It's now been about 2 days since Luke had his eye procedure and he's doing much better. He was still pretty out of it most of the day on Friday while his mom sat by his bedside all day and it wasn't until a little later at night, once Stacy had left that he decided to wake up and pull out his own breathing tube. Typical Luke, doing things on his own, when he wants.
He's back on full feedings and his eyes look much better than they did right after the procedure. A lot less red and puffy. Best of all, not only is he off of the ventilator again, but they've actually been able to leave his canula off between feedings so there is a good chance that he might not need to come home on oxygen, but we'll have to see if he can keep it up for the next 48 hours or so.
We're still looking at possibly Monday or Tuesday for Luke to come home and we'll probably have him on monitor when he's home, just for extra peace of mind and caution.
Just a few more days! We'll keep you all posted.
Saturday, February 27, 2010
Thursday, February 25, 2010
Eye Procedure (Update)
As of 9:40pm, Luke has begun his recovery from his corrective eye procedure. The surgeon said it went well and that we'll just have a follow up appointment with him in 2 weeks to make sure everything is progressing. Luke is still sedated and probably won't start to come around until early morning on Friday. He's still on the breathing tube and ventilator, but at low pressures and they hope that by late tomorrow afternoon he'll back back on his trusty canula/wall-air.
His little eyes are red and puffy which they said is normal, but it's still hard to look at him because he's gone through so much already and we hate to see him in any more pain or discomfort.
It was also strange being back in the same procedure room where they did his PDA valve surgery so many weeks ago. It seems like ages ago and that was the first time we were able to give him a little kiss on his head. It reminded us of how much he's gone through since then and just how strong he is.
It's tough, but we know he'll be much better in a few short days and will finally be able to come home with us.
Please keep him in your thoughts and prayers as always and we'll post updates as soon as we can. Thanks.
His little eyes are red and puffy which they said is normal, but it's still hard to look at him because he's gone through so much already and we hate to see him in any more pain or discomfort.
It was also strange being back in the same procedure room where they did his PDA valve surgery so many weeks ago. It seems like ages ago and that was the first time we were able to give him a little kiss on his head. It reminded us of how much he's gone through since then and just how strong he is.
It's tough, but we know he'll be much better in a few short days and will finally be able to come home with us.
Please keep him in your thoughts and prayers as always and we'll post updates as soon as we can. Thanks.
Eye Procedure
We found out this morning that Luke will need to have the corrective eye procedure done. It is scheduled for 5pm tonight. While we know that this will postpone him coming home to us for a few days, it's for his own good and we're hopeful the procedure will go well.
Please keep him in your thoughts and prayers and we'll let you know the results and details as we get them.
Please keep him in your thoughts and prayers and we'll let you know the results and details as we get them.
Tuesday, February 23, 2010
Sooner Than We Thought...?
Well, we received some news yesterday from the doctors. Depending on the results of Luke's eye exam on Thursday, he could possibly come home as early as Friday, but more likely will come home over the weekend!
Chances are he will be coming home on oxygen, which means we'll be given a monitor and a small portable oxygen tank and Luke will remain on the canula while at home and we'll continue to wean him off of it here. We'll have to go through a short training session on the equipment as well. Thursday night we'll be participating in an infant CPR training class and Friday night we'll probably be doing what they call "Care By Parent", which is where we spend the night at the hospital in a special room where we'll take care of him by ourselves without any nurse assistance (unless needed) as sort of a practice run before he comes home.
If the eye exam on Thursday ends up showing that his eyes have continued to get worse, there is a good chance he would end up having a procedure done on Friday to correct it and would remain in the NICU for a few more days as he recovers from it.
We'll keep you all posted. We can't believe we're so close! Thanks again everyone.
Chances are he will be coming home on oxygen, which means we'll be given a monitor and a small portable oxygen tank and Luke will remain on the canula while at home and we'll continue to wean him off of it here. We'll have to go through a short training session on the equipment as well. Thursday night we'll be participating in an infant CPR training class and Friday night we'll probably be doing what they call "Care By Parent", which is where we spend the night at the hospital in a special room where we'll take care of him by ourselves without any nurse assistance (unless needed) as sort of a practice run before he comes home.
