Jesse is 3!

Can't believe my baby boy is 3 years old. He is also 1 1/2 years post-op CVR #2 and doing great. We have some concerns about a skull defect (hole in the skull) that does not seem to be closing up at all, and his brow ridge has also flattened out a lot, but he is doing great. We are going to see Dr. Fearon on April 14th to see what, if anything, needs to be done about the skull defect.

Graduated from EI

Jesse has been in Early Intervention (EI) for delays since he was 9 months old. He was 50% delayed in all areas of speech and language. He barely spoke by the time he was 18 months, but after his 2nd surgery for craniosynostosis, his speech just took off. In fact, 2 days after surgery was when he first called me "mama" and actually knew what he was saying. Before that it was just sounds.

Today was his last day of school for EI. He is no longer delayed in any areas, so he no longer qualifies for services. When doing the speech & language evaluation, the speech therapist stops once the student misses 5 of the questions. Jesse made it all the way to the questions at the 5 year 5 1/2 month old level! He is at the 92nd percentile, which means only 8% of kids his age are more advanced.

So proud of him. He has come so far!

 

One Month Post-Op

On the other side.... AGAIN!!!

And it is a wonderful place to be... this time!

Last time all I could do was take photos of the top of Jesse's head because I knew something wasn't right. This time I'm posting photos of his new beautiful forehead!

Here is a before and after:

It was a difficult week.

Monday, August 27
We had to get up at 3:30 am to leave at 4:00 am to get to the airport in time for a 6:00 am flight. We were all very tired by the time we reached Dallas, but here is Jesse just chilling out on the plane.

Tuesday, August 28

We had pre-op appointments all day. They started at 9:00 am with getting some blood work done. It was hard. They had to stick Jesse twice and even then they had to keep digging around to keep the blood flowing. He was crying so hard. It was difficult to watch.

At 10:00 am we went to the Craniofacial Clinic and Jesse had all sorts of measurements done of his head. They also took some photos. Here he is playing while we were waiting.

Then on to see Dr. Fearon and Dr. Sacco at noon. This was a pretty quick appointment, as I had already seen Dr. Fearon in January and he explained what he would do then. He asked me to tell him what they were going to do and when I said a split bone graft, taking bone from the back to use as his new forehead, he was surprised. Yeah, I've been researching cranio for far too long!

We had some time before our last appointment, so we decided to go back to the hotel to get something to eat. However, Jesse had other plans. He fell asleep in the car and I was not about to wake him, so we went to Sonic for lunch instead.

Finally, on the the geneticist. Nothing really to report from that appointment. She doesn't feel that Jesse has any syndrome, but we will find out for sure once we get the results back from the testing.

Wednesday, Aug 29 - Surgery day

And surgery day was here before I knew it. Here is Jesse while we were waiting. We arrived at 6:00 am.

They brought him back the first time for vitals. Then we went back to the waiting room and around 7:00 am they brought him back to give him "silly juice". It helps him relax so it is easier for the babies to be taken back to the OR. It also has an amnesiac effect so they don't remember. Here is Jesse after the "silly juice" kicked in.

And then they took him around 7:30 am. Again, one of the hardest things I have ever had to do. Walking back to the waiting room I lost it. Just as I did the first time I had to hand him over.

Around 10:00 am Dr. Fearon and Dr. Sacco came by to talk to us. They told us that they had to use every bit of bone that they could get, but they were still able to get enough to reconstruct his forehead and fill in all the skull defects. He had large defects (open areas) left from the first surgery and they have been closed. Dr. Fearon over corrected slightly. He lost some blood but as of right now he does not need a transfusion.

And around 11:30 am, we got to see him for the first time after surgery. And he looked amazing!

We tried about 3 times from when he got out of surgery and through the first night to get him to drink some Pedialyte. He gulped it right up, but then got sick each time after.

Thursday, August 30 - 1 Day Post-Op

The next morning they removed the ART line and catheter. We tried some Pedialyte again and this time he kept it down! I also got to hold him for the first time.

By noon that day, about 25 hours post-op, his eyes were completely swollen shut and he would not let me put him down for anything. I held him for 7 hours straight. He slept a lot in my arms that day. We were moved out of PICU. I put him in his crib that evening to try and get some sleep myself. 

He woke up a lot, and they kept checking his vitals too, so neither of us got much sleep that night.

