Overdue Update

This is a really good shot of the NAM device. You can see the nose piece and how wide open it makes his mouth. They will begin taping the lips together tomorrow (because of how wide they are).
Here is another shot of the NAM.
Just the best big brother in the world. Everett actually really loves it when Dominick holds him. There have even been a couple times when Dominick has been the only one who could calm him down. Big brothers are the best!
Here is a before picture of his mouth and nose. Crazy how much he has changed by putting the NAM in his mouth. It was really hard for Aaron and I to the first day to look at him without feeling like it wasn't really Everett. We loved his face the way is was so much that it was just really different.


Okay, okay I am so so sorry for not blogging sooner. But, it is not like I have not been busy! My Mom is desperate to see the new NAM device and progress of Everett so I will share a little bit.

Last Wednesday Everett got the NAM device put into his mouth. It is really a blessing he has one, because the Orthodontist we saw is not on his surgical team, but was referred by his surgeon. He is also the only doctor in all of Illinois that makes these devices. Anyway, it is just a retainer that completes his palate (only the hard palate - not the soft) and has a nose piece hooked into the retainer to shape his nostral. We didn't realize that if he were to have his lips fixed without the device he would have a collapsed nostral and lots of trouble breathing, and several more plastic surgeries to fix the nose. So, this is a wonderful preventative device to get the nose (while the cartilage is still maliable) in place before the lips are fixed. Wow, sounds complicated. He will go in once a week to have the device adjusted for how he is growing and also start taping his lips. Already we can see a difference in his nose. Ideally I will post weekly updates of his progress for you all to see, but please forgive me if I just can't possibly find time (or energy).

The hardest part was that he had to learn how to use his tongue. This took a lot of blood sweat and tears (literally). For six weeks he basically did not use that muscle and overnight had to learn how to use it to eat. It took two days and he finally got it. It is amazing to see how well he can suck with a palate in his mouth. The down side - even though he can suck so fast I have to make him stop more often to burp him because, if you can believe it the NAM makes even more air go into his belly when he eats. This poor little boy. Honestly, the only way I can describe it is by thinking of the time when your stomach hurt the worst because it was so bloated by gas - that is Everett 90% of the time. He really is going to love having those lips closed (me too)! Not to mention the fact that he has to be upright for at least an hour after feeding (which still takes around an hour each time) or he will wake up promptly and spit up all the milk he just worked so hard to eat. So, my day is pretty much holding him while he is crying trying to toot or burp, feeding him, rocking him after the hour is up to get him to sleep and then starting all over again. This all while pumping every three hours, getting Dominick to school and home, getting Kambree food (getting her dressed is optional) and eating myself. - I'm getting tired just writing about it. (Does anyone know a nanny that does pro bono work??)

Anyway, he is eating much better and is now at 7 1/2 lbs.! He just rolled over today for the first time, but still won't smile at us. I kinda think it has something to do with the fact that he is never happy (the gassy belly and all). I really hope he is happy and that he smiles soon.

I am so so so grateful for all of you who care about us and Everett. I have not been on the blog for so long and today was so overwhelmed by how much love and support was there from so many of our family and friends - and even family of our friends. We love you so much and are so grateful for you all. We really can feel all of your prayers and hope you are all being blessed for your kindness to us.