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
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