3 weeks post-op.

And 1 week in his helmet. He is now wearing it full time and doesn't seem to notice it too much. I am still in awe of how much his head has changed in the last few weeks, he looks like a totally different baby. And I think you will really have to look for that scar eventually. Please excuse his ugly hair cut. I trimmed the front but couldn't bring myself to cut the back yet. It's such a pretty color and it gets all curly when I wash it. It will probably go later this week:(. This will also be my last post for a while. I will update every few months for the next year. I was so grateful for other mom's who blogged about their journey's with craniosynostosis. It was always such a relief to read their stories and see the results, and happy endings! Thank you so much to everyone who has loved, worried, and prayed for Everett with us. He is a lucky little guy to have so many people who love him (as are we)!

What a difference! I'm so grateful we live when we do. A little miracle for our little guy!

Dark blue=Purple

We started helmet therapy on Tuesday. So far Everett is not a fan. He is having a hard time sleeping in it, but I'm guessing he will get used to it soon. It has been an adjustment for me also. It is harder to snuggle him and I miss kissing his little head. But he does look really cute! They gave us an option of ordering the helmet with a color and design, so I picked dark blue. Simple. Manly. Why didn't the guy tell me it actually looks purple?! Especially in the sun, seriously. Oh well, I put a motorcycle on it and some trucks, do you think that makes up for the color?!

Also, amazingly, I have already noticed a difference in his head shape. I was freaking out because I thought his bone had grown back in the front of his head, but then I realized his soft spot was just further back. Which means his forehead is not growing forward anymore and his sides should be filling out as well. He is not even in it full time yet! He's on his way to a beautiful head!

Steri-strips are off!

We had a follow up appt. on Friday. Everything looks great, his scar is pretty gnarly.

Our very favorite neurosurgeon! Dr. Michael Muhonen. He is a hero in our book! Nicest guy you'll ever meet, and funny too.
He had me take this picture of him and Everett. He says they have matching heads!

1 week post-op. Kinda.

Everett is doing wonderful! He is totally off all medications! I don't think he has any idea his head was cut open one week ago! Here are some before and after shots. (And these pictures are not the greatest, sorry). The ski slope profile is gone and his forehead is much smaller. The results will continue to get better and better with time and especially after helmet therapy.

Arrrggg, these pictures are not lining up like I wanted them to, but you get the idea...




































He also went and got scanned for a helmet. It was so cool, they put him in this little machine and it took 1.5 (honestly) seconds for all these lasers to scan his head. His helmet will be made just for him based on the scan. We will get it on Monday. Can't wait!

Look Who's Home!

And you can see how he feels about that!

Everett was doing so well, they gave us the option of staying one more night or going home. After our "interesting" night Tuesday in a shared room, we were so ready to get out of the hospital. Everett is doing great with just Tylenol and probably won't even need that in a couple days. The doctor was amazed at how little swelling he had. Usually these babies swell so much they can't open their eyes. Thank you! We feel so blessed!

We are taking Everett to get fitted for a helmet today. Even though he had the open surgery and probably doesn't need it, we requested one, for safety reasons. And I already can't wait to get it, I'm having constant heart attacks!

After.

Not so fun. He was in so much pain, his heart was racing and the morphine did not seem to help at all. They started giving him Tylenol and Motrin and he settled down sometime last night. His head "turban" came off four times during the night, which made the drain in his head fall out. Rough night, but he is doing much better today.

This is how he looked right after surgery. Poor baby!

Getting his blood transfusion. One of our lovely donor's blood, we don't know who yet, thank you, thank you!

He likes to be held and rocked, and he is eating great today as well.

No words for THIS. Sorry to the weak of stomach.
I have to get back to the hospital and I can't get onto blogger, but I will try to update when I come home for breaks.

Before surgery.

Here is Everett before surgery. He was so happy and good, even smiling after 5 hours with no food. Handing him over to the O.R. nurse was the hardest thing I have ever done (so far). I kinda wanted to run the other way with him.

Oh, I'm sorry, but how cute are the little hospital gowns!

Surgery Day

It was a long day, but we are through the worst part! The doctor ended up having to do the open procedure because the bone was so thick, so we were a little sad about that, but we feel like he made the decision that would be best for Everett. Needless to say, he is a very sad baby and it has been hard seeing him in so much pain. He is getting a blood transfusion right now, and looks much better because of it. He will probably swell quite a bit in the next 24-48 hours, but should be able to come home by Thursday. I can barely keep my eyes open so I promise I will write more and post pictures tomorrow! Thank you all so much for the prayers, thoughts, emails, and support. We have felt so much love and I know it has made me stronger through all of this! We are so grateful everything went well and his head already looks so much rounder! I have a newfound respect for surgeons. Amazing!

Labwork and my meltdown.