If the eye exam on Thursday ends up showing that his eyes have continued to get worse, there is a good chance he would end up having a procedure done on Friday to correct it and would remain in the NICU for a few more days as he recovers from it.
We'll keep you all posted. We can't believe we're so close! Thanks again everyone.
Sunday, February 21, 2010
Bottles Only, Please
Saturday was a big day for Luke. First off, apparantly he decided he was done with his feeding tube and yanked it out by himself, which we were surprised to hear and happy as well because the nurses say that he's eating enough through his bottle feedings and so they won't be putting it back in unless he has a setback with his eating.
He's also off his caffeine supplement that were giving him which was helping with his occassional apnea. They'll monitor him for a few days to see if he can remain off of it without having any spells, but so far so good.
Lastly, he's up to 3lb 15oz and will get weighed again on Sunday night. He seems to be in one of his cruising stages again where he makes rapid progress so we'll hope that continues. One of his nurses mentioned to me yesterday that we'll probably need to bring in his car seat soon for the "car seat test", which is one of the final tests before going home to see if he can be comfortable enough without having any issues while sitting in it for 90 minutes. Either way, he's still going to need to be there until at least next Thursday when he has another follow up eye exam. Right now, his eyes and the oxygen are the last two hurdles before he can come home, so we'll see how he does this week. The finish line is almost within sight!
He's also off his caffeine supplement that were giving him which was helping with his occassional apnea. They'll monitor him for a few days to see if he can remain off of it without having any spells, but so far so good.
Lastly, he's up to 3lb 15oz and will get weighed again on Sunday night. He seems to be in one of his cruising stages again where he makes rapid progress so we'll hope that continues. One of his nurses mentioned to me yesterday that we'll probably need to bring in his car seat soon for the "car seat test", which is one of the final tests before going home to see if he can be comfortable enough without having any issues while sitting in it for 90 minutes. Either way, he's still going to need to be there until at least next Thursday when he has another follow up eye exam. Right now, his eyes and the oxygen are the last two hurdles before he can come home, so we'll see how he does this week. The finish line is almost within sight!
Thursday, February 18, 2010
Inching Closer
Another week at the NICU is nearing its end and Luke is continuing to work towards overcoming his last few obstacles.
Today he had another eye exam and the doctor said he will continue to monitor it weekly. It did get a little worse from last week's examination, but we'll remain hopeful that it will flatten out and begin to regress back to normal without needing any intervention.
He's getting better and better with his bottle feedings and now with breastfeeding as well. In the last day or two, he's been able to get the majority of his feedings by bottle or mom and if he continues to do well and not require any supplemental feedings through his NG tube, they may be able to remove it soon.
Oxygen on the other hand is still a hurdle he needs to clear. Even though he's very close to being off it completely, he can't seem to be able to overcome the need for that last little puff of air. The pulmonary specialist saw him again today and will continue to monitor his progress to see if there anything else they can do to help him shake his dependence on the canula.
He's up to 3lb 11oz now so we're nearing the 4lb mark which will be another great milestone. He should get there quickly as his feedings are now up to 45ML's and he definitely lets us and his nurses know when he's hungry as his cry has a little more angst these days, which shows his lungs are healing nicely. The X-Ray they took today showed this as well.
Please keep praying as we head towards the finish line and as always, thank you all very much.
P.S. Sorry for the lack of updates this week!
Today he had another eye exam and the doctor said he will continue to monitor it weekly. It did get a little worse from last week's examination, but we'll remain hopeful that it will flatten out and begin to regress back to normal without needing any intervention.
He's getting better and better with his bottle feedings and now with breastfeeding as well. In the last day or two, he's been able to get the majority of his feedings by bottle or mom and if he continues to do well and not require any supplemental feedings through his NG tube, they may be able to remove it soon.
Oxygen on the other hand is still a hurdle he needs to clear. Even though he's very close to being off it completely, he can't seem to be able to overcome the need for that last little puff of air. The pulmonary specialist saw him again today and will continue to monitor his progress to see if there anything else they can do to help him shake his dependence on the canula.
