Gracis was born on January 20, 2012 . She was born at 37 weeks and 5 days, but other than that we had a normal pregnancy and delivery. We were so excited to welcome this perfect little angel into our lives. We noticed right away that she had a slight rasp when breathing but the doctors kept telling us there was nothing wrong and it would go away. She also had a ridge down the center of her head, which they also said was normal and would go away as she grew.
At 5 weeks old the pediatrician finally agreed that the rasp wasn’t normal and Graci was diagnosed with a mild case Laryngomalacia, aka noisy breathing, and we were told that she would out grow this between 9 and 12 months. This is also where our Cranio Journey begins because at her follow up appointment with her airways specialist on May 1st at 3 months old, the doctor asked if our pediatrician had mentioned her head shape. I advised him that I had noticed it, but the pediatrician kept telling me it was normal. He advised me of that on my way out of his office that we should stop next door at plastics and make an appointment for her to be seen, just to be safe and make sure it wasn’t anything to worry about.
This is where our world was turned upside down in a matter of minutes. The nurse at the desk felt Graci’s head and advised that she thought we should schedule a CT scan and an appointment but wanted a Doctor’s opinion. The Dr. felt Graci’s head and said we didn’t catch it to soon or too late and that he agreed we needed to bring her in for a appointment and CT scan.
This is where the word Craniosynostosis became part of our normal vocabulary. On June 5th at 4 months old, the CT scan confirmed that Graci did in fact have sagittal synostosis and surgery was going to take place in late October early November. Surgery was scheduled for October 31st when she was 9 months old.
This would be what seemed like the longest wait of our lives. We made the best of the months to follow by reaching out to the different support groups and learning as much as we could about craniosynostosis, all while focusing on not missing any of Graci’s firsts. We agreed after her diagnosis we weren’t going to let this hold us back from enjoying the time spent with her. On October 31 the Dr’s took Graci back for surgery at 7:30 am and by noon she was done. The hardest parts of this were handing her over, and when they brought us her hair (this was her first hair cut.) We spent the next 48 hours in PICU then moved to our own room and finally went home on November 5th.
Graci amazed us; she was only on pain meds for the first 48 hours and didn’t even need Tylenol after this. By 72 hours she was almost completely back to being herself even with the swelling.
At her 2 week follow up her plastics Dr advised he normally sees his patients back at 6 months but said she was doing so well he doesn’t want to see her again for a year unless there is a problem. We are now 4 weeks post op and if not for the scar across her head you would never even know she had surgery. Thank you to all of the friends we have met which have been through this or are going through this that have supported us through this Journey. Your Cranio Angel will amaze you!