Yesterday was hard. I feel like I have kept it together pretty well the last couple of weeks, but the last few days I have been on edge. Then Matt called me and told me he was feeling uneasy about everything, and that did it. The string that was holding me together snapped and I fell apart. Unfortunately for my sister, it happened right before I got on the phone with her. Thanks for bearing the brunt of my stress JJ, I know you have enough of your own. Thank goodness for prayer and love from family and friends. By the end of the night I felt calm and peaceful again.
We went and got Everett's pre-op labs done this morning at the children's hospital. When I got there I walked past the oncology and cancer clinic. All I had to do was read those words and I promised myself I would keep it together from now on. Because what WE are dealing with is easy, and we are so BLESSED.

Although I will definitely need a box of kleenex when I have to hand my baby over to the surgeon. But please don't judge me for that.

One more day!

Blood buddies.

Everett and I gave blood yesterday. Well, he only gave a teaspoon, but it was awful. They couldn't find a vein so they were digging around in his arm while he screamed. Finally the guy gave up and got enough with a heel prick. Matt and I have to give blood and hopefully one of our blood types will be compatible with Everett's in case he needs a transfusion. I like the thought of him having our blood in him over a stranger's, plus it's one more thing I can hang over his head when he's a disrespectful teenager.

We are going to do the surgery here at CHOC. Dr. Muhonen is the chief of pediatric neurosurgery there and he will be performing the surgery. I talked to two very sweet moms whose kids had the same surgery Everett will get. They had nothing but wonderful things to say about the doctor, hospital, and nurses. It made me feel so much better about everything!

So, surgery is set for Monday March 15th at 8:30am. Everett will not be able to eat for 6 hours beforehand, which I am not looking forward to. The surgery should last about 2 hours from start to finish. He will stay in the hospital for 2-3 nights depending on how he's doing.
I can't wait for all this to be over and to see Everett's new and improved head:)

Desicion.

Thank you, thank you for all your wonderful emails, phone calls, comments, prayers and thoughts! We feel so loved and supported! I can not tell you how much they have helped! I wish I could be more on top of things and respond to all of them!

After meeting with the neurosurgeon again today, we have decided to go with the endoscopic version (limited CVR) of the surgery. We feel very comfortable with our decision and are so grateful that our pediatrician caught it early enough that we are able to do it this way. The surgeon said he usually does not get these cases until the kids are 1, and then it's too late to do the endo version. Right now surgery is scheduled for Monday, March 15th with a doctor here in Orange County. That's the plan for now, unless we decide to go with a doctor in Texas (Dr. Jimenez, he is the dr. who pioneered this type of surgery and has done tons of them). The only problem with Texas is we could not get the surgery done until April 8th and we know that the earlier we can do it, the better.

Here is an animated video of how the surgery is done.

After watching it, you can see why I am actually really happy he will be in a helmet, since half his skull will be gone! Especially considering his older brother seems to think if he can pick it up, it should be thrown. (Preferably at something breakable).
SO, that's the plan. Yikes, I'm getting nervous just thinking about it. Thank you again for all your support!

Choices.

I met with the neurosurgeon on Friday. He was really great, answered my many questions and reassured me that they do this type of surgery all the time. I felt so much calmer after talking to him and becoming more informed. He also gave us a choice to do the surgery one of two ways.

1. Endoscopic surgery, which is less invasive, has less scaring and blood loss and a faster recovery time. It is a relatively new procedure and this doctor has only done it 15 times, total. The downside to doing it this way is the surgeon can not see everything as well and it takes much longer to see results. Everett would have to wear a helmet 23 hours a day for a year.

2. Open surgery. In this procedure, they make an incision from one ear to the other and pull the scalp back to cut out the fused skull bone. Surgery is longer, more of a chance of blood transfusion, and a longer recovery time. But, results are immediate, so if he had to wear a helmet at all, it would not be for long. Plus the surgeon can see everything better during surgery.

The surgeon is leaving the decision up to us, which means we will be praying like crazy to feel peace with our decision. He also wants to do the surgery in the next week or two. The earlier the better. In fact they can really only do the endoscopic surgery until he is 3 months old. But he said Everett looks really healthy, and he has "really great tone for a baby his age". Meaning he is not a sloppy baby and has no signs of any of the genetic diseases that often accompany craniosynostosis. Also, his coronal sutures have not fused, so all in all it was a positive meeting!

Here are some pictures of Everetts head. His brain can not grow out, so it is growing front to back. It is textbook sagittal synostosis head:).





I love this picture with his cute little eye peeking out.

Diagnosis.

Our sweet baby boy was diagnosed with Craniosynostosis this week. Basically that means the sutures in his skull fused too soon and are causing irregular bone and brain growth. You can find more information on that here. We know his sagittal suture is fused and possibly part of his coronal. Tomorrow I will meet with a neurosurgeon at CHOC, they will run a few more tests, and get more information on his specific problems. Everett will definitely need surgery, probably in the next month or so. The surgery consists of cutting out the fused bone and reshaping the remaining bone, so the brain can grow and develop. Without surgery, the brain would most likely be damaged and the shape of his head would become more and more deformed.