Ethan's latest

Hi guys,

It's been a couple of weeks since my last update, but our situation hasn't changed a whole lot since then. Ethan was scheduled for his trachea surgery on Wednesday of this week, however we just learned tonight he's been bumped to at least Friday. It's extremely difficult to hear he's been bumped from the surgery schedule. Not only do we need to coordinate my work schedule, but it also just delays his potential discharge date. We feel very much like we are stuck on Groundhog Day, and nothing seems to get accomplished. I'll keep you posted on whether or not Friday gets confirmed.

Overall, Ethan seems to be doing well. He's up to 10 lb. 8 oz., and has finally gained real weight consistently over the past week. They have gradually increased his caloric intake to what the nurses aptly call "Rocket Fuel" to see if it will help him gain weight. The team is careful to try and balance this caloric gain, against his fluid retention. They discontinued his long-term diuretic today, which hopefully means his body is managing it's fluids better.

Ethan's disposition amazes me on a daily basis, and gives me hope that the 7+ months he's been in the NICU won't cause any long term development issues. He's become much more interactive with his hands and eyes. He still loves all the attention the nurses and helpers give him at the hospital. We've had some luck lately on getting him to take more oral feeds. Some days he prefers the bottle, and others cereal. There is really no rhyme or reason at this point, but we will take either one and continue to hope that this will help him get his G-tube out quicker once he can sustain himself on oral feeds.

Kevin had his circumcision finally last week. He's done well with it, after his overnight stay at the Elliot Hospital in Manchester. He's now taking cereal and different foods a couple of times each day. He's much like his father, and really hasn't found a food he doesn't like so far. Kevin's favorite hobby right now is his jumper swing. He's got very strong legs and loves to bounce up and down for hours at a time. It's nice to be able to let him play and try to get some stuff done around the house. He gets bored very quickly visiting Ethan, and typically needs to be escorted out of the NICU to calm him down. Most of the time, he's all smiles and is a fantastic stress relief for his mother and I.

The trips down to the hospital are very taxing on all of us. Kevin does not enjoy being in his car seat, unless there's classical music on the radio (it's a little weird). The traffic into Boston is ridiculous, and the 10 minute drive across town regularly takes us close to an hour. In New Hampshire the term "Masshole" is typically used to describe the driving habits of our neighbors to the south. Common practices are to avoid using turn signals at all costs, and the left lane is only used to leisurely drive below the speed limit.

Our garage addition is finally completed. Floyd (the contractor) finished working last Wednesday, and we've completed the interior detail work. It's been a great addition, as we got about 2 feet of snow between Friday and Sunday storms last weekend.

Lastly, Kelsey is coming to stay with us this weekend for part of her Spring break, and we are very excited to see her. Next week Jimmy and Lindsey are flying out to visit as well. I'm very excited to have them in the Granite State. The plan is now to take a much needed vacation day, and head up north to the mountains for some skiing.

Gotta run, it's 9:14pm and getting close to my bedtime! Life is pretty draining these days. Much love to everyone, and feel free to give a shout sometime.

Love,

Ryan, Tina, Ethan, and Kevin

ps. The photo documents Kevin's typical greeting to Ethan; trying to eat his head!