Cheeks

It's no secret that Carter has some serious cheeks. Don't you just want to jump through the screen and munch on them. I do. This little man continues to rock it. Last Thrusday Dr. Perez turned his Pressure support (basically a little burst of air that boosts his own breaths) down to 5 from 7. On Friday they were going to take a blood gas (small sample of blood that tells how his body is handling the help it is receiving) and if it was good they were going to move him to "Trach Collar" (basically a high flow nasal canula just going through his trach). Well his gas came back not so great. It wasn't bad just not good enough. So they put his pressure support back up to 7. Fast forward to yesterday. Travis and I changed out his trach for the first time completely by ourselves. We did a pretty dang good job if I don't say so myself. Still kinda freaks us out, but I know we will get used to it. After we were talking to Dr. Santiago and asking him what he thought our chances of getting to trach collar were and if he thought we could skip Our Children's House. He said well lets get rid of his pressure support and see how he does. So he took his pressure support down from 7 to 0. Carter didn't seem to mind at all. Usaually with changes he seems to have a honeymoon period and then it settles in to how he really takes to it after a couple hours. So I called later in the evening and asked his nurse if he was still doing ok without the support. She said he still didn't seem to notice the change. Awesome!!! So today Dr. Santiago said that tomorrow morning we will switch Carter over to trach collar. Typically when babies have a trach they will do trach collar trials. At that time they will switch them over to trach collar for and hour or two each day. In Carter's case they are going to do a permanent switch. We are praying big time that he will be able to handle it. He really is doing so awesome we couldn't be happier with his progress.

(don't worry about the out of control hair of mine. Someday I will find time to get it cut again. Jamie don't comment that you haven't cut my hair in over 5 months. Ouch)

Another GREAT thing that happened today was that Carter got to take his first bottle!!!! We thought this day was still in the far away future. The best part of it all was that Carter did awesome!! He took 12ml's. His full feed is 65ml's so it might not seem like much, but it is awesome. We weren't sure if he would even be able to swallow so the fact that he did that with no chocking, gagging, coughing, and holding his sats was a miracle! Another thing that makes it such a huge deal for Carter is how hard he had to work to get that 12ml's. Since he has the vocal paralysis it is extremely hard for him to swallow especially with the amount of swelling he has in his airway. So to help him swallow they have to add a thickener to my breast milk which makes it the consistency of honey. OT told us to imagine sucking honey out of a bottle and how hard that we would. Pretty much that is what Carter did today. It has to be thick enough so he can sorta gulp it down. I don't know if I explained that well or not, but just believe me when I say it's a huge deal! He now gets to oral feed twice a day. Whatever he doesn't finish we will just give him through his tube.

Carter's face after his first swallow. His facial expressions were hilarious!

If you can't tell we are so proud of our little guy. He is shocking his Doctor's and Nurse's with his rapid progress. We know that his progress is a blessing from Heavenly Father and an answer to so many prayers. Thank you so much for all of your prayers we can't even begin to tell you how much we appreciate them.

*Tomorrow we meet with someone to discuss the home health care Carter will need. I don't want any to be honest. I feel like it's my turn now to take complete care of my little guy, but I know that I can't do it alone so we will see how it goes. They say that they try to initially set you up with as much as we can get most likely 24/7 and then we can weed out what we don't want/need. We will do whatever it takes to keep our boy healthy and happy as well as keeping ourselves from going wacko. Ideally I think I would like someone here two days a week so that I could use those days to get out and do our grocery shopping and activities with Boston.

Trach Collar, CPR class, and home health meeting all tomorrow. Busy day wish us luck.