Wow

Sorry for the long gap between posts...life is a little crazy right now! the boys are both doing well for the most part. Max has adjusted well to home life and is getting on a good schedule that somewhat agrees with Wes' schedule. We had our first pulmonary appointment with Max last week, and we were not real excited about it because we had a bit of an altercation with the doctor in the NICU before Max went home (she had a lot to do with him not coming home before Christmas). I am happy to report, the doctor was very professional and was impressed with how Max is doing. She really thought he would be working hard and struggling with the adjustment to home still, but said that he looks and sounds like he has been home for 6-months. That was good to hear! She even said that if he is still doing as well as he is now, that at the next appointment we can talk about making some ventilator changes!! Max has not really gained a lot of weight since he came home and is still about 18 1/2 pounds. Wes is plugging along and seems to have adjusted to getting a little less attention than he is accustomed to. He is still retching regularly and has started spitting up regularly as well. This has been a very difficult issue for us as we cannot seem to get any clear direction from any of our 6,000 doctors. The latest news is that we are being referred to a neurologist. I am not exactly sure what the thought process behind that is, but what's another doctor appointment? I had a pulmonary appointment with Wes on Monday that went well. We are now down to just 3 breathing treatments a day (from 4), which means I no longer have to get up a 5:00 AM...I get to sleep until 5:20 AM now...which is very exciting!!

Still here!

Well folks, week #1 is in the bag!! Max has officially been home for 7-days and has far surpassed his little brother's first trip home that lasted only 49-hours. Max is just a doll. This whole move doesn't seem to have bothered him one bit. He just likes to look at new things. I think his nurses in the NICU spoiled him a little too much, because he does start to cry when he is not being entertained or held. And his cry is so adorable (and we just love to hear him make noise!!) that sometimes we listen to it for a little while before coming to his rescue. Overall the week has been good...a LOT of adjustments to make, and Kate has made most of them. I was not able to get as much time off of work...or hardly anytime off of work to be more specific...as I had hoped, so she, with the help of our in-home nurses and other family members have shouldered a lot of the transition.

It is an absolute riot to see both boys laying on the floor trying to figure each other out. They swat at each other sometimes, just stare sometimes, watch TV together sometimes...they are hilarious.

Wes tried to share his favorite rings with Max:

Then he realized he likes them all to himself:

Here is Max having a great time, Wes is still not sure about everything...

He's here!!

Wow. A new leg of the journey begins. Max came home from the NICU yesterday late afternoon, concluding a 9+ month stay in the hospital. So far, I think he is making the transition better than his parents. Both Max and Wes seem pretty unaffected by what has been a tremendous change in our lives. The most emotional distress Max showed through all the events of yesterday was that I think the cold air made his eyes water a little bit. He did fine in the car on the way home and didn't miss a beat when he woke up in our house. There were about 7-8 different people from CareLinc (the medical equipment provider) and our nursing agency in and out of here for a few hours, and nurse Jennifer stayed from about 8:00 PM last night to 10:00 AM this morning. This is going to be crazy, but having him home is unbelievable. We got to sing and pray with both boys tonight, and I was able to kiss both of my sons "good night" and not "good-bye." Truly something I have been waiting for for such a long, long time. Thank-you to everyone for their prayers yesterday and for the last 9-months. It has been a long, hard, trial filled journey, but it is taking a turn for the better I think. We covet your continued prayers as we adjust to caring for Max at home.

Could it be?

This is just going to be a short post...sorry for the lack of communication. I can hardly believe that I am writing this, but there is about an 80% chance that Maxwell is coming home tomorrow (Monday)!! After 9-months and 7-days, 283 total days and 15,000+ miles just commuting to the hospital and back, I cannot believe that he might actually come home. After a certain period of time I think I just thought this is how life would be for us: one of us parenting Wes while the other parented Max at the hospital. There is certainly equal levels of excitement and fear about Max coming home. Life will not be the same for us for a long, long time. We will have a nurse living in the house every night, help for Kate during the day while I am at work and a tremendous amount of responsibility with Max's trach. Please pray that tomorrow will be the day, that Max will make the transition well and that Kate and I will make the transition well. It seems like too much to handle right now and we are praying for an outpouring of the Holy Spirit to carry us through.

Here are some pictures from Christmas day...we cheated and put the boys by each other. Needless to say, it was amazing!!

Warning!!: These are the cutest kids you will ever see.