Nicholas was scheduled to be delivered via a C-section on Columbus Day, 2016. I’ve always heard that once you schedule a cesarean you will go into labor before the scheduled date and Nicholas didn’t disappoint. Friday the 7th we spent the day getting the house stocked with everything we would need for our first week home with a new baby. I snuggled with my 8 year old daughter a little longer, read her an extra story and got her to bed and then decided to stay up late to watch some TV. My husband was helping a friend work on his truck so I stretched out on the couch. Of course I fell asleep instantly and woke up at 10 to drag my butt upstairs to get a good night’s sleep. I was beat! I climbed into bed and at 40 weeks to the day it took some effort getting comfortable. Once I was set surrounded by pillows I took a deep breath to settle in and boom…my water broke. We welcomed Nicholas Edward into the world at 1:16 am Saturday October 8th. 9 pounds 15 ounces, 21 inches long. A perfect baby boy.
When the pediatrician came into our room to examine him the first day she made a comment that his bumpy head would round out and not to worry. I examined his head myself as soon as she left the room and didn’t notice anything out of the ordinary. As the next 3 weeks went by I noticed a ridge forming on the top of his head but because the doctor said it would smooth out I wasn’t too worried. I pointed it out to my husband and we decided to keep an eye on it. Finally at week 4 the ridge wasn’t going away, in fact it seemed bigger and longer. I googled “ridge on baby’s head” but I was not prepared for what I found. All of these baby’s heads looked like Nicholas’s. I called the pediatrician and got Nicholas an appointment as soon as possible. He was 5 weeks old when we went to see her and as soon and she touched his head she said “Sagittal Craniosynostosis”. I said excuse me Sag-it what? She wanted him to have a 3D CT scan done at Children’s National Hospital but did not want it done until he was closer to 8 weeks old because of the radiation levels. A friend of mine suggested that I go ahead and make an appointment for a 2nd opinion at Johns Hopkins in Baltimore ASAP because there can be a long wait to get in. I made a few phone calls and got the CT scheduled at Children’s and the 2nd opinion at Hopkins, both of their first available appointments.
Dec 30th, the day of the 3-D CT Scan, Nicholas did great! The nurse turned on a Wheels on The Bus video on YouTube for him and they were able to do the scan without any sedation, within 2 minutes we were walking out of the room in shock. We had built ourselves up with so much fear and anxiety and it was easy! We got copies of the scan for our records and the hospital emailed a copy to our pediatrician. That afternoon as we were backing into our driveway the pediatrician called. I held my breath and answered. She said it was confirmed, Sagittal, I chuckled and told her it’s too late for that! I also told her that I had prematurely scheduled Nicholas an appointment with Dr. Eric Jackson a neurosurgeon at John’s Hopkins the very next week. She was impressed! I was on the ball. The moment we got off the phone I start crying, my husband came into the room and I couldn’t get any words out…surgery was definite.
Tuesday January 3rd we go to Hopkins to meet with the neurosurgeon to come up with a treatment plan. He needed surgery ASAP because he was on the tail end of being able to have the less invasive endoscopic surgery. Dr. Jackson was confident that he could still do the surgery as long as we don’t wait to schedule it. He explained to us that Nicholas did not have the typical elongated head shape most Sagittal cases have. Instead of Nicholas’ head growing front to back his head was growing out around his ears, still side to side. And because of this he was a perfect candidate for helmet therapy. Dr. Jackson told us his office would call us in the next 2 weeks with a surgery date and time. Thursday Jan 5th I was at work and the surgeon called…Dr. Jackson wanted to do surgery the NEXT DAY. Not a week away not a few weeks away, the next day. I was not mentally prepared for him to have surgery but Dr. Jackson wanted the surgery done ASAP so that the less invasive one would have the best results. I packed up my desk and headed to pick my boy up. I took him to get a pre-op physical and my husband and I called and got an appointment at our church to get him baptized that night.
2:30 the next morning we headed to the hospital. The wait was excruciating. When the time came I carried Nicholas into the operating room and the wait began. The surgery took 5 hours total, 2 hours of that was them trying to get an IV into Nicholas. Because he was a chunky baby they tried each arm and each foot 4 to 5 times each until they got a good line into each of his ankles. At 12:30 we were brought into the recovery wing and we could hear Nicholas screaming before we even got to his room. The nurse quickly gave him enough pain medicine to knock out a horse and he fell asleep. For the next 4 hours we sat there at his bedside. Nicholas had lost more blood than they liked and he was on transfusion watch. Once Nicholas’ pain was managed and we were “out of the woods” he was moved to a normal room and our families got to come in and see him. It had been a long day for everyone. The next 3 days and 2 nights were a blur of vomit, medicine, nurses coming and going, and staring at his heart rate monitor but we were finally able to come home.
We are now 11 months post op and Nicholas is doing amazing! We did 9 months of helmet therapy 23 hour a day, his blood levels returned to normal 2 months post-op. He is an inspiration. No bad day at work can compare to what he has been through.