Victoria was born on September 20th, 2013, the day of the 4th attempt to induce labor. When she finally joined us, she had a short, unexpected stay in the NICU. Her blood oxygen level was a bit low and she didn’t pee for over 24 hours after birth so they found she was dehydrated as well. After putting her on oxygen and pushing fluids through an IV, she came home 6 days after she was born. Everything was great after that, until the day Mike and I found out she needed to have complete skull reconstruction surgery.
Ever since she was born, her pediatrician kept telling us we need to watch her soft spot on her head because it seemed a bit smaller than normal. He said as long as it stays open, it’s fine. As the weeks went by, I could start to tell that her head was long and narrow, rather than round like normal. Her forehead started to bulge out and the back of her head seemed to stick out more than normal. When she went for her 3-4 month check up on January 7th, 2014 the pediatrician noticed that the soft spot on the top of her head (sagittal suture) had now completely closed. He explained to me that this will require surgery and gave me the name and phone number for Dr. Mark Dias (Pediatric Neurosurgeon at Penn State Hershey Medical Center). That night, of course, I did what every other parent would do. I got on the internet and read everything possible about this which I think scared me more than anything. The very next day I called and made an appointment with the Neurosurgeon and on January 29th, 2014 we went for our consultation. At the visit, Dr. Dias confirmed that Tori did in fact have Sagittal Craniosynostosis. He said there was no need for x-rays or a CT Scan. He explained everything that he would be doing and drew a picture of all of the cuts he would be making on her skull. He has done over 200 skull reconstruction surgery’s and over 100 of them were the exact same procedure he would be performing on Tori, which made me feel a lot better. He said that normally he does this surgery when they’re between 2 and 3 months old. He said the longer we wait, the harder the surgery is. As they get older, their skull becomes harder and harder and he said the surgery is a lot easier to do while their skull is still soft. He told us everything that they would be doing. They would give her medication through a gas mask to make her fall asleep and after she fell asleep, they would give her anesthesia through an IV. They would make a wavy incision from ear to ear, pull the scalp back and make several cuts in her forehead, sides and back of her skull and they would also remove 3 inches of her skull from the top of her head the whole way to the back of her head (leaving her with a giant soft spot). He explained to us that the large soft spot would take an average of 6 months to close. He also said that about a third of the patients have to have a blood transfusion. He then told us that they would be scheduling surgery within the next couple weeks.
February 11th, 2014 (at almost 5 months old) was the big day. Tori’s surgery was scheduled for 7:30 AM and we had to be in Hershey (which is a 45 minute drive for us) at 5:30AM. They allowed me to feed her 4 hours before surgery so I got up at 3:30AM to feed her. Of course I couldn’t sleep after that and I barely slept before that either just thinking what the next day would be like. We got there at 5:30 AM and went through all of the registration and pre-op stuff. We got to walk down the hall with her until they took her away. They said surgery would take about 2-3 hours. After what seemed to be a century-long wait in the waiting room, Dr. Dias came down at about 11:00AM and said that surgery went GREAT. He said that they did need to do a blood transfusion. She lost 10cc’s of blood (which is next to nothing for an adult but is substantial for babies). They used stitches to close up the inside layer of the scalp then just used steri strips to close the outside. He then said that they were wheeling her into the recovery room and as soon as they have her situated, Mike and I can go up and sit with her. We went up and she was wide awake already (within 15 minutes of closing her up) and she was hungry as ever. She had already drank two 2-oz bottles of Pedialyte and the nurse told her that I can go ahead and feed her. We were in recovery for about 3 hours than she went to the PICU (Pediatric Intensive Care Unit). They closely monitored her every hour, which she didn’t like at all. She was in a great deal of pain but she’s a tough one. As the time went by, the swelling and bruising got worse. The next morning, her head was very swollen and her eyes were black and blue and completely swollen shut (all which is normal). Everything went so well and she was doing so good that we actually came home the next night!
She was in a great deal of pain. She was on Tylenol every 4 hours and Motrin every 6 hours. I was shocked how fast the swelling and bruising went down. The bruising was almost gone after 3 days and the swelling took about a week to go down. To this day, it absolutely amazes me how fast babies recover. I was able to wean her off of all pain medication within 2 weeks post-op. The surgery threw off her sleeping schedule for a couple weeks. Luckily, I was able to take a short leave from work and got to stay home with her for 2 weeks. She has a 2 year old destructive brother so I was glad I was able to stay home and make sure he doesn’t hurt her. I removed the steri strips from the incision after about 2 weeks and couldn’t believe how great the incision looked already.
We had a follow up appointment with the Neurosurgeon on March 6th, 3 weeks post op. I first thanked him for everything him and his team had done. The surgery went so well and the staff at Penn State Hershey Medical Center is wonderful. I told him that if I had to do this all over again, I wouldn’t change a thing. He took one look at Tori’s head and said that she had the best outcome possible. Her head was perfectly round like it’s supposed to be. He said the skull should close within 6 months. We have to go back yearly until she’s 6 or 7 then that’s it.
The care package that was sent to us was wonderful! Since all of this happened so fast and I didn’t sign up for the package until the week before surgery, so I only received it the day after surgery which is the day we came home but it was FULL of so many things for Tori. I want to personally thank Summer and Shelby for having such a great organization for families with Craniosynostosis babies.
We are now almost 5 months post-op and you can’t even see the incision anymore. Her hair has grown right over the incision and her head is perfectly round :)