I have decided to start this blog not only for a friends and family to have a place to follow up on Caelyn's life, but also to share Caelyn's story with the anyone who is interested. Throughout this journey we have had no one to look to for support, but hopefully we will be able to provide that to someone else.
To start from the beginning, my pregnancy was a normal one. Caelyn Paige was born on April 12, 2010 at 10:48am, weighing in at 6lbs 1oz and 19.5 inches long. Right after her birth, she just wasn't breathing correctly. They let me visit with her for a few minutes then took her to the nursery because they said she was being a "lazy breather". This was a very scary time for my husband and I as we were unsure as to what was going on with her. They brought her back to us an hour later and everything seemed to be going great. Caelyn's peditrician came in to talk to us and informed us that Caelyn has a high arched palate and that he would recommend seeing a geneticist because of her facial features he thought she might have some sort of genetic syndrome.
When it was time to leave the hospital we were informed that we had to come back in a few days because Caelyn still had not passed her newborn hearing screen and she also had jaundice that they wanted to recheck. When we went to follow up her jaundice was resolving itself, but she was still unable to pass a hearing screen. That said that sometimes this is caused by fluid in the ears and they wanted to see us back in 2 weeks. We went back two weeks later and she was still unable to pass, so at that time we were referred to an ENT doctor. We went to see the ENT and they could not get her to pass a hearing test either and he informed that they would wait until she was 2 years old to insert ear tubes and I didn't agree with it at all so we decided to seek a second opinion.
During this whole time, Caelyn was having a lot of difficulty in eating. She was a very noisy breather and she was gasping for air when she ate. I took her to see her peditrician and he said that I had a too fast flowing nipple (which wasn't true) and that it was normal. So once again, I went searching for someone who would believe me. We ended up seeing to ENT at WVU. Once again, she failed her hearing screen. This time they decided they wanted to sedate her for an ABR and they would do a scope of her nose at the same time. She was unable to get in for 7 months.
This is when we made our decision to move back to Ohio. I knew that there were doctors there that I knew and I trusted and that would listen to us. As soon as we moved back, we set up an appointment with our girls' peditrician. Her immediately set us up with an appointment with an ENT and geneticist at Rainbow Babies and Childrens Hospital in Cleveland. And that is when our journey truly began...