We found out we were expecting Asher on June 24, 2012. A big surprise since we had just gotten married on May 5 and I wasn’t even sure I could get pregnant. We were so happy from day 1. Around 14 weeks pregnant, I got a call that one of my tests had come back abnormal and we needed to see a specialist. My screening for cystic fibrosis showed that I had one positive chromosome. We went to see the specialists after 3 agonizing weeks of worry and were told it was basically a mistake by the lab where I had my test done, I wasn’t even a carrier! Of course that was $1000 worth of testing later, but we were so relieved. They did an anatomy scan and told us that he looked absolutely perfect, and that we were expecting a BOY! The next few months found me mostly admitted into the hospital. I had the flu, bronchitis, a mrsa infection. You name it, I had it. The perks of working in a hospital I guess. I was given countless bags of IV antibiotics, steroids for my cough, antihistamines, nothing seemed to make me better. I was so scared of what the medicines may or may not be doing to my baby.
I was due on February 24, 2013. Due to my medical history and preeclampsia, I was scheduled for induction on February 17, 2013. After 12 hours of almost nonstop contractions and very little progress, I was taken to surgery for a c-section. Asher came into the world at 8:27 pm, weighing 7lbs and 10oz. To me he was absolutely perfect. I did notice his odd head shape, but this being my first child I honestly didn’t think much of it. At his 2 week appointment with his pediatrician she asked about his head and felt around it. I just told her he must take after his dad and grandpa because they both have larger heads. From then on she asked and felt his head at every appointment. Finally, at his 3 month well visit we were sent for a skull x-ray. I still wasn’t aware of the seriousness of it, and since he had already been diagnosed with a heart defect, his head was far from my mind. We got a call that evening saying that we were being referred to a neuro surgeon. My heart dropped, I think I cried for a month non stop. I still did not fully understand and had never heard the word craniosynostosis. We met with the surgeon and I heard this word for the first time, the appointment is a blur. I pretty much only remember him saying that my child needed skull surgery, and that if we didn’t fix it he would be made fun of in school, like that was really our concern. I had such a bad feeling about this doctor. When we got home I immediately started researching. I was desperate for information. I stumbled upon many websites, including this one. I don’t think I could have gotten through those months without the other mothers I met along the way, especially Shelby!
After educating myself I decided to switch Asher to the surgery team at Cincinatti Children’s. We were so much happier there, and very confident in the surgeons. It was a long and agonizing wait due to several delays on his surgery. At 10 months old he finally had his CVR on December 26th, 2013. We spent 5 days total in the hospital, the swelling came and went. Then we were finally home! He healed up beautifully and within a week he was back to his happy little self. We are 4 months post op now and he could not be better! He had a few developmental delays pre surgery but he has caught up on every level now, even considered advanced in a few areas. He is our little trooper. Cranio kids really are amazing!