The Beginning-The News

Hi sweet baby girl Payton!  I am starting this blog and writing it for you so that someday you will read this and and see what you were able to overcome during your first special year of life.  I'm also going to use it as a way to update your friends and family during this crazy and emotional next few months.  You have many people that love you and care about you.  They can leave comments here on the blog for you or us, and I will eventually print them and put them in your baby book...someday you'll read and see just how many people have been in your corner since day one!  As I write this, you are sleeping happily curled up in my arms, your favorite place during these first ten weeks of your life.  How are you ten weeks old already!

Your journey with "craniosynostosis" started the day you were born, although we didn't know it until a few months later.  Because of the position you were in when you were born, you had a pretty good sized bump on that forehead of yours!  You were still the most beautiful thing in the world, big bump and all.  Doctors said it was fine and that the bump would go away over the next few weeks so we didn't think anything else of it.  We were too excited to love on you to be worried about some little bump.  Look at how proud your big brother Pierce was to have a sister like you!

 

 Throughout your first two months of life, you met many special friends and family members.  You ate and slept constantly (although you sure didn't let your mom and dad sleep much in those early weeks!)  You also loved, and still love to be held, which we don't mind.  Plus, my biceps are going to look great by summertime. ;)  What we did notice however, was that your "bump" was not going away.  In fact, it seemed like it was maybe even getting bigger. We decided to bring it up to your doctor at your next appointment on March 11th.  In the meantime, you managed to still look so cute posing for pictures, bump and all..... check out your first Valentine's Day photo at one month old. We are all in love!

 
The day of your 2 month appointment came, just about two weeks ago, and your daddy and I took you to see your doctor for your check-up. 

We were going to explain to her that the bump on your head had not gotten better. In fact, it has seemed to get progressively worse. We also noticed the other side of your forehead (and eyebrow) has started looking even flatter, or more recessed. We were ready to bring all this up, but we didn't even have to...she noticed it right away and was concerned. In my head I was thinking, here we go, I bet she needs a helmet, darn! But I'm pretty sure my jaw dropped when Dr. Brockway said it could be more and that you needed to see a neurosurgeon at Children's hospital as well as get an MRI/Cat scan. She vaguely refered to a possible problem with your skull fusing prematurely but wouldn't provide too much because she wanted the "experts" to weigh in.

 

So at that point your dad and I are freaking out.  We don't have a ton of info, and want answers, so what do I do?? Google it. :) Someday Payton, you'll know what that means....or maybe something will have replaced Google by then, who knows!  Anyway, it was a dumb idea cause there's so much out there that can be scary to read about.  But I came across some info and photos of babies on some reputable medical websites and my heart sank...I thought, "Those babies could be Payton! Same head shape, one eye more open than the other, nose barely tilted to one side." In my gut, I knew I'd found what was wrong. I guess though, knowing ahead of time (at least partially) helped me process it more and be more ready for what we were going to hear at Children's.

On Monday, March 18th, we braved terrible stop and go traffic (your dad HATES Denver traffic and says he will never get used to it...he's such a country boy!) We arrived at Children's Hospital in Denver and met with your pediatric neurosurgeon and plastic surgeon (two of the BEST in the country that specialize in this and other similar things) and they confirmed it. "Payton has a birth defect called craniosynostosis"...no specific cause of this defect, just a 1 in 10,000 random thing for your specific type. The doctors continued, "There are a few different kinds of cranio, Payton's is "coronal", also called "anterior plagiocephaly" sometimes.  Basically, one part of her skull fused together too soon and is not expanding with the rest her skull, thus the head shape."  

 

Arial view of Payton's skull. 
The right side toward the front is where the
skull fused prematurely at one suture, causing a flattening look.

 

 Payton, I just held you tight and listened trying to hold it together. Your dad, tough guy that he is, was so strong listening to this but I could tell it was hard for him to hear.  The doctors reassured us that the fused suture or part of the skull is NOT causing you pain or pressure on your brain (so no developmental delay or brain damage THANK GOD!!!!) We were stressed about that possibility all last week.

So now for the bad news. The only way to fix this is surgery on your skull...otherwise it will continue to get worse over the next few years and make your head, forehead and brows look more abnormal.  Doctors also warned that your eyesight could be affected too because of the eye sockets not being aligned.  Payton, you will always look PERFECT no matter what in our eyes, but we don't ever want you to have to endure something difficult for your entire life if you don't have to. So we know that surgery is the right thing, even though it will be hard on all of us.

 

The good news is that this surgery has a very good outcome and by the time you are two or three, no one will know just by looking at you that you ever had any big surgery.  Even the scar will be covered by your pretty hair.  During surgery, the doctors will go in and open the suture or part of the skull that fused (so it can expand as your brain grows in the next few years.)  They will also reconstruct both sides of your forehead and eyebrows/orbits during surgery. You should only need ONE surgery and they want to do it while you are between 3-6 months old, so very soon.

Surgery day is scheduled for May 23rd, when you are four months old.  We'll get to stay down there with you for the four days that you'll be at Children's and then recovery at home should be fairly fast.  Doctors said it is amazing how fast babies bounce back although your sleep and eating patterns may be off for a few more weeks...hah! Your sleep patterns are not "on" anyway yet! :)

 

So how are we, your mom and dad, feeling about everything at this point? It is going to be very difficult to see you right after surgery if you are even the slightest bit uncomfortable, let alone in pain or not understanding what happened to you, but we will not leave your side. No parent wants their baby to go through anything tough. We've already experienced so many emotions...numbness, fear, stress, sadness, but eventually even relief and acceptance.  We feel better knowing you are in such good hands...literally people bring their babies to this hospital from ALL over the region for this. Your great doctors know what they are doing and will take great care of you!  It doesn't mean we won't still have our emotional ups and downs leading up to surgery day and beyond, but we are ready to face what's ahead and we know you and your family will be strong!  We have a great support system and people love and care about you!

 

We have faith that all will be good. And we love you unconditionally, forever.