Thursday Owen started the steroid that he can safely be on for a longer period of time. He also had his eyes tested again, and they are more improved!! This morning they shared that he was having a more difficult day. The steroids seem to be making him more irritable and restless. He turned his head today and managed to get his tube out again. They were able to put back in the larger size tube, which helps him breathe better, and also means the steroid is working. His airways aren't as swollen. They weren't able to put that size in when they reintubated him this last time because his airways were so swollen. They've upped his feedings again. He's at 30ml now. He's maintaining weight despite the diuretic. Tonight we got a call from the nurse manager. One of the nurses who regularly works with Owen has shingles. The entire section of the NICU that she worked in is at risk, but Owen is more so, because she often works directly with him, and because she did so when he was off the ventilator. That made him more open and susceptible. The nurse manager asked me if I had chicken pox. She shared that since I have, he is a little less susceptible. He's now in isolation. When we visit we have to wear rubber gloves, face masks, and covering for our clothes. If he has the virus it will be in incubation until Sunday. They're running tests, but the accuracy of them is weak at this point because the steroids mask it. So we have to kind of wait and see. They say this has happened a few other times in the last ten years or so, and the babies have not been infected. Please pray for Owen. He's pretty compromised. Chicken pox would not be an easy journey for him.

We're still on the roller coaster....

Owen is back on the ventilator. He did well without it for about 16 hours, but had a drop in his breathing abilities and they put him back on. Yesterday was a rough day. It was hard to put the tube back in with the swelling in his airways. His lungs look good and seem to be functioning well. Its his airways that continue to make it difficult for him to breath. He's back on steroids to help with the immediate anti-inflammatory efforts. They brought in a pediatric pulmonologist, and are looking at a longer acting steroid that's safe for him to stay on until the next extubation. The hope is to give it another week and then try it again after the swelling in his airways has decreased.
He weighs 3 lbs and almost 12 oz. He's still growing. His blood counts are good today. He's been resting well.

A short clip

Owen was discovering the benefits of moving his lips without a big tube in the way. He was busy blowing bubbles with his slobber. It was so cute!

Owen's off the Ventilator!!!

They took him off the ventilator at 1:30 today. He's on a high flow nasal cannula. His oxygen level with that is as low as it was on the ventilator. They've checked his blood gases and monitored his levels. All is well. We went up early today and took it all in. He was resting very well. A couple of times he managed a little squeak through his sneezes, but he hasn't found his sound yet in crying. We can't wait to hear his cries.
He's using more energy to breath. He had a little more difficulty maintaining his temperature, but he was bundled up a little more and did well staying warm. They'll be checking his weight later tonight. He's burning more calories now, so he may lose a little weight.
They'll check his blood gases again in the morning. We're hoping and praying that he continues to do well.

Owen is down to 10 on the ventilator. They report that he handled the decrease with ease, and they may extubate him later today. I'm so excited and so nervous. Please pray for our little guy. 

Owen is doing pretty well. He continues to move down on the ventilator a little each day. The talk is to have him off of it at the end of the week. He's being weighed on a new scale; now that his bed is no longer also a scale. He seems to be maintaining weight pretty well, even with the diuretic. He's closer to 3 lbs and 9 oz now. He hasn't lost yet.

Yesterday was a good day! Owen had his eye test, and his condition has improved. They will continue to check on it every week. We're not out of the woods yet, but things are looking better for his vision. He weighs 3 lbs and 8 oz. That's been steady for 2 days now. He's taking a new diuretic that is safe to take longer. This is in effort of helping him not hold so much fluid on his lungs. His ventilator settings are steadily being lowered. His gas levels have been good. He also graduated to a new bed which is open. As long as he holds his temperature up, he'll get to stay out of the incubator. Thanks for the thoughts and prayers.