A Neurosurgeon

Today was the much anticipated neurosurgeon appointment. I am still being overwhelmed by messages of well wishes every day, and surprised at how many people remembered today was an important day for us. Our appointment happened to be at 2:30 in the afternoon. I felt like the whole morning dragged by. And after finally arriving at yet another new medical building, we got to fill out 30 pages of health information. Someone needs to come up with a baby package so I dont need to check the no column in every category possible. This is the beginning of my health care rant and I’ll end it there for now, though I could probably go on for pages and pages.

Our doctors PA examined Sawyer first, he was in a great mood and it was nice to see her want to entertain him with her Id cards. The surgeon followed soon after. Her first words out of her mouth was what a little adorable red head in room 4 as she barely opened the door before someone in the hallway asked her something. She did a very brief visual and physical exam and confirmed the diagnosis. Surgery is mandatory. I handled it much better today. Because I went in knowing the outcome. This time I was able to ask a million and one questions and she patiently answered each and every one. And offered to sit down with us again if we had any between now and the surgery. It will be in the early May time frame. Before we can schedule the surgery we have to see a pediatric plastic surgeon. I’m going to start losing track of how many Dr.’s we are seeing. And even though we have health care we have to wait for the appointment to  be approved by our plan. {I’ll never understand American health care.} So that should be somewhere in a 2 week time frame. He will then make the call on whether we still need a CATscan or just go straight to surgery. At least we have confirmed there will be no need for an MRI anymore. Wonderful news to me! One less sedation and Hospital visit.

However we will be spending some time in a Hospital. The surgery will take place at one of the teaching hospitals in Las Vegas. 2 surgeons, 2 PA’s, an anesthesiologist, and at least one resident. {Just so you know in my head I’m picturing the cast of Grey’s anatomy when I think of surgery. I mean McDreamy and McSteamy would be doing this particular surgery. If only that were true!} At least I can still find humor in tough experiences. We will have one longest morning of my entire life while we wait for this little baby to be operated on. She told us to expect a 7:30am appointment time and hopefully be able to see him again post op at Noon. 4 1/2 hours. I don’t even know how I will pass 16200 seconds that each feel like their own hour.

I’m going to go into some detail about the surgery now, so be warned to skip this paragraph if your queasy. MOM JUST SKIP IT! Seriously. Ive talked to 2 women in Canada who have gone through the same surgery. However today we discovered its not at all the same surgery in a different country. They will begin by making a zig zag incision from ear to ear. They do this for hair growth to remain as normal as possible, as it will never grow again on the scar. Thus they are going to shave off all that beautiful red baby hair 🙁 Here’s where it gets graphic. {MOM STOP READING.} They will peel his entire scalp back to his eyebrows and neck. Now you see the need for the plastic surgeon. They will then take every piece of the skull apart, and re-piece it back together like a mismatched puzzle. They do this to reshape the head since craniosynostosis creates head shapes that are long and narrow.Which later in life can lead to simple problems like never having a helmet fit, so no bike riding or sports. Because they do this in surgery there will be no need for him to wear a helmet in recovery, which is a big distinction from the Canadian surgery. Although it is more intense, so we will likely have a longer recovery.

We will spend a minimum of 4 days in the Hospital. They will also keep him sedated longer than the Canadian procedure. He will have a hard recovery. His face will swell and bruise. His eyes will be swollen shut for the first couple days. I thankfully have seen first hand pictures, so I know what we are heading into. It is perhaps why I am so calm right now. These days are nothing compared to what that week will be. And again I am aware that this is nothing in the long run compared to what some families are going through with younger babies and children. Much like the quote :”If we all threw our problems into a pile and saw everyone else’s, we’d grab ours back.” Its so true.

We are extremely lucky to have such a strong support system. Our family here has been very caring and we will be seeing both grandma’s in the next 2 weeks to give this little boy some love while we wait. Which will definitely help pass some time while waiting. And I truly appreciate all the loving messages, cards and tokens of Love. Tulips long distance from Canada, that brightened the day and reminded me of a man who always saw the sunshine in gloomy days. A care package still in route. And last weekend Sawyer received a special little surgeon bear from the family I used to work for. It came with a card from their little boy who was born the day after Sawyer. I cried through the simple well wished card that ended with “I am with you every step of the way Buddy, Love Jack” From those huge gestures to every little simple message that just said we’re here and we send love, Ive never experienced such a grateful emotion. I can’t describe how lucky I feel, that even though we will go through some crappy days ahead, he will be ok, and he is ever so loved. Thank you for loving our precious little life.

