I think the girls are really doing great. They still need a bit of extra cuddle time and they actually do sit still which is something we have never experienced yet with these two. We have had to give them some more of their narcotics for pain management because they are having a very hard time sleeping. Well, we don’t know if they are having sleep problems because of pain or if it is their normal 2-3 hrs of crying every night. We really can’t have them getting worked up so we give them some medicine and they calm down right away and are able to sleep for 5 hours or so. Hopefully we are doing the right thing. It is hard to manage pain on a kid who can not talk back and tell you how bad it is. That is another thing, both girls have kind of lost their voices. It is making for very silent temper tantrums which is nice on my eardrums. I was actually able to sleep the whole night in my bed because I could not hear the girls cry in their room. Don’t worry, Ted spent the night in their room so they were safe. Jenna is just starting to get her voice back. It sounds very different and I am wondering if it is going to stay that way or go back to what she used to sound like. I would think that closing off the roof of your mouth would change your voice so we will see what happens to the girls.
Anyways, we have been working Grandma Doris into our routine here. I think she is liking the extra cuddle time that the girls are allowing to happen.
We tried to get some close up of the girls but it was already late at night so they are not the greatest. I am hoping to get a picture of the inside of their mouth to show you what the doctors did inside but we will have to wait until their mouths are not quite so swollen. The doctor was able to close off most of the palate in Quinn’s mouth. She has just a very small hole on her right side that passes into the nose. That will have to get fixed when they do the bone grafting when the girls are around 7 years old. Jenna’s mouth is all closed off where it should be between the nose and mouth area.
This is Jenna. They cut the inside of each lip section and glued/stitched it together in order to start stretching their skin. In about 3-4 months we will go back in and they will rip apart everything and put together muscles and skin so they will have a functioning lip, one that they can control and use to eat, suck, drink, and talk. That is when they will be very interested in making it look good too. This part of the surgery was just prep for the next surgery.
This is Quinn. She looks a lot better too, all of the smeared blood is gone and just the stitches are left. I felt a bit bad because the last picture of Quinn was pretty bloody but we eventually got it all cleaned up and let me tell you, that was no fun task because we had to hold her really tight and gently swab until all of the dried blood was gone. We have slowly been working on it and we almost have all of the dried blood gone. There is just a bit left inside the mouth which we can not really get. We are not suppose to brush their upper teeth for at least 2 weeks so that will just have to stay.
As for appointments go, we have 3 post-0p appointments in the next 2 months and then we will start pre-op appointments again for the next surgery.