March 14, 2011

Well after four hours of sitting quietly in the audiology office we got what I consider good news. We were told in the NICU that Jaela had moderate hearing loss. It was explained to us today that at that level she could hear someone talking at conversation level about three feet away. But after the testing today they believe she may only have mild hearing loss. The audiologists weren't quite sure why it had gotten better so they want to have another test done in six weeks.

We've also found out that Jaela's OI is somewhere between type three and four. The people that did the testing aren't quite sure which one because they'd never seen her exact genetic mutation before. That just means that our baby girl is even more unique and special :) This was a random mutation which means it's not something either of us gave her. There is a 2%-5% chance that any other children we have could get OI. That's a higher percentage than I wanted but if it was genetic it would have been a 25% chance. The woman that called and gave me the results also told me there is a possibility for genetic testing that would help our likelihood of not giving this to another child. She didn't give any details but if it's the same testing that was described to us before it will involve testing embryos (I think) and picking the best candidates and then in vitro. We were told this could be a $30,000 put of pocket experiment. But that's something we don't have to worry about for a while. For now we're just going to enjoy our sweet baby girl.

Speaking of enjoying Jaela, we are having so much fun watching her grow and change every day. She's starting to show her personality and she does something every day to make me laugh, smile, or cry tears of joy. We love her so much and can't imagine life without her anymore. We're also finding that except for her fragile bones, she's just like any other baby. She is capable of so much and seems determined already to not let OI define her. I'm excited to see what this little girl will do to surprise us next.

Now for something fun....pictures :)

We had her all bundled up when we had to go outside. This was all you could see of her.


Last week Jeremy bought the sheet music for this some to play for me and Jaela.

http://www.youtube.com/watch?v=H4Ez0_qtOsc

When Jeremy started playing the piano Jaela opened her eyes and smiled and of course this made me cry. I love it when Jeremy plays the piano and so does she. After a while I wanted Jeremy to hold her in one arm and play with the other hand. But he had his own solution :)


I was holding Jaela up on my chest and she fell asleep with her mouth open and drooled all over my shirt. But that's ok. It's my mom badge and I'll wear it proud!

Can you spot what's missing?! We had to change her feeding tube so we left it out for about an hour to give her a bath so we pulled the oxygen tube off for a minute to take some pictures of her with no tape or tubes on her face. She looks like a completely different baby!

I love this face! She loves to stick her tongue out

I used Q tips to dry out some of the creases in her skin and she loves to touch and hold things so I let her hold the Q tips for me til I needed them.


I had Jaela in the pretty pink dress my grandma Turner made for her and it has a silky slip under it. Well it's so silky that Jaela falls right out of her blanket when we feed her :)