We have a plan

Bryce's surgery will be on December 10th at 7:30 in the morning.  We will have a pre op appointment with Dr. Myseros (Neurosurgeon) on December 5th.  We will also donate blood on the 5th at Children's in DC.  We are all O+ so hopefully nothing will be wrong with our blood and he can have ours.  We are only allowed to give 1 unit each, and Bryce only needs 2 units for his surgery so we should be all set.

I thought I would feel a great sense of relief now that the surgery was scheduled....

I am happy we have a plan and can schedule things but also feel nervous/anxious/sad because now that there is a date, it feels very real.  Most days I'm fine and am very positive about the whole thing.  Then I have days like today....I'm sad and nervous and angry that he has to go through this.

So since I have nothing positive to say I'm going to stop writing.  Anyone ever seen Debbie Downer on  SNL?  I feel a little bit like her today.  But I can't help but crack a smile at this skit.  Everyone is totally cracking up.  And who knew Debbie herself had a 2 year stint at Children's?!

http://www.nbc.com/saturday-night-live/video/debbie-downer/n11825/

Grateful

It was weeks ago that I sent the link out to family and friends about this blog and the response we got was SO amazing.  We are extremely lucky to have such wonderful people in our lives and couldn't be more thankful!  We've received visits, calls, emails, texts and so much love and support.  We truly are blessed to have so many people thinking and praying for Bryce.  Thank YOU!  We love all of you!

Bryce turned 5 months old on the 14th and is rolling over a ton,  loving tummy time and trying to sit up by himself.  He also loves to jump up and down either on our lap or in his exersaucer.  He likes to pull my hair (and Kaylin's!) and is still spitting up like a champ.  He's very into grabbing our faces as well.  Nothing makes him happier than a nice slobber on Ray's face.  It's so cute how much he loves his Daddy.  He probably looks at Ray and thinks, "Man, my Daddy looks just like me!"

We are still waiting to hear when Bryce's surgery will be scheduled.  I called earlier this week and talked to both surgeons' schedulers.   Hopefully we will have a date by the end of next week.   The plan is still to have surgery in about a month when Bryce is 6 months old.  It's less than a month away and the anticipation is not fun.

In the meantime we scheduled an appointment with the ophthalmologist.  We go to DC Childen's hospital on November 5th to meet with Dr. Hutcheson, and will (hopefully) come away with a baseline on Bryce's vision.

I was finally able to get some pictures of what Bryce's head looks like. When you look at him straight on it's sometimes hard to notice but looking at him from above you can definitely see how uneven his forehead is. His surgery will adjust the left side to be even with the right.

Plastic Surgeon Visit

I keep thinking these appointments are going to get easier but they don't.  Now that I know more, I'm more upset that we didn't insist on getting Bryce help sooner.  I keep going back to Bryce's 2 week appointment and wishing I would have done things differently.  I wish I would've insisted that they refer us to someone instead of just listening to the pediatrician and waiting to see what he looked like at 2 months.  I know I'm torturing myself but I can't help but wonder what Bryce's suture would've looked like so young.  We learned yesterday how great the endoscopic surgery is -- or could have been.  30-minute surgery, small incision, helmet afterwards -  and that surgery has better results in fixing all his facial abnormalities (his nose is crooked, ears are misaligned, chin is crooked) and is obviously less invasive.

The surgery is usually only performed on babies up to 5 months of age but it all depends on what the suture looks like.  Unfortunately for us, Bryce's suture is completely closed from the top of his head all the way down to his eye.  So the endoscopic surgery is definitely not an option.  In hindsight I kind of wish now that I didn't know all the wonderful parts of that surgery. We had a shred of hope that the endoscopic procedure might still be an option, but now know we're planning for an open surgery.  No matter how much we learn about it, it doesn't get any less scary.

Dr. Rogers asked us if we wanted to know all the details and we said we did, so I guess we had it coming.  It's just hard to hear that he could have had an easier surgery.  But then again, maybe not.  Ray keeps reminding me that his suture could've been completely closed when he was born.  We have no way of knowing, so I guess I should stop torturing myself.  Mom guilt sucks.

Things we learned from this appointment:

• Dr. Rogers agrees with Dr. Myseros and wants to do a unilateral frontal orbital advancement to open up the coronal suture that is closed.
• He would like the surgery to be closer to 6 months of age, so around mid November
• Bryce needs to see an eye doctor to check his vision
• He tilts his head slightly, which we thought was due to the torticollis but it's more likely because his eyes are offset (ocular tilt) and that's the best way he can see :(  Problems with vision are likely as Bryce gets older.
• After surgery and Bryce's forehead is straighter/more even we will probably notice his facial abnormalities more.  Fabulous.  
• Dr. Rogers said there is no way of correcting it because his entire face is shifted.  It probably won't be severe enough to try to correct down the road.
• We could still put Bryce in a helmet after surgery to help with the flatness on the back of his head if we want.
• His scar will heal very quickly and should be very thin. His hair will not grow on the scar but if his hair is long enough it will cover it up.  Dr. Rogers said if his hair is a short as Ray's we'll be able to see the scar. (Ray says chicks dig scars)
• The eye doctor he wants us to see is booked until December, but Rogers is going to get Bryce in.  Good to know people I guess :)  Dr. Rogers wants us to have a baseline prior to surgery.
• Next steps are to see the eye doctor, schedule the surgery date, and find out when we can donate blood.  He said blood donation is 2 weeks prior to his surgery date.  Very soon.
• Dr. Myseros and Dr. Rogers will follow up, discuss their opinions on how to approach Bryce's surgery, and get back to us on when/how to proceed. 
• On a lighter note, Dr. Rogers is quite good looking!  Even Ray commented on his looks!  But I guess good looks are a criteria when you're a plastic surgeon.  He likes to talk, explain all the research he's done, his approach, the doctors he's worked with, his time at Boston Children's Hospital, etc. etc.  He's obviously very intelligent and the head of plastics for a reason. 

Dr. Rogers worked with Dr. Proctor who is in this video. Explains all the different types of craniosynostosis, treatment, etc.  Great video:

http://www.youtube.com/watch?v=8l53va7jAzI

Can you feel the brother sisterly love? They melt my heart every single day!  Bryce is so in love with his big sister and as you can see the feeling is mutual.  They're so sweet together. 

Bryce weighed 17lbs 8oz yesterday.  10 days short of his 5 month birthday.  He is a tank and definitely fits his nickname, B Chubs.