Sunday, April 29, 2012

Owen continues to do well this morning. His blood gases are where they need to be. He's maintaining steady progress with the lower settings on the oxygen.

Saturday, April 28, 2012

Owen is still doing well. His blood gases have been good. They'll be checking them again in the morning. He is going to be moved down again on his oxygen level a little bit. He's breathing well and resting well. Thanks for the thoughts and prayers.

Friday, April 27, 2012

So far so good....

They removed the tube and turned off the ventilator at about 10:30 this morning. He's on the high flow nasal cannula, and looks to be doing well; breathing with ease. His blood gases were good shortly after and they've already turned the oxygen down a bit. Last time they took him off, he did well for about 16 hours. We're hoping and praying this time is for good. 

Thursday, April 26, 2012

Tomorrow's the big day!

Owen was doing well tonight during our visit. Everything is set for extubation tomorrow morning around 8am. They decided to do it early so they'll have the day to monitor how he's doing.

We are hoping these are the last pictures of Owen with his tube.

 He loves having his lips cleaned and sucking on this little thing.

A new picture with his monkey.

Wednesday, April 25, 2012

Owen is still doing well. They've turned his ventilator down a little each day. Tomorrow he starts the steroid to get ready for the big day on Friday. They said they'll be taking him off the ventilator at around 2:00pm friday if all is still going well. We'll be hoping and praying for the best! He now weighs 4 lbs and 9 oz. He is a growing boy! They've raised his feedings again up to 35ml. He's moved up another diaper size. Tonight he was peaceful during holding time and then so awake after his assessment. He was very cute with his sweet eyes open big and watching his mobile go around in circles. Tomorrow was his due date. He's sure come a long way since February 5.... Hoping Friday is the beginning of our home stretch.

Monday, April 23, 2012

Today was a good day. Owen had another eye test. The condition is regressing, and since he's almost term now the risk of it worsening at this point is very low. He doesn't have to have another test for 2 weeks!! He's been more relaxed today. The OT and the PT had a visit with him today. They'll be checking him out; assessing his muscle tone and such. They'll be teaching us some baby massage techniques! He's breathing well. They turned down his settings again today on the ventilator. The nurses were saying they could hear him crying a little bit today. That's a good sign that the swelling in his airway has decreased enough for him to have breath and sound around his tube. We're still hoping and praying that Friday is the day! We thank you for all the love and prayers. Please continue.

Sunday, April 22, 2012

Owen is resting well now. He's had an overall restless day today. Early this morning he was very agitated and to the point of throwing up. They had to give him some versad to help him relax. They're working really hard to keep him from pulling his tube out. Our poor little guy wants to be done with the ventilator. He's a term baby now, and he's ready to be more active. That tube makes it hard for him to move around.
On Wednesday he'll start another steroid course, and if all goes well, they'll try him off the ventilator on Friday. Please pray for him and send him all the positive energy you can. Thursday the 26th was his due date. That was the initial talk of when he would come home. It looks like we've got a way to go.

He weighs 4lbs and 3oz.

Saturday, April 21, 2012

Owen is doing well today. There haven't been a lot of changes in the past couple of days. He's been resting well, taking it easy, and leaving his tube alone. He's been desating less and less and recovering well when he does. He's on a new ventilator. Its called the NAVA and it helps him to be more independent with his breathing. Its pretty amazing how it works. It only helps him when he needs it, so he's breathing a lot more on his own. One more step to being off the ventilator. We so hope its soon, and that there's no going back.

Thursday, April 19, 2012

Owen's eye exam today showed no worsening of the condition. He's on an inhalant steroid treatment now every 12 hrs to help with the airway issue. The inhaled steroid is better because it doesnt have the same level of side effects. The hope is to try him off the ventilator in a week or so, if all goes well. They've increased his feedings again. He's at 32 ml every 3 hrs. He's still maintaining 4.1 lbs.

Wednesday, April 18, 2012

Owen is doing pretty well. He's back down to 15 on the ventilator setting. His oxygen level is down to 21. And he didn't desat while we were there tonight. He weighs 1.86 kilograms. That's 4.1 pounds!!! They're starting him on some Zantac. The pulmonologist suggested it; saying it may be reflux that's causing the irritation in his airway. It's time to wait and see again. Looks like he is at kosair to stay. They feel with his difficulty getting off the vent and staying off, it would be best. All the specialists are there, they say, and it works better in his favor. Seems to me, he gets lost in the crowd there. He used to get so much attention at university. At kosair, there are so many babies, and so many more fragile than him. If nothing else, it helps me count our blessings. Things could always be more challenging. Please keep praying for him. Tomorrow he has another eye exam. And we don't yet know even a tentative plan toward extubation.

