s-w-w-wimming!". This kid. The weather didn't slow us down and it was a welcome chance to the San Diego summer heat.

The End
I really miss Ireland. More than the country I miss my family. It was so much fun learning new card games, adventuring, laughing, eating good food, and spending time with the people I love most.

Back to Blogging. Life Update!

It has been so long since I have blogged!

Well... almost a year actually. Wow. That went by fast. We have a new little dude in our family that I am head over heels for. Our second son Mason! He is just the sweetest. Watching Caleb grow into being a big brother has been such a joy and pleasure to watch. I swoon daily. Mason has had a bit of a rough start in life, with several medical concerns and complications that have kept us on our toes (and frequently at Rady's Children's Hospital for appointments).

I have been feeling like the story we are living right now is worth sharing, and I hope in some way what I write about can help someone else out there. I will go a quick "life update" for 2016, and in the next few weeks/months I will be expanding the details!

December 2015
Mason George Sorenson was born at home on 12/18/2015 in the middle of the night. Shortly after his birth we discovered he had some medical complications that we needed to get addressed right away. We took him to our family doctor the next day 12 hours after he had been born, and she referred us to see several specialists at Rady's Children's hospital in San Diego. Our midwives wanted to rule out the possibility that Mason was having seizures, and he was born without a sucking reflex. Mason would NOT nurse or bottle feed consistently for 12 days, so John syringe finger fed him milk I pumped around the clock. We ended up having Caleb fly up to spend Christmas with my family so that we could take care of Mason and get him the help and care he needed.  It was an incredibly challenging, stretching, and stressful beginning to Mason's life, and yet through it all I felt like God drew me and John so much cloer together and closer to God. It was amazing to have so many highs and so many lows so close together. Mason finally started nursing so that was a huge win! Our whole family was reunited after a week apart and the transition to 2 kids began!

January 2016
We had a better idea of what was going on with Mason's health, and he had his tongue tie and lip tie released when he was 4 weeks old.  Caleb turned 2 on January 10th, and we celebrated his birthday in late February. Caleb slowly started warming up to Mason and asking him to watch him play, jump, and do belly flops. Caleb had a language explosion at the end of the month that was so fun to watch! John went back to work and I started figuring out this whole "Mom of Two" thing. Seeing Mason smile for the first time was so fun! Caleb became engrossed with the trash trucks and we began making sure we ran out to our alley to watch them every time they came by. Rain or shine. Those trash trucks always have their biggest fan Caleb cheering them on and saying "DUMP IT!!! DO IT TRASH TRUCK!". So fun!

February
Mason had a LOT of CST (craniosacral therapy) appointments in Solano beach, 25 minutes away from our home. It was so tiring taking a crazy toddler and a fresh babe on those long outings, but it was so worth it. Mason became a nursing champ and I could not have been more thankful considering how much prayer, work, and effort we had but into making sure our little dude could nurse. I started taking Caleb and Mason to Pacific Beach Park with a few other moms and it was a blast. Caleb definitely needed to be around other kids his age! We had Caleb's 2nd birthday bash at that same park. Grandpa Danny came to visit and helped me a lot. I was able to sneak in a few quick swim workouts but Mason wasn't too keen on being left at the Y yet. We were able to start giving Mason a bottle after his tounge tie had healed, and he took it like a boss with a little help.

March
My friend Danielle got married and John's good friend Alex got married the same weekend, and we had a blast attending both weddings. I started pumping to donate more consistently because my friend had her 2nd baby and needed a bit extra milk to help her baby out. I started meal planning this month and that really helped out out grocery shopping and we nearly stopped eating out this month! Caleb started getting really into reading this month, and Mason slowly gained the strength to push up on his forearms. Mason started sleeping epic hours at night and I finally felt like I was getting a much needed and well earned rest from all of the crazy weeks we had those first few months.

April
My grandma and Aunt Kate came to visit and we got to use their timeshare afterward! We visitied Cabrillo National monument with them and went on a little hike. We used their timeshare and our friends and their son stayed with us for an extended weekend. It was so much fun and the toddlers had a blast! At the beginning of the month I noticed Mason's forehead had a vertical "bump" down the middle of it, and I started asking my chiro and CST who he should be seen by to take a closer look. We got a referral to see a neurosurgeon for a consultation in May. In mid-April, Caleb was really really sick for almost 2 weeks. He had pediatric herpedic gingivitis, and it was TERRIBLE. It was a rough time. I spent a lot of time on google and worrying a bunch about my sick toddler and my infant with a skull malformation. In mid-April I decided to take a facebook break and that was such a rest for my soul. I had become utterly addicted to my phone and I was craving deeper relationships in my life, and I felt like God was inviting me to peace out from Facebook as a social media outlet. It was the hardest thing to do but it was sooooooo good.

