Leading up to her birth, it was hectic. My due date was 12-19-13. I arrived at Pomona Valley Hospital in CA on 12-17-13 because my water had broke. The nurse said because my water level was at 13 from a reported 18 she said yes I lost some water, but I should be OK. She said come back on your due date in a couple days. I guess because they were so packed, they sent me home. Couple days passed I did absolutely nothing. Finally got my room the morning of my due date, prepped and was ready to go for a scheduled C. My scheduled time passed. Every three hours like clock work a nurse came in and said my delivery time got pushed back. Because they had to attend to the emergency patients. A whole day later, and being forced to fast for over 24 hours. They came for me. I burst into tears. I ended up being the emergency patient, my uterus was ruptured, with my baby Audrey.
Audrey was born 12-20-13.
Nothing mattered except her well being. When she was born, I noticed her head shape right away. I asked each nurse and doctor who came in my path for the three days I spent in the hospital, if this is normal. If she is OK. If her head is OK. If she will remain looking like this. Everyone clearly said she is perfectly fine, no concerns.
We went to her 1 week, 4 week, 1 month, 2 month well baby check ups and every appointment I mentioned her head to the pediatrician and my concerns. (Not knowledgeable about Craniosynotosis) Pediatrician assured me everything was OK. Audrey started projectile vomiting and I took her to the ER. They sent us home. I took her to the pediatrician the next day. The pediatrician finally decided to refer her to Loma Linda Children’s Hospital CA to see a neurosurgeon and cranial facial team weeks away.
I couldn’t wait. I browsed the internet found different websites like this one to help me understand the process and what to expect more or less with a Cranio baby. A CVR or Endoscopic I was clueless.
I was led to Rady Children’s hospital in San Diego CA by CAPPS kids (www.Cappskids.org). I called the pediatrician to get my referral to go there. The pediatrician said no, that they have us going to Loma Linda.
I paid out of pocket to take Audrey to two consultations one Dr. Meltzer and Dr. Cohen. Sickening the fact we pay an outrageous amount of money for health insurance each month and they couldn’t do squat. I fought the pediatrician, made a outrageous amount of calls everyday to get my daughter in to Rady.
We were declined twice “due to non medical necessity” for her surgery. Loma Linda wanted her to wait a couple more months to do a CVR, I felt she couldn’t wait.
We got her a new PPO plan effective April 1st 2014 thanks to my amazing broker Terribecker.com We said the heck with the old insurance plan.
Dr Cohen’s and Dr Meltzers office both worked hard to get her in for endoscopic surgery April 8th 2014. I thank God for them.
Surgery came and went and now Audrey is healing from her surgery. She did well! Didn’t even need a transfusion. We are now preparing for her helmet therapy! It was a long road coming but we couldn’t of done it without all the kind folks along the way with their encouraging words, thoughts, prayers, wishes, support and help.
Cranio babies are amazing and so are their parents. Audrey has forced me to be a stronger person. She is an amazing baby. Happy to now be apart of such a huge Cranio family with y’all. Thanks for reading about our Angel. Words couldn’t even express how thankful we are from our care package. Thank you for it indescribably.