Friday, August 30 - 2 Days Post-Op

His eye opened. But only briefly. They would swell shut, then open again and swell shut again. He was very frustrated and very cranky when he could not see.

But when he could see, he was smiling and trying to run around the room!

We were released on Friday early afternoon and we went back to the hotel. He had another rough night.

Saturday, September 1 - 3 Days Post-Op

By morning his eyes were open for good and he was happy!

By afternoon, his eyes were really open!

Sunday, September 2 - 4 Days Post-Op

We went to Sealife Aquarium. Jesse was tired, but he really enjoyed seeing all the "ish". 

Monday, September 3 - 5 Days Post-Op and Going Home!

Here is Jesse while we waited for the plane.

And on the plane

And finally HOME!

Wednesday, September 5 - One Week Post-Op

Someone turned the light on

Waiting is hard. Even when you're waiting for something terrible like your little baby boy having surgery. All you want is to be done with it. To know when it's going to be over.

When we got a date for his first surgery it was so bittersweet. I was happy to have an end date, but knowing when it was going to happen also made it much more real. All I could think was that he really had to go through with it. That there was no turning back. At the same time, I was glad to know when it would be over.

But it wasn't over. Even in those first few moments when I saw him right after his first surgery, doubt started creeping in. I felt that something wasn't right, but I pushed it aside as paranoia. Unfortunately, I was right and would find out that he would need to go through surgery all over again.

I waited for months to find out when his next surgery would be. I had an idea, probably in September, but it wasn't concrete. I just wanted to know when this nightmare would finally end. When could I finally forget about cranio and not have a surgery looming in the distance?

Yesterday I got the news that Jesse had been scheduled  for reconstruction #2 on Aug., 29, 2012. It was a huge relief. After almost a year of non-stop cranio and feeling heartbroken over what my little boy has to endure, it was like someone had turned the light on. Finally, I can see the end of the tunnel.

Putting Cranio on the Back-burner... Sort of

The trip to Dallas answered a lot of questions. I feel more at peace now and I know what is in store for Jesse's future. As much as I hate that he has to go through another surgery, I am still so very thankful that he won't remember any of this. He will be around 19-20 months old when he has surgery #2. And I truly believe it will be his last surgery. I have to believe that.

I've had my ups and downs. There are times when I just can't stop thinking about the what if's. January has been hard because if I would have chosen differently, Jesse would just now be getting through his first surgery. And I still believe that a different surgical technique would have worked for him. That he really could have been in the "one and done" crowd.

Logically, I know I could not have known what the outcome would be. No one could. I did all my homework and researched all the surgeons in the region and made my decision based on experience. I felt the choice I made was with the surgeon with the most experience. I also chose to stay local. I knew it would be easier for everyone, including Jesse. I just couldn't imagine at the time making him fly on a plane after major surgery for 5 hours. It just didn't seem like the best thing to do.

But the mom in me can't help but think that I could have... that I should have... made a different choice. The fact that my choice is most likely the reason why he has to go through this all over again is a hard pill to swallow. I really do know that I couldn't have known... but I also know that all you momma's out there understand why these thoughts pop into my head on occasion.

Overall the trip to Dallas has been a relief. Before Dallas, I was obsessed with cranio. I thought about it 24/7. Now, I am able to push it to the back of my mind more often than not. I still visit the CranioKids support forums and still try to offer support to others, so I still think about cranio on a daily basis, but it is not affecting me in the way that it was before. I know that will change as time passes. I'm sure when July comes around and it is time to schedule surgery that I'll be right back to my obsessive self again. But for now, I'm enjoying the reprieve... and my little man.

Surgery in September

I emailed Dr. Fearon about waiting until January. I must have misunderstood what he said, because he sent a message back and said that he doesn't see any reason why it can't be done sooner. He told me any time after Aug is just fine, but he would leave it up to us. Jesse will be 18 months in August and 1 year post-op, so I'm thinking about moving the surgery up to Sept. I thought he had mentioned waiting longer, but after talking to both surgeons for an hour each, I must have been mistaken. It would be nice to get this over and done with sooner rather than later if there are no concerns about doing it earlier.

I emailed to ask about when we could schedule, and I have to wait until July to get a date in September. The surgery requires a craniofacial surgeon (Dr. Fearon) and a neurosurgeon (Dr. Sacco), and Dr. Sacco's schedule is only available 2 months prior.