One week until Christmas!

Hi everyone,

Tina is down in Boston with Ethan right now. Kevin and I both have colds so we aren't allowed to go see him right now. Kevin is actually sleeping right now, which is very rare while he's been sick. I thought it would be a good opportunity to give a family update.

We tried to get a family Christmas photo down at the hospital early this week. It didn't quite go according to plan. We couldn't get one shot where either Ethan or Kevin were either crying, covering their face, or looking away. I guess that's just what we have to learn to deal with going forward! The photo above is one of the few ones where they both are at least not crying.

Ethan went down for another dilation this past Friday. They are confirming now that he won't be home for Christmas. In all likelihood he won't be coming home until sometime in March. That is tough news for Tina and I to digest. Assuming that holds, that will mean he's been in the NICU at the hospital for 7 months!!! It's difficult to picture that, and looking back we really had no idea of how long of a process this would be. There is some good news buried amongst this though. They are planning on performing an "Aorotopexy" at the same time as his heart surgery in mid-January. It's a procedure where the aortic arch is attached to the sternum, which will cause his trachea to be pulled open. In theory, this would treat his severe tracheomalacia and potentially allow him to come home in March without the trach tube.

As difficult as it is to imagine not having him home next weekend for Christmas, and then not until March, it's encouraging to think that as Spring is starting he might be coming home with no tubes or alarms attached. If we've learned anything over the past four and a half months, it's that we unfortunately do not control the outcome of life's journey. We will continue to pray that God will look out for Ethan and provide his healing touch to him.

During his dilation this past Friday, they still noticed he had what they are referring to as "shelves" inside his esophagus. These are essentially scar tissue, but they could obstruct food from passing smoothly down once he's on oral feeds. (Side note: he is now being feed into his stomach, they pulled the "J" tube out of his intestines!) They surgeons are discussing their options at this point. Hopefully they will be able to go in endoscopically and clean these up. If not, they might have to re-open the incision from his TF-EA surgery. For his sake, please pray they can do this endoscopically.

On the home front, other then dealing with the effects of his cold, Kevin is doing great. He's getting bigger and stronger by the day, and has developed very charming personality. (I know I'm biased) He misses not getting to go down and see his big brother, but he's been as good as possible to help out mommy and daddy. Aunt Kristen flew back to Ohio yesterday, so Tina and I are alone with the boy in NH for the first time. We don't get nearly as much done in a day as we would like!

We haven't had any snow accumulations, which is crazy when I see that Ohio has been getting relatively pounded over the past week. I'm holding out hope still for a white Christmas. Mom, Kristen, and Kelsey are driving out next Wednesday to spend a week with us over Christmas. We cannot wait to see them, and try to enjoy the day as much as possible without our Ethan at home with us. We will definitely be driving down to Boston to spend some of the day with him.

Thanks to everyone who's sent us Christmas cards. We deeply apologize in advance that we've yet to start ours. We are going to try our best to get them out, but our plans are constantly evolving.

Peace and love to everyone during this joyous time of year. May God bless you all, and have a Merry Christmas!

Love,

Ryan, Tina, Ethan, and Kevin