He's up to 3lb 11oz now so we're nearing the 4lb mark which will be another great milestone. He should get there quickly as his feedings are now up to 45ML's and he definitely lets us and his nurses know when he's hungry as his cry has a little more angst these days, which shows his lungs are healing nicely. The X-Ray they took today showed this as well.
Please keep praying as we head towards the finish line and as always, thank you all very much.
P.S. Sorry for the lack of updates this week!
Monday, February 15, 2010
A Little Elbow Room
Over the weekend, Luke earned himself a little extra room and was able to ditch his cramped isolette to a shiny new hospital crib. He's been doing well at maintaining his body temperature outside of the isolette, so it looks like he'll be able to stay in there. It's nice for Stacy and I, because it's a lot easier to pick him up to hold him and feed him without having to maneuver him out of the little isolette door. He also has a mobile we brought from home and a little musical turtle thing (from the hospital) that can give him a little entertainment too.
He's also continuing to learn how to bottle feed, but is still getting the hang of it. It's been hit or miss as sometimes he's been able to take his whole feeding and other times he only takes a few ML's before tiring out or just losing interest, in which case they just give him the rest through his NG (feeding) tube. With a little time, he'll get it all figured out and he'll be growing like a weed.
He's also continuing to learn how to bottle feed, but is still getting the hang of it. It's been hit or miss as sometimes he's been able to take his whole feeding and other times he only takes a few ML's before tiring out or just losing interest, in which case they just give him the rest through his NG (feeding) tube. With a little time, he'll get it all figured out and he'll be growing like a weed.
Saturday, February 13, 2010
Getting Close...but a Little Ways to Go
Friday afternoon we had our family meeting update with Luke's doctor and it was mostly good news. He's getting very close on all of the things he needs to do to be ready to go home.
He's on VERY minimal oxygen support right now, although they did switch him yesterday from the "wall-air" canula back to the blended air, which they explained wasn't really a step back as much as just a side step. With the blended air, it's a lower % of oxygen vs. the "wall-air" and the flow he is on is minimal, much less than the 1.0 liter he was on last time on the blended.
He has to be able to take and handle full feedings from a bottle. He just started bottle feeding this past week and is still learning, but he's getting closer on that as well.
He can't be having any de-sat "spells", which have been less frequent in general lately and they think will start to go away completely.
His eyes are the last challenge. The eye doctor saw him on Thursday and said that he does show the usual progression that preemies often show that could require the laser eye procedure, but he's going to take a look again next week and watch it closely. With some luck it will just go back to normal and not require anything special.
The bottom line is they expect that he should be able to come home in 2-4 weeks...so it's definitely soon! We're excited and nervous all at the same time. It was good to hear those things, but then Luke wasn't having the best day after the meeting which kind of put a damper on it. We think he had a bellyache because he was crying when we were trying to feed him and the nurses said he was overdue for a poop. As of this morning (Saturday), he's doing a little better but we'll have to see how he does with the feedings today.
He's on VERY minimal oxygen support right now, although they did switch him yesterday from the "wall-air" canula back to the blended air, which they explained wasn't really a step back as much as just a side step. With the blended air, it's a lower % of oxygen vs. the "wall-air" and the flow he is on is minimal, much less than the 1.0 liter he was on last time on the blended.
He has to be able to take and handle full feedings from a bottle. He just started bottle feeding this past week and is still learning, but he's getting closer on that as well.
He can't be having any de-sat "spells", which have been less frequent in general lately and they think will start to go away completely.
His eyes are the last challenge. The eye doctor saw him on Thursday and said that he does show the usual progression that preemies often show that could require the laser eye procedure, but he's going to take a look again next week and watch it closely. With some luck it will just go back to normal and not require anything special.
The bottom line is they expect that he should be able to come home in 2-4 weeks...so it's definitely soon! We're excited and nervous all at the same time. It was good to hear those things, but then Luke wasn't having the best day after the meeting which kind of put a damper on it. We think he had a bellyache because he was crying when we were trying to feed him and the nurses said he was overdue for a poop. As of this morning (Saturday), he's doing a little better but we'll have to see how he does with the feedings today.
Wednesday, February 10, 2010
Bottom's Up
First off, our family meeting appointment that was supposed to happen on Tuesday was postponed to Friday due to the blizzard, so no news on that. But...
