7.21.2016

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

3 comments:

  1. Thank you for sharing your story. Your family is beautiful and the love so strongly felt through your words.

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  2. I read this today and shared the photos with N. Thank you for sharing your story and continuing to have courage and a positive attitude. What a blessing you are to your family, and they to you! <3 (Angela + N)

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