May
Aunt Hope came to visit and Caleb was in heaven. She cleaned our place and it was lovely! I started the process of clearing out our shared patio area to make it more kid-frienly. On May 12th we met with Dr. Hal Meltzer at Rady's. He is the head pediatric neurosurgeon. It was great to finally meet with a specialist who could confirm what I thought was going on with Mason: craniosynostosis. It's a scary word and it can be quite a scary condition when you start to google it. Craniosynostosis is when the skull fuses to early. In Mason's case the metopic suture that runs from the soft spot on top of his head down to his nose is the one affected (see images below!). We learned that he might need an incredibly invasive surgery that involves cranial vault remodeling to correct the fused suture to allow room for his brain to grow and develop typically.  We learned that this massive surgery would have to wait until 9-10 months of age before it would become safe enough to operate. Dr. Meltzer referred us to more specialists, and we started seeing the Cranial Technologies team at DOC band to get him fitted for a DOC band to hopefully help his head shape widen a bit. At the end of the month we met with a pediatric plastic surgeon named Amy Gosman, and she told us Mason likely will indeed need surgery in the fall. It was so hard to hear that. On the upside, we stayed with John's parents for 2 night at the end of the month and that was such a treat! We saw Uncle David for a few hours too.

June
Mason started wearing his DOC band full time 23 hours a day and I painted it to be like a Minion! Everywhere we go I get stopped and people say "Oh my GOSH! That is just the best!" We were given very little hope of this medical device doing much of anything for Mason's skull shape, so we decided to pray. We prayed for healing. For God to move and smooth Mason's forehead through the use of the DOC band. We prayed for a miracle. And God said yes!! By the second week of using the DOC band, the clinician was astonished. She said the textbooks say that this shouldn't happen. So far, the movement and growth that they have seen in his skull shape is incredible and nothing short of a miracle. We are in awe of God! In June Caleb also started taking swim lessons at the YMCA. He would live in the water if he could. But swim lessons were not his favorite. He wants to do his own thing and had a hard time waiting his turn. Gotta live and learn!

July
Well here we are! My brother got married on June 2nd in San Luis Opispo area. It was such a celebration to see him and Kristen tie the knot! Caleb was the reluctant ring-bearer in their wedding. For several days surrounding the wedding we stayed at a beautiful estate with my whole family. It was an extended party weekend and I never wanted to leave. I would totally move into a family compound! July has been fun so far! We have a date for Mason's skull surgery on the calendar for the fall and a few more issues popped up that we are keeping an eye on. He has a concave chest, as well as several developmental delays related to gross motor and fine motor. Mason has most enjoyed rolling over this month and cutting his first tooth. Yay for chompers and babies on the move!

Photos!!! December and early January.....

In Labor! It was a long 48 hours.

My family! A few hours after Mason was born

Syringe feeding this guy

Getting his EEG done, All clear!

Syringe finger feeding. This team was amazing.

Christmas at Rady's Hospital

Our cute guy

These two both wanted uppy.

How we roll at the hospital.

February-March

Swoon!!

You know what he's doing with that face....

Our CST Dr. Chelf! Magic worker!

Grandpa Danny being silly

Happy Birthday Caleb! Hummus and candles. Perfect!

Ruby! His love!

April-May

Trash truck hunting

He loves his umbrella

posed sibling shot

Gammie and Aunt Kate came to visit!

Living the high life at Aviara

Aunt Hope!

The CT scan. Answer to prayer he didn't need anesthesia.

CT results. Metopic (front) suture is fused. His facial features are pinched and his eyes are closer together as a result.

our banded baby!

June-July

I had to make him Mason the Mini Minion!

plotting how to get more milk

Back of the band. "Kingdom Builder. I am fearfully and wonderfully made"

Enjoying some band-free time while reading

This is how I roll!

My brother's wedding

see that smooth forehead?? Thank you Jesus!

My big dude!

bird's eye view of results from the band over 6 weeks. the bottom of the screen is his nose area

we side-cared a crib for Mason and Caleb likes to crash it sometimes