Thursday, January 14, 2010

Four months post-op!

I haven't written an update on Mason for a while, so here comes some nap-time blogging. Mason is doing absolutely wonderfully! We are happily living life, and Mama is not spending every second worrying about her boy's head...a much welcome change. In fact, some days go by that I don't even think about it. He's climbing on everything in the house, putting words together into sentences, and learning so much every day. We had our first post-op check up in Dallas back in November, and Dr. Fearon said he looks great, he's very pleased with his head shape, and he doesn't need to see him back until he's 5!

I am confident that we made the right decision to go ahead with the surgery, though it was the toughest decision of my life. I know that is was right for Mason. Within days after the surgery his vocabulary just exploded. Coincidence? Maybe, but I don't think so. It might have been increased pressure in that area of the brain, or maybe the reduced blood flow along the fused suture, but my mama intuition tells me that the fused suture was definitely affecting his language ability. Also, before the surgery he used to pull on the back of his head and fuss. He has not done this one time since the surgery. And the shape of his head...what can I's perfect. (I've no doubt in my mind that Dr. Fearon is not just a surgeon, he's an artist). His head will always be slightly narrower than some, but completely within the scope of normal. Hats fit him great now and we won't have to worry about helmets not fitting later in life. Most importantly, Mason's brain has plenty of room to grow, and we don't have to worry about what consequences raised pressure might have on his development.

I know, I know, you want to see pictures. As soon as I find my camera cord I will post some recent photos of our amazing Mason J and his beautiful head. Love to you all and many, many thanks for your support before, during and after the surgery and our time in Dallas. I can't imagine going through something like that without family, friends and community.

Tuesday, September 22, 2009

Some photos from the last few days

Nice looking-head, and more importantly, plenty of room for his brain to grow!

He definitely has his appetite back, it's lot of work to build that blood back up.

The swelling is almost gone here.

Playing with cousin Clarissa.

Playing in the pool! (Don't worry, the doc approved it.)

Fun times in the pool.

Thanks for the balloons Student Affairs! Mason loves them!

Cooking with some strawberries.

And a few more...

Papa is happy is baby boy is doing so well.

Resting peacefully in mama's arms.

Tubes, wires, monitors.

More pics from the hospital

We just got the news that he was out of surgery.

Dr. Fearon and crew come to tell us how the surgery went and what to expect when we see him.

We finally get to see him!

The amazing Dr. Fearon checking in on us.

A little Moby wrap comfort.

The first time he showed interest in something after surgery.

First attempt at solid food.

Checking out the world.

Aaron hiding after a sleepless night.

Monday, September 21, 2009

Recovering in Austin

We're spending a few days in Georgetown at my parent's house so we can all have some R&R before we make the road trip back to Alamosa. It's so nice to have this time to give Mason our undivided attention without the daily schedule of work and household chores. Mason continues to do really well. It's amazing how fast these little guys can bounce back. He still has a little purple on one of his eyes, and some big circles from not sleeping very well, and the very back of his head is still swollen and squishy with fluid. The surgeons said it might take weeks for all of the swelling in the back of the head to go down. I'm trying to remember that recovery is not usually all uphill, but mostly uphill with some steps back occasionally as well. Yesterday was a great day, with Mason playing, and smiling and laughing more and more, but today he has been very fussy and clingy. Lot's of crying and not a lot of sleeping. We're also keeping an eye on signs of infection. He's been pulling at his ears a little, and ear infections can be common after this surgery due to the fluid that collects in them. The pulling at his ears may also be related to pain from the incision and swelling.

We're still giving him Tylenol and Motrin (which he hates) which makes him feel much better. In fact, he hates anytime we mess with him in any way, and he'll cry and fight us when we give him medicine, clean his face, change his diaper, and brush his teeth. And then there's the dreaded shampoo. This might be the worst for him. It's so hard to have to force him to do these things when he gets so upset, and it's understandable why he does not want anything else done to him right now. I'm ready to get his trust back!

On a much happier note, I think his head is looking great! When the rest of that swelling in the back goes down, I think you won't even be able to tell that he had sagittal craniosynostosis. His forehead will be prominent for a while, but will eventually round out as he grows. I was worried that he would look so different after the surgery, but he still looks like our beautiful baby boy, with a more "normal" looking head.

I've got lots more photos on my mom's camera from the surgery and the last few recovery days...we'll post them soon. Thanks for checking in!

Friday, September 18, 2009

Back at the hotel!!

It feels so wonderful to be out of the hospital! Mason is already acting more like himself. He's up and walking, eating, playing and smiling. These moments are shorter than normal, interspersed with crying and fussing, but at last we are seeing our baby boy coming back. Here he is!

A little top-heavy, he needs some extra attentive hands close by.

Playing with Papa on the bed.

Smiling boy.

"You should have seen the other guy!"

The road to recovery

We're two days post-op and Mason is finally sleeping without me holding him...time to update the blog! It has been a long few days, but Mason is doing so well. There are some photos below so you can see him at various stages. He did great during his surgery, and though he lost a lot of blood, he never ended up needing a transfusion. We had been a little concerned that another of Mason's sutures had started fusing, but they reported that the rest of his skull is doing exactly what it is supposed to. Dr. Fearon says he's very happy with the way it went. We knew what to expect in terms of swelling, various tubes, and Mason's fussiness afterward, but still nothing can truly prepare you for seeing your baby laying there like that. He cried a lot, and was very confused. I got to hold him that evening, and even though it was hard to manage with all the tubes, it felt so wonderful to finally have him in my arms again. (And he really hasn't left my arms much since). Our PICU nurses were all great, which helped.

The second day in PICU, before we got moved to the normal pediatric floor, they life-flighted a little three year old girl in and she was put in the room next door. She was there maybe an hour while they worked frantically on her, anxious parents looking in from the hall, until she died....from the flu. (They are not sure which strain yet). It was extremely hard and painful to witness. I felt such pain and sadness for her parents, and at the same time such gratitude that I was holding my little one in my arms.

Mason has continued to recover wonderfully. He has spiked a fever a couple of times, but it went away with Tylenol. The doc says it's completely normal to have a fever post-op for a few days, but if he has one 5 days out will need to get him to a doctor to be checked out. It's crazy that he had major skull surgery two days ago and he's doing fine on Tylenol and Motrin. He did have a dose and half of morphine immediately after, and some anti-anxiety medication as well that first day.

The swelling is behaving exactly as expected. It's so hard with both of his eyes closed! It would frighten and frustrate me too. We won't see his new head shape for a little while still because of the swelling, and Dr. Fearon says it can actually take years for everything to smooth out, and for new layers of bone to be laid down. Even through the swelling, it looks beautiful to me. There are funny squishy spots on his head where fluid has built up underneath the feels funny, like there is no bone there. The way it was explained to us is that the skin wants to maintain its old shape, even with the bone in a new location, and so the area retains a lot of fluid for a couple of weeks until it all goes down. There are some changes that are immediately obvious, like the new wideness to the back of his head, and the roundness when viewed from above. Most importantly, we know now that his brain has plenty of room to grow!

Many, many thanks to all of our wonderful friends and family for your amazing support through this process!

First time to see our baby boy after surgery.

Medicated and sleeping.

New head shape.

Nice round head.

1 day post-op.

Getting settled in the wagon.

Going for a wagon ride.

Playing with Grandma this morning.

Aaron curled up in the baby crib last night.

This is mostly what he wants to do, especially with his eyes swollen shut.