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 skin...it 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.

Wednesday, September 16, 2009

See with your own eyes..

Nothing like a video to let you know.. he is sleeping, but you can get the sense that he is ok.

Mason J Video

Out of Surgery

Allison is back with Mason J, I don't think that anything could pull her away from our son right now, so I wanted to shoot out an update. Mason J is doing absolutely fine. The doctors told us that he went through the surgery well, and that they had to push more fluids than normal because his bp was fluxing, but he did fine and is in recovery now in the PICU. We hugged all the doctors and I had tears in my eyes, seeing our boy after his tough journey. His little body is so strong that I imagine it could take just about anything. Thankfully, because of Dr. Fearon, Dr. Sacco, and their group, he won't have to work too hard. We asked the PICU doc what we should be worried about and he said 'honestly, we don't have any problems with Dr. Fearon's patients, they all seem to do fine because he is so careful."

First Update

Mason has been in the OR an hour and we just got our first update. They actually just started the procedure, the first hour they got him to sleep and put in his IV lines and an arterial line that keeps track of his blood pressure with each heart beat. They said that all his lines went in very smoothly, and everything is right on track. He's wrapped up in my moby wrap...a little bit of comfort.

Surgery is under way

Mason entered the OR at 1:03, and we get our first update at 2. Handing him over was the hardest thing I've ever done. He was on "goofy juice", so he was really loopy. He fell asleep on me in the moby wrap right before he went back, but I had to take him out to weigh him, and he woke up. The nurse took him and he started to fuss a little. We watched them walk through the door to the OR, and then we headed back out to the waiting room. They say he won't remember anything because of the medicine, but I keep seeing his little face, scared and confused, and it breaks my heart. Updating the blog really helps right now.

He did have a very fun time this morning after check in because he just got to play in the huge room of toys. He didn't seem to think about milk, until around 12 when he started asking for it. That's when I just put him in the wrap and let him have my finger.

Here are some photos from this morning.

Playing in the playroom before surgery.

Playing with Grandma.

Walking to the holding room.

Peaceful sleeping baby.

Family photo right before he went in to surgery.

Surgery time

Mason's surgery did not get moved up, so we are on as scheduled. We go to the hospital at 10:30 and get him ready, and then they plan to start at 12:30. This means he should be out of surgery and in the PICU around 4:30 or 5.

Tuesday, September 15, 2009

Pre-op Day

Our long pre-op day is over and we are having fun in the hotel after a great dinner. I'm trying not to think about tomorrow, though if it is anything like today, we will breeze right through.

We started out the morning just trying to find the right building, though it ended up being pretty easy. I checked us in while Mason and Papa played with lots of fun toys. Then it was off for pre-up testing. It went so well! They did all the usual stuff, weight, height, blood pressure, etc. The nurse did something I did not expect, which was to put some numbing cream on Mason's arms before the blood draw. We left it in place covered with a bandage while we did a few other things. Next it was to the anthropologist for measurements. (Anthropology was one of my majors in college, and I never heard of such a job as an anthropologist before!) Apparently, this is the part where many babies often scream and fuss, but Mason just sat there very calmly on his papa's lap. He was certainly interested in what was happening, but not scared.

Then came Max. Max is the photographer for the media department. They get lots of pre and post-op photos of all the kiddos. All I can say about the "photo shoot" is that it was hilarious, and quite possibly the closest thing to a David Bowie music video shoot I will ever experience. Ask Aaron to describe it sometime plus see photo below...

After the photos it was question and answer time about the surgery with a nurse, and then time for the dreaded blood draw. I could not believe it, but Mason did not even cry! That numbing stuff really works! Why doesn't our hospital in Alamosa use it? It was over in no time.

Then we had some lunch before our appointment with Dr. Sacco, the pediatric neurosurgeon. He was very nice, and Mason loved playing with some big trucks in his office. He drew some pictures of the surgical procedure for us, and explained what would happen tomorrow. He also said that there is even more evidence emerging that when treated and untreated cases of sagittal cranio are compared, the kids who have had surgery tend to do better cognitively.

The we had a break to come back to the hotel before our last appointment with Dr. Fearon. He called us back to his office himself, and we really like him. He's such a genuinely kind man....I definitely feel like I can trust him. We talked to him for a while about Mason and the surgery. The last thing he said to us as we left his office was "I guess the only guarantee I can make is that I will treat Mason as if he were my own son", and his eyes told me that he meant it.

The anesthesiologist called us tonight as well, to tell us when to stop feeding solids, breastmilk and clear liquids. The surgery scheduled for tomorrow morning before us might be canceled, and if that happens we will be called in for an earlier time. This means that I have to stop nursing Mason at 5:30, and we will get a call at 7:30 either telling us to come in for surgery, or to go ahead and nurse Mason again. If he ends up going in earlier we will definitely post an update so everyone knows.

So here we are. I'm a wreck thinking that this is happening tomorrow. I'm nervous about him asking for milk and not being able to give it to him, of the moment when he his taken from the holding room to the surgery, and of the moment that we will see him, swollen with a different head shape. Part of me so wants to just take him and go home, but I know that tomorrow morning we will go and he will have the surgery. Please keep sending us lots of love...we need it right now!

Playing on a fun snake at the hospital.

Sleeping on mama....so nice.

Helping unpack at the hotel.

The unique photo shoot...

Head measurements.

Checking out the blood pressure cuff.

Playing with some cool toys in the waiting room.