Tuesday, April 17, 2012

Owen Airway Looks Good!

We got very good news about Owen's airway today. It looks like it has minimal swelling and no scarring which is the best news. It's possible he has weakened throat muscles from not having to use them for so long, but mostly the only treatment they think he needs is more growth and time. So we'll see.

We're a little confused now about our stay at Kosair. Now that he doesn't need any type of surgery, we're not sure if they want us to stay there or not. Yesterday they were saying that he would stay at Kosair until he went home, and today we were asked several times about our plans to stay or go back to University. We would prefer not to move him again, but hopefully that will resolve itself in the next few days. So many things to think about!!! At least little Owen doesn't need a tracheostomy or something crazy like that. A little payer answered.

Monday, April 16, 2012

Owen Copies his Parents and Decides to Move

Owen pulled his ventilator tube twice yesterday. The second time was in the middle of the night and it was difficult to get the same size tube back in his throat. Dr. Robinson at U of L was concerned this morning that his throat was still so swollen despite his steroid treatments. She called us both after morning rounds and suggested that we authorize a transfer to Kosair Children's Hospital to get a Bronchoscopy performed to see exactly what is causing his airway troubles.

Owen was whisked away to Kosair around noon today and he is resting comfortably in the enormous NICU there. It's the seventh largest in the country apparently and is so different than what we had at University. It's a big change for all of us and we're nervous and anxious to know what the outcome of these throat images will be. The procedure should happen around 3:30 tomorrow afternoon. We will be able to be with him the whole time. We'll try to post tomorrow to fill everyone in. We hope it's something on the more easily treatable end of the spectrum.

Kosair will more than likely be Owen's last stop before coming home. We have to say goodbye to all the NICU mom's at U of L Hospital tomorrow. There were some wonderful, caring ladies over there that we really grew to love, and you could tell they loved Owen too. It's pretty sad to leave them, but we know it's best for Owen to find out what's causing his airway problems. Another big day in the Owen saga. Say a little prayer for our little man!

Sunday, April 15, 2012

Owen's First Bath!!

Now He's Comfortable

Owen - All Clean and Adorable

Last night we got some good news. The test showed that Owen has some immunity to chicken pox. He's not completely in the clear, but it looks a lot better, and he doesn't have to be in isolation anymore.
He got his first real bath in a little tub during our visit last night. We got to help! He seemed to like it and he was very relaxed afterward. --We took pictures. I'll add them soon.
He weighs 1724 grams. That's 3 lbs and 13 oz.
This will be the fourth day of his steroid course. Wednesday will be the last day, and when they try him off the ventilator again. He's still low on his settings. Hopefully that will be the day!

Friday, April 13, 2012

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.

Thursday, April 12, 2012

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.

Tuesday, April 10, 2012

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. 

Monday, April 9, 2012

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.

Saturday, April 7, 2012

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.

Thursday, April 5, 2012

Owen is on a yo-yo diet

After a few days of up and down weight gain, Owen is up again to nearly 3 pounds 8 ounces! He has had a good day today and Mom Is doing kangaroo care right now. We're supposed to hear how his eyes problems look tomorrow night at 6 PM. We'll let everyone know how that goes. We are so worried about him and we hope we get great news that his eyes have improved and that he doesn't need surgery right now. Thanks for all the thoughts and prayers! Our little family has needed them lately.

Wednesday, April 4, 2012

Our sweet little Owen has had a rough stretch. On Monday he was finished with the steroids, but took a turn in the opposite direction than we had hoped. They had to up his settings on the ventilator and raise his oxygen levels significantly. He's had increased secretions and increased fluid. The weight gain we were so excited about, wasn't really a great thing. It has been fluctuating since Monday, but is still around 3lbs and 4oz. Yesterday and today, things have improved, but they're still not where they were or where they need to be for him to get off the ventilator. His next eye exam will be tomorrow or Friday. Please keep him in your thoughts and prayers.

Sunday, April 1, 2012

Owen weighs 3 lbs and 6 oz. He's 16 inches long. They've increased his feedings to 25 ml. He's a growing little boy. He's down to 15 on the ventilator, and his gas levels were excellent this morning. Hopefully, Owen will not need the ventilator soon. Today was day two on the steroids. We're praying it all lines up.