4 Months Post-Op

You can really see that Luke has started to grow into his forehead. There's a lot less protruding going on in the front and back of the head.

There are 2 V-shaped scars. The back one it still quite obvious but his hair has started covering the front one. About a month ago Luke caught a small piece of scab in his mesh crib bumper while sleeping. It created a new wound that is healing quickly.

Another shot of the back scar. It looks like his hair will cover everything nicely.

We are visiting Dr. Thompson on October 31 to hopefully schedule our spring removal. Shooting for early November!

Surgery Day

Tuesday, May 24 finally came. Josh and I carried our sweet boy down a long corridor to a small pre-op cubicle. They had me take his jammies off and dress him in the tiniest hospital gown I've ever seen. 4 or 5 doctors, nurses and anesthesiologists came and asked me what seemed like the same questions over and over. No, he doesn't have any allergies. No, there are no blood disorders. Yes, this is his first surgery. Yes, his name is Luke. His birth date is 1-12-11.

We held him so tightly in our arms and took turns praying, our tears dripping all over him. I didn't care who walked in the room or who saw. We did what we do. He smiled at us, oblivious to what was about to happen. Questions played over in my mind... Will he be angry at me? Will he think that we are hurting him? Does he know that I love him?

Eduardo, the awesome pediatric anesthesiologist, was the last person to talk to us that morning. He gathered Luke in his arms and headed down the hall to the OR, having a very animated one-way conversation with our little guy as he went. We stood there watching... beside ourselves with anxiety. Then Eduardo stopped and turned around, took Luke's little hand and waved it in the air, "Bye bye Mommy and Daddy, see you soon!"

That darn Eduardo... so much for holding it together.

Almost exactly 90 minutes later the surgeon appeared in the waiting room with a smile on his face. Everything had gone according to plan and Luke was in recovery. The small slivers of fused bone were removed and "springs" put in place to allow things to shift and grow. There were many sighs of relief. One hurdle down.

 I really wasn't prepared for how Luke would look after surgery. I had read some stories that talked of extreme bruising and swelling, tubes and cords. Luke had several "attachments" to monitor his breathing and heart rate. He had an IV in his arm and another one in his foot just in case the one in his arm failed. There was an "ET" light on his big toe and his arms were in braces to keep him from touching or scratching at anything. His head was bandaged and his face looked greasy from the ointment they'd put on his eyes. He was extremely drowsy. When he did wake up it was usually momentarily and I'd rush over to try and get him to eat from a bottle. He whined a lot and it was a really pitiful groaning sound (caused by the breathing tube used during surgery). I would start to sing the song I sang to calm him when he was a newborn (Jesus Loves Me) and he would immediately calm down.

After the big bandages were taken off.

Finally drinking some juice for Daddy.

I kept track of everything he ate and all diapers changed as well as his pain meds. I found it comforting that I could watch for signs that he was in pain and keep his meds on schedule. This helped to head off any sudden crying outburts related to pain. He was on Morphine for the first few doses and then started Tylenol with Codeine by mouth the next day.

New helmet!

Dressed and ready to go home!

We were sent home late in the evening on Wednesday. I wasn't ready to leave because I wasn't sure if I was capable of taking care of him like he needed. He was so swollen. He wouldn't smile at me. That night I slept in the Living Room with him next to me in the bouncy seat. I brought his arm braces home so that we could be sure he wouldn't pull at his bandages.

Thursday he woke up swollen beyond recognition. He had little slits for eyes and his poor head and face looked big enough for a 3 year old. But he was smiling.

Standing in our laps and smiling again!

The swelling was rough for the first couple of days.

Friday, he started trying to "stand" in our laps. He's was very alert and the swelling was almost completely gone.

Luke will need to have another procedure to have the springs removed 4-6 months from the date of the original surgery. Until then he has wear a protective helmet any time there are children around or any time we're driving in the car. 

First Outing! Heading to see Dr. Thompson for surgery follow-up.

 We are so thankful for a great outcome from surgery. Luke will see the surgeon for check-ups monthly until his spring removal.

That Scary Day - Diagnosis

I walked into Luke's 3 month well visit completely unassuming. My in-laws had mentioned that Luke's head looked a little big but I just laughed and said "the bigger the brain the smarter the kid!" I mean, I'd heard so many other Mom's say "My poor kid had such a big head. Thank goodness they finally grew into it!" Why should I worry about there being anything wrong with him?

Our pediatrician walked into the room and immediately said, "Well I noticed when you walked by me in the hall that Luke's head is abnormally large."

Cue the panic.

He re-measured Luke's head (the nurse had already taken a routine measurement) and confirmed that something wasn't right. He started showing me charts and percentages... I heard nothing.

I asked what all of this meant. He said he was afraid that Luke either had Craniosynostosis or Hydrocephalus and that he was sending us for a CT scan. I texted Josh "Docs worried about Luke's head. Something's wrong. We need a CT." Cue the panic for Josh.

I left there feeling numb. I hadn't asked many questions because I didn't know what to ask. I had a knot in my stomach and all I wanted to do was sit and hold my baby.  I got online and started researching CT scans on infants and, of course, found articles about the dangers of radiation exposure and cancer. I called our pediatrician in a panic prepared to argue that dangers of the CT outweighed the dangers of his possible diagnosis. He assured me that they did not... and as I started to sob on the phone he calmly and lovingly began to explain that we had to find out what was going on for the well-being of our baby. And so we went.

Luke, thankfully, slept through the scan. They allowed me to have a dark and quiet room to feed and rock him before they took him in. I laid him down in a tiny cradle-like positioner and he didn't move. The scan was over in less than a minute. The radiologist called our pediatrician with the results in less than an hour. Sagittal Craniosynostosis. We were sent to a specialist in Winston Salem.

I wasn't told, and didn't think to ask, what type of specialist we were to be seeing. I assumed it would be a pediatric neurosurgeon but was surprised when I received a call confirming our appointment with a Cranio-facial Plastic Surgeon.

Dr. Thompson was amazing. He spent as much time with us as we needed and answered all of our questions. He explained that Luke was an excellent candidate for Spring-mediated surgery. (Check this link for a list of treatment options) He said it was the least invasive option, had a very short recovery time and didn't require helmet therapy (to help shape the head).  Dr. Thompson has been doing this surgery for years with excellent results. His oldest patient to have had the surgery is now 16 years old and is perfectly normal. So we schedule the surgery for May 24, 2011. Luke would be 4 months old.

This is the diagram I found and added the green areas to help our family visualize what was going on in Luke's little head. The fused areas were only allowing Luke's head to grow front to back so his forehead protruded greatly.

Luke at 5 weeks old

Luke at 7 weeks. My niece Madelyn calls this photo "Boom boom fire power!"

Luke at 10 weeks old

Luke at 17 weeks. I wasn't very good at photographing his profile.

A New Idea

When our son Luke was diagnosed with Craniosynostosis 6 months ago I immediately started scanning the internet for others who had dealt with or were dealing with the same diagnosis. I came up empty handed. And to make matters worse, most image searches for Cranio turned up photos of untreated cases, which were incredibly scary for me at the time.

Luke on surgery day.

Since our diagnosis I've been contacted several times by others who have family and friends facing Cranio treatment for their babies. I'm hoping that by starting this blog I can help create a place for us to share our stories and photos and general encouragement for each other, no matter the specific diagnosis or treatment path.