And now what everyone is really wondering....an update on our super trooper, John Robert.
I'm not going to lie. These last 10 days have been some of the toughest of our lives so far. It's never easy to watch your child in pain. And it's sure not easy to watch them come out of a major surgery with their head all bandaged up and tubes and things all over them. I thought having John Robert in the NICU right after he was born was hard, but this was much worse. Let me recap so that I have it all for the "Baby Book".
We arrived at the hospital on Wednesday, May 9th for his pre-op appointment. They basically ask you 5,000 questions about allergies and if there's any history of craziness with anesthesia in the family and so on. It was fairly painless. Except when they had to take blood from JR. That pissed him off. Here he is before that little episode. Happy, happy baby!
Please notice the shape of his head in this pic. You'll want to remember that because it's completely different AFTER surgery.
We prepared everything that night for the hospital. My lifelong BFF packed me up this awesome hospital survival basket. So sweet and exactly what we needed!! Candy, magazines, games, snacks...perfection.
On Thursday morning, I had to get a few last pictures of the boys before heading off to the hospital.
The doctors explained to us that the surgery would take between 5 and 6 hours. We had to be at the hospital at 10.00am and the surgery was to begin at Noon. That's a long time for a baby to go without food, but John Robert did so good. They decided to give him the pre-med (Versed) to relax him because they had to start an IV.
They give him antibiotics an hour before surgery to make sure there's no infections.
I was surprised he could even play with this toy phone. He was already drunk at this point and probably seeing 5 of my heads. I had my brave face on for the most part, but I finally broke down when they came to take him back to the OR. That part was so hard. I know these doctors and nurses know best, but it's still difficult to put your child's life in someone else's hands.
We were taken to the surgery waiting room at that point. One of the nurses assured me that she would call every hour to give us an update. And she was true to her word! She called the first time to let me know they were beginning the procedure. She called an hour later to let me know they were just beginning the reconstruction process and she called a 3rd time to let me know that all went well and they were closing him up. The surgery itself took a little less than 2.5 hours. The whole process took 6 hours. We finally got to see him around 6pm in Pediatrics ICU...where he would spend at least 24 hours. Here's the sweet baby right after surgery.
I thought he looked great! The swelling didn't start for about 4-6 hours. He rested comfortable for a little while, but then got very, very cranky. They had him on morphine and it wasn't doing much for him. As the swelling began, he got agitated and for lack of a better word....PISSED. They gave him a sedative to relax him and it did the trick a little bit at a time. He would rest for an hour and then he was up crying again. He pulled out his oxygen at least 25 times, he twisted his bandages sideways, he tried to rip out his IV. I'm telling you....this child was sick and tired of people touching him.
You can see the swelling starting up...
Please also notice his oxygen tube is gone.
The nurses finally gave up and just set up an oxygen blow bag by his face to help him.
You can see the incision. It starts at one ear and goes all the way over to the other ear. They do a zig zag type cut so that his hair falls over the incision. If it was a straight cut, his hair would automatically part at the incision. These doctors are so smart, I tell ya.
No one got much sleep in the PICU. Trey finally went home at 4am and I was able to lay down for a couple of hours. When I woke up at 6.30am, JR was still resting but the swelling had really increased. I looked at him and just started bawling. I felt so bad for him. Why was he having to go through this?!?!?
This picture was taken about 13 hours after surgery. His eyes were completely swollen shut and he couldn't see anything. You can see his little eyelids flipping up because of the swelling. His mouth was so swollen that his 2 front teeth looked like they were in the middle of the roof of his mouth.
It had to be very uncomfortable. And scary for him.
We tried our best to make him feel at home. Singing his favorite songs, loving on him, giving him blankets that smelled like home, etc... He was still pretty hysterical for the most part. I can't blame him. Who wants to go to sleep one day and not be able to see when you wake up????
The doctors told us to prepare for his eyes to be swollen for 3 days. John Robert's, of course, lasted FIVE days. On our 5th day in the hospital, one eye peeked open and you can see that the swelling has dramatically decreased. He was still very unhappy though. I'm convinced that most of his suffering was due to his upset tummy. I think all those narcotics really messed him up.
We got to go home on the 6th day. John Robert was finally eating a little and his eyes had opened enough for him to see. This picture was taken on Tuesday, May 15th.
He's still very swollen, but check out the shape of his head!! Can you believe it?
This was taken on Sunday. As you can see, he's still swollen. We were told the swelling would last about 2 weeks. But, John Robert's right eye was much more swollen than his left eye. I started to get worried, so I called one of his doctors. We made a trip back to the hospital yesterday to have him checked out. They were a little concerned that he's still so swollen, but they said that every body processes fluid differently so they weren't overly concerned. They told us to watch it and come back in 3 weeks. So....that's the plan.
His incision is healing nicely. I'm amazed at how pretty it actually is. I was expecting Frankenstein, to be honest. I was also expecting his hair to be shaved off. They barely had to cut any at all!
He's still recovering and we're still trying to get back into a good sleeping pattern (it's like we have a newborn again!), but he's doing really well for the most part.
We're all glad this is behind us!
He'll be fitted for his new helmet in about 3 weeks. I'm not looking forward to that at all. And I know he's not, but hopefully it will go by very fast and then he'll have a beautifully round head!
We may need to insure this head of his. It's become quite expensive :)
In other news....... Hudson was chosen to be on the cover of the Fort Worth Child magazine for the month of May. Such a cutie.
My mom and Austin took Hudson to San Antonio to Sea World while we were in the hospital with John Robert. It made life soooo much easier and we were able to completely focus on JR.
Thanks Mom!!
I also have to show a few of the pictures we had made back in April. They're hilarious.
And finally....... a decent one.
And that's a wrap.
Again.....I just want to thank you all for the sweet messages, prayers, texts, visits, phone calls, etc.... We truly appreciate it. We're so lucky to have such an awesome support system!
xoxo
Sara
