Ups and Downs

So it has been a few days since I have had a chance to post on the blog. Lets see if I can bring everyone up to date. On Tuesday he was doing so awesome. They decided to put him on the low flow canula at 1/16 liter and 100%. This was upsetting and confusing to me at first because we have been trying so hard to get his oxygen at 21% (which is room air) because it affects his eyes otherwise. After talking with a few nurses and the doctor about it I understand it more. It's a good thing. It's what he would go home on. I guess the machine that he goes home on you can't adjust the amount for the oxygen just the liter amount. On Tuesday night the nurse tried feeding Ethan a bottle and he did great. He took the whole thing in 20 minutes! He even got moved down to 1/32 liter which is the lowest it goes! Wednesday morning we called to check in on him and he was still doing great. So we headed to Glacier for the day. It was awesome. The weather was perfect and one of our favorite nurses was taking care of Ethan so we were able to enjoy ourselves. We went to lunch at Lake McDonald (we don't recommend it) and then went for a hike to see Avalanche Lake. It was awesome but we found out there was a bear seen on the trail. It was a 2 mile hike in and 2 miles back. We heard this news when we were in about 1 3/4 miles so we weren't turning back! I hiked 3 times as fast on the way back though!

So Thursday we went to the hospital to see our little man. They decided that he needed to go back onto the high flow canula because he was just working to hard at eating that he needed more help breathing. This was of course upsetting to me. I hate the high flow because you have to be careful when you move him or he gets water shot up his nose... just a defect in the machines I guess. So Thursday night they we tried breastfeeding and he did great. Then while I was gone that night they decided to try his food over an hour. They said he did great with that.

Well then comes Friday. I got there and he just looked wore out. He didn't look good at all. I continued to say "he really looks like he is having a hard time breathing." The nurse agreed with me and talked with the dr. and nurse practitioner. They said oh we will just see how he is throughout the day. His oxygen was ridiculously high for him. He was at 3 liters and 5o%! He has never been that high on the high flow. Then he didn't want to even try breastfeeding, didn't want anything to do with his binky and his eyes were lifeless. He did not look good. I finally asked to talk to the dr. He was gone so the nurse practitioner came. I asked if we could do some tests to see what was wrong. She said we don't like to do that until he shows that he needs more support. I said well he obviously has something wrong, why would we wait. She said because there is cost and there is pain involved. Well cost is covered by insurance and the pain... well he is in pain now trying to breath. So she ordered the tests basically to make me happy. I was really surprised by this because she usually hears me out and looks more into why I would be saying this. She then took 2 steps farther and saw Ethan. Then she got concerned. A few minutes later Ethan was being intubated... back on the ventilator! Ugh! So frustrating. So they have been doing tests to see what is going on with him. His eyes look much better on Saturday and his breathing looks so much better. They have been doing tests and it doesn't look to be an infection. They talked about needing the stomach surgery but they need to be certain it is acid reflux before committing him to a major surgery like that. They are thinking it might just be that he needs to grow out of the acid reflux which will just take time. How much time... we don't know. He has been getting slowly worse over the last few days as his feedings starting to become more frequent with the bottle, breast, and more condensed feedings.

I really am frustrated right now. On Wednesday when we were in Glacier we were so excited because we thought he might be coming home in the next 2 weeks. Thursday the Dr. told us it would be about 3 weeks. Now, well now we have no idea. They still don't know what is wrong with him for sure. Ethan is a rockstar and we know he will get over this... we just pray that it is soon so we can take our baby home!

Good news is Ethan is still growing, eating, poopin and peeing! He is now 6 pounds 10 oz and over 18 inches long (this was as of Thursday night so he is much bigger now I am sure)! He also is over 3 months old, 94 days (but who's counting!)

This is the lake we hiked a total of 4 miles to see... completely worth it.

It is very hard to get a good picture of us when you hand a fancy camera to a tourist that knows nothing about it... but they tried ;)