Today, Stacy and I had our first bottle feeding lesson with Luke and his specialists today. Feeding a baby a bottle never really looked to be that complicated and for most full-term babies, it's not, but with extreme preemies like Luke, there is a little more work involved.
Thankfully he's doing really well with it. We've got a smart boy on our hands. He's picking it up quickly and has been taking anywhere from 20 to 25ML's of his 34ML feedings the past two days by bottle. His real only problem is he's a fast eater and wants to drink it all at once and doesn't always remember to breathe once and awhile - which is where the lessons come in. Until he's bigger and gets better at it, we have to watch him carefully and do it in sort of a rhythmic fashion where we count a few seconds, tilt the bottle back, and so on.
Just the experience of giving him his first bottle as parents was pretty awesome. Just a few weeks ago, normal things like feeding him a bottle seemed so far away, but it's another sign that we're nearing the end of the NICU journey. His one nurse mentioned that his transfer over to the famous "Pod G" (also known as the "Feeders and Growers" room) could be soon and it's one of the last steps before getting sent home. His other nurse also gave us an envelope marked "Discharge Instructions", which contained a bunch of papers that made up sort of a "baby manual" that was written more for full-term babies, but still applies to us. All great things to see and hear...but we also know we're running out of time to finish his room. Time for us to get busy!
Today, Stacy and I had our first bottle feeding lesson with Luke and his specialists today. Feeding a baby a bottle never really looked to be that complicated and for most full-term babies, it's not, but with extreme preemies like Luke, there is a little more work involved.
Thankfully he's doing really well with it. We've got a smart boy on our hands. He's picking it up quickly and has been taking anywhere from 20 to 25ML's of his 34ML feedings the past two days by bottle. His real only problem is he's a fast eater and wants to drink it all at once and doesn't always remember to breathe once and awhile - which is where the lessons come in. Until he's bigger and gets better at it, we have to watch him carefully and do it in sort of a rhythmic fashion where we count a few seconds, tilt the bottle back, and so on.
Just the experience of giving him his first bottle as parents was pretty awesome. Just a few weeks ago, normal things like feeding him a bottle seemed so far away, but it's another sign that we're nearing the end of the NICU journey. His one nurse mentioned that his transfer over to the famous "Pod G" (also known as the "Feeders and Growers" room) could be soon and it's one of the last steps before getting sent home. His other nurse also gave us an envelope marked "Discharge Instructions", which contained a bunch of papers that made up sort of a "baby manual" that was written more for full-term babies, but still applies to us. All great things to see and hear...but we also know we're running out of time to finish his room. Time for us to get busy!
Monday, February 8, 2010
Enjoying the Silence
As of Monday night, Luke is a hefty 3lb 5oz and is now getting his feedings in 1 hour vs. the 3 hours he was getting them previously and he's doing great with it. The specialists gave him a once-over today and said that he still has some learning to do (with eating, swallowing, etc.), but they'll continue to work with him and track his progress. His nurse gave him his second "test bottle" anyway and he was able to drink 10 of the 15ML's, which sounds good to us!
The best part of the visit though was when I held him for over 40 minutes and during the entire time, he didn't de-sat (or over-sat) once. I know this sounds good, but it's hard to describe how incredible that silence felt. For the first time I was able to hold him, while he slept and didn't have to hear "DING DING DING DING" every few minutes. I'm not sure anyone who's never spent any time with a baby in a NICU can really appreciate what it's like, but it's probably the top 5 most peaceful moments I've ever felt. While I held him, taking in the moment, I looked around at his little area, at the decorations on his wall and window, his monitor and really started to feel like we're in the home stretch. That soon, this will become a distant memory and Luke will be at home with us.
On Tuesday we have our next family meeting with his doctor and we'll be getting his progress report and an updated timeline. We'll let you all know what they say. Until then....good night.
The best part of the visit though was when I held him for over 40 minutes and during the entire time, he didn't de-sat (or over-sat) once. I know this sounds good, but it's hard to describe how incredible that silence felt. For the first time I was able to hold him, while he slept and didn't have to hear "DING DING DING DING" every few minutes. I'm not sure anyone who's never spent any time with a baby in a NICU can really appreciate what it's like, but it's probably the top 5 most peaceful moments I've ever felt. While I held him, taking in the moment, I looked around at his little area, at the decorations on his wall and window, his monitor and really started to feel like we're in the home stretch. That soon, this will become a distant memory and Luke will be at home with us.
