Janessa's Update

Janessa Faith at 2 weeks old!

So...on Friday, April 6th, we took Janessa to see the specialist about her cleft palate. Oye! We learned a LOT! One thing that I really learned was that they never should have sent us home from the hospital with so little information!

They gave us special bottles to use to feed her that allow us to squeeze the milk into her mouth. Since she has a hole in her palate, her trying to suck is like your or I trying to drink out of a straw that has a whole bunch of holes in it...somewhat impossible and frustrating! In the hospital we were told that I could not nurse her because it could cause that hole in her mouth to be covered and she would not be able to breathe...WRONG! I am actually allowed to nurse her for non-nutritive purposes (basically, as a pacifier). The only reason she cannot nurse is because she will not be able to actually suck enough to eat anything. So...for those of you who know my prior breastfeeding issues, you will find it as ironic as I do that I finally got a baby that WILL latch, has the desire to nurse, I am producing enough for her...and I am not able to feed her that way...figures! Well....at least I see the humor in it.

They told us that the reason that she was not gaining weight as she should be was because she was working so hard to eat that she was getting tired before she was actually full. That made me a little sad that I wasn't giving my baby enough food, but at least we got that figured out! She does FANTASTIC with the new bottle!

Janessa will need surgery to fix the hole when she is 10 months old and possibly a secondary speech surgery to rearrange muscles in her throat for speech purposes. We will hope that isn't necessary...but again, this issue is 100% correctable and I am thankful for that.

She will need speech therapy and braces (although...it seems like these are norms for so many now...it doesn't scare me!)

The biggest thing that I have been overwhelmed with was learning that our baby has a hard time breathing if she is flat on her back. I am not sure if she is going to grow out of this or not at this point. At the hospital, they told us that she should not sleep on her back because her tongue could fall back and cover the hole and that would suffocate her  (way to scare us to death!). The reality is, she cannot lay on her back because her tongue is normal size and her chin is not...it covers the hole a little bit and she has to work hard to breathe. Now...this isn't as scary to me, but it does make you realize that many of the "normal" newborn activities (playing on a  play mat, or laying on a blanket and just stretching out) are not things that we can do with her unless she is at an angle.

Overall, the specialist was SUPER helpful, gave us a binder full of information and websites and has even called me a few times since our appointment just to check on Janessa's weight gain and see how we are feeling about her feeding and such.

Now, 1 1/2 weeks later, Janessa is gaining the weight she should, she is eating and sleeping great. Her sisters are in LOVE with her (as are her mommy and daddy). She has perfect cheeks, is alert and curious. She loves to be held and snuggle...and she is going to make sure that even though she is number 3, she gets all of the attention that she wants!

For more information on what is going on with Janessa you can check out:

http://www.cleftline.org/  or
http://www.craniofacial.net/conditions-pierre-robin (they think that Janessa may have this...but it hasn't been completely determined yet)