The past week has been such a blur, in a good way. Thank you to everyone who prayed, for all the encouraging e-mails and texts, and for keeping our family in your thoughts on Monday and through this week. I just can't believe that Max's surgery was only five days ago. We are constantly in awe at his recovery. It really does seem like a miracle to me. Aside from the huge ear-to-ear scar that is left on his head, there is very little evidence of what our little guy has been through. If you were to cover his head with a hat, no one would ever suspect that less than one week ago this happy, smiley baby went through a major skull surgery. Babies really do bounce back so quickly.
I wanted to document this past week (mostly for us, but for anyone else who might care to know any of the details, too). Maybe some day Max will want to know more about this event, and so I want to write it all down now before I forget the details.
The Thursday before the surgery we went in for Max's 3D CT-scan, blood work and a pre-op visit with his neurosurgeon. We were supposed to do this weeks before, but since he had RSV at the beginning of the month, and because it's always possible that an infant would have to be sedated for the scan, they postponed this appointment to make sure he was totally recovered from the virus so that he could be sedated if need be.
We showed up for the scan at 8:30. It had been nearly 12 hours since Max had eaten. He wasn't allowed to have any breastmilk after 4 a.m. and I decided not to wake him to eat before then, so he had to have been starving. He did great, though. It really couldn't have gone better. They got us right in for the scan and they strapped him into an infant immobilizer (in an attempt to avoid sedation). He was screaming and quite mad, but when they handed him over to me so that I could try to calm him down, he just closed his eyes and fell right asleep (it was actually time for his first nap of the day, so the timing was perfect). I was able to lay him down for the scan, which took about 5 minutes, and he didn't wake until we took him out of the immobilizer.
Then it was time to draw some blood to make sure that all of his blood counts came back normal before the surgery. Apparently pudgy babies make this process pretty difficult. They poked him several times (all the while he was kicking and screaming) and then finally had to go get somebody else to help find a vein.
I was able to feed him after all of this, which made for a much happier Max. After feeding him we went to our appointment with Dr. Frim, his neurosurgeon. His resident went over the surgery with us, giving us all the details on what they would be doing to his skull, and of course made us aware of all the things that could (though would not likely) go wrong with a surgery like this. We weren't surprised, but it was still tough to hear all those things, and it made me want to back out a little bit. I kept reminding myself that this needed to be done and was for his own future good. Jesse was also with us that day, and he did wonderfully all things considered. He was supposed to stay at a friend's house, but his friend got sick, and so we just decided to bring him along. There were so many viruses going around that we felt like it was too much of a risk to let him go to someone's house a few days prior to the surgery, for fear he might catch something and pass it on to Max.
Since most infants who undergo this surgery require a small blood transfusion, James and I then attempted to donate blood for him. Unfortunately, diabetics can't donate and my hemoglobin was a bit too low, so we were unable to do so. On the bright side, Dr. Frim told us that statistics actually show that non-directed donations tend to be slightly safer anyway (maybe because family members feel some amount of pressure to donate blood for a loved one and have a tendency to fudge when they answer some of the questions before donating).
The remaining days before the surgery we kept things pretty simple and continued to avoid getting out (not that we would have wanted to in this crazy cold winter). The week or so before the surgery I turned a bit psychotic when it came to germs or any kind of exposure to sickness. I doused Jesse in hand sanitizer any time we left the apartment and we basically didn't see anybody that whole week, other than at his doctors' visits. It was pretty lonely around here, but I just couldn't risk exposing him to any viruses going around, as it was very important for him to be 100% well for the surgery.
I also took some pictures of Max's head so we could have a good before and after. Here are some before pictures. You can see that it is very long and narrow when viewed from above. His forehead was actually pretty normal-looking (sometimes the forehead looks obviously misshapen in babies with sagittal craniosynostosis), so the surgeons didn't see any need to do work on the front (a great thing, since surgery around the forehead would have caused more blood loss and probably even greater swelling).
This picture was taken the week before the surgery. If you look closely you can see the ridge running down the middle of his head. That is where the plates fused together (the sagittal suture).
The following pictures were taken around Thanksgiving. You can see the long (front to back) shape of his skull and how the back goes down lower than the front (it should be the opposite).
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