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!!

Bittersweet

We just got home from the hospital.  Wes actually had a really good day and has been able to come down on his vent settings by quite a bit, which is fantastic.  Max seems to be in a holding pattern.  He had another chest x-ray today and it showed no improvement in his lungs.  The theory is quickly changing from lung infection to chronic lung disease.  They do not diagnose a baby with chronic lung disease until they are 35 gestational weeks old, but his condition certainly supports this diagnosis.  Chronic lung disease can mean about a billion different things, and it is way too early to tell the severity of his condition.  He is very sick.  The waiting game is really starting to takes its toll.  The doctor also said that Wes looks like his PDA is opening again, and is leaning towards him needing to have the PDA Ligation surgery.  They will do another heart echo in a day or two to makes sure that is the right decision.  Kate and I really want to be happy about the progress that Wes has made (despite his open PDA), but with Max's situation it is very difficult.  We want to rejoice and praise God for the improvements, but this is so hard in the face of setback and unknowns.  With everything else that is going on in our lives right now, we just really want the boys to start taking strides in the right direction to give us some joy and balance out all of the heart break and anger.  Right now it does not feel like that is God's plan.  We just want to scream to God, "who do you think we are?  What makes You think we can handle all of this!!"  Send us relief Lord...our faith just does not seem strong enough to hold us together.