Again I will be updating this as we go through this process. So read along if you want to but dont feel obligated! I just like to share my life like an open book and this is going to be one hell of a chapter.


I dont even know how to start this post. When I wrote about Sawyers Diagnoses, it was more of a comfort for me to get it out. I never expected the amount of support we were given. We both come from close families, but its always nice to know that love is strong. We’ve had close friends, old friends, and friends we haven’t talked to in years reach out. In fact I have had friends of those friends sharing their own experiences with craniosynostosis.

The first day I posted about our heartbreak, first I was so surprised at how many of you read the blog without me even posting it to facebook. And after sharing it on facebook I left my computer for only 30 minutes to put Sawyer down for a nap. I came back to find my computer lit up with  messages. I cried through most of them. Just deeply touched at how many of you put your heart out with love and support. I found a quote online after Sawyers Appointment when I was feeling really down. “Shared joy is double joy, shared sorrow is half a sorrow.” I felt like it was exactly true. I have felt so lifted since sharing what we are going through. Ive had flowers sent to us to brighten our day, cards and even received a little teddy bear with scrubs on. He will definitely be accompanying us to the hospital.

We have an appointment on Wednesday with the neurosurgeon. I’m actually looking forward to it, and getting some answers. I will again update after the appointment about any changes. Until then we are just enjoying all the little moments. He is changing in so many ways and I’m not going to miss any of that worrying about the future.

Again just a huge thank you for all the well wishes all of you have sent Sawyer this week.

5 Months and a Neurologist,

Sawyer is 5 months old today. He has grown so much in such a short amount of time. Sometimes I feel like I blinked and it happened. How is it even possible to grown that fast. I love him more every day. He’s learning and doing new things. He can roll! And can he ever laugh. I love that little laugh. And though he’s getting bigger he’s still so little, so very very little. Much too little to see a neurologist. And yet.

On Friday we saw one. For what I thought was going to be a simple check. Our pediatrician recommended us because Sawyers head is in the 99th percentile. She said it was most likely a routine check and probably just a family head size. That’s how I went into the appointment. The actual appointment in my head sounds like the teacher from the peanuts cartoons. And as I walked out carrying this little precious baby the words started to hit me. “Craniosynostosis, Your sons soft spot has closed 13 months too soon, MRI, CATscan, Neurosurgeon, Health care, Risks.” There was a thousand more things said and though I can wiki Craniosynostosis. I still dont have solid answers. So we wait.

We wait, and we wait ,and we wait, and we wait.

That’s the part that’s killing me right now. Not knowing anything and waiting. Which is why I am sharing this. Its the only thing on my mind, constantly on my mind.  And if I have to wait this long I can’t not talk about it. We have an appointment to see an neurosurgeon next week. Sometime in between we should get some info on booking both an MRI and a Catscan for him. Then we will discuss surgery.

And the thought of surgery on my little teeny tiny babies head makes me physically sick, this situation has only truly made me realize how lucky we are. Its scary beyond what I can comprehend but its treatable. So many parents get worse news and awful outcomes. We will deal with this and he will still be a healthy happy boy and for that we are extremely fortunate.

I also wanted to say how loved we have felt the last few days. As we started to tell close friends and family, I was very touched at how many reached out to us with love and support. Without that support we would not be seeing a neurosurgeon this fast. We don’t have many friends or family in Las Vegas but the few we do have have done so much for us already. (Thank you so much Matt and Jess.) And of course I could none of this if the one person I love more than anything wasn’t right there by my side the whole time. I am lucky enough to have a husband who is able to attend all these doctor appointments with me. And even though we are having some crappy days, he can not only make me smile but laugh until my sides hurt. I would be nothing without him and I would be a mess right now.

I will keep this updated for those of you who want to follow our story. After all its all I can think of 24/7. Every time I hold that chubby baby with the smile of gold that melts my heart. So for now we’ll keep waiting, and smiling. Life even with its roller coaster rides is still a beautiful thing.