On Tuesday we have our next family meeting with his doctor and we'll be getting his progress report and an updated timeline. We'll let you all know what they say. Until then....good night.
Sunday, February 7, 2010
The Latest // Thank You!!
First off, Luke is doing very well. As of yesterday, the doctors were able to move him one step closer to being off of his oxygen completely. Right now he is just on a type of straight air canula that doesn't give any liter flow (pressure) and instead is just a very small amount of oxygen. They also tried giving him a bottle feeding for the first time, just as a test. It was only 8ML's of milk and he took about 5ML's of it, so that seems to be a good sign. Early this week he will be evaluated by the specialists who will check on his ability to swallow and other developmental progress. If they give their "stamp of approval", that means they will continue to attempt bottle feedings and supplement whatever he doesn't take from a bottle with the feeding tube.
It was really great to see him doing so well after being in California for work all week and not getting to see him at all. We had a busy visit with him on Saturday along with Luke's Grandma "Swannie" and Auntie Amber who got to see him through the visiting door.
We have a meeting with his doctor on Tuesday so we should be getting a full progress report on him and possibly even a tentative release date. We're pretty sure he has a few weeks left there, but we're starting to feel like we're entering the home stretch. As always, we'll keep you all posted.
Lastly, we wanted to just thank everyone who came out to the benefit that a few of our friends put together for us at Jets Saturday night. It was really incredible and we hope everyone had as great of a time as we did.
We have a meeting with his doctor on Tuesday so we should be getting a full progress report on him and possibly even a tentative release date. We're pretty sure he has a few weeks left there, but we're starting to feel like we're entering the home stretch. As always, we'll keep you all posted.
Lastly, we wanted to just thank everyone who came out to the benefit that a few of our friends put together for us at Jets Saturday night. It was really incredible and we hope everyone had as great of a time as we did.
Thursday, February 4, 2010
Daddy Look What I Can Do
Luke and I are missing daddy while he is away for work in California. I have been given the blog responsibility. While daddy is away Luke is continuing to be at room air 21% oxygen and his nurses keep challenging him to go lower and lower on his flow. As of last night when I left he was at 1.5L and his nurse was going to bring him down to 1.25L that night. When I called to check in on him late last night he was handling this change very well. To my surprise, when I called this afternoon, they had lowered him some more, down to 1L. I think we had mentioned earlier that at 1L flow he can try taking a bottle. When his doctor called today to give me his daily update I asked how long he had to be on 1L before we could try the bottle. She said as long as he is doing well on 1L it would be about a day. So that means by this time tomorrow our little boy may be taking his first bottle. They had told us that when he does start he may take a bottle for one of his feedings and then the next he would get through his tube. This is because he will tucker our and need to rest up the next time around.
Another thing his nurse had mentioned was that they want him off of the caffenine, but she felt he is not ready for that. I am a little nervous because he is doing well getting weaned off the oxygen, but he also has help from taking the caffenine as well as Diarell. I think we all agree that the most important thing right now is getting him off the oxygen and then we can worry about getting him off some of the medicines he is on. I told John that while he was away Luke would try to do his best and we can't ask for much more than that. Here is a recent photo, sorry I don't know how to add video yet.
Another thing his nurse had mentioned was that they want him off of the caffenine, but she felt he is not ready for that. I am a little nervous because he is doing well getting weaned off the oxygen, but he also has help from taking the caffenine as well as Diarell. I think we all agree that the most important thing right now is getting him off the oxygen and then we can worry about getting him off some of the medicines he is on. I told John that while he was away Luke would try to do his best and we can't ask for much more than that. Here is a recent photo, sorry I don't know how to add video yet.
Tuesday, February 2, 2010
Weekend Update
Well another weekend has come and gone. We are happy to say that Luke has cracked the 3lb mark and is
15 1/2 in long. Our visits with him have been good. Since he is getting bigger we are able to share the time that we are holding him. Before we had to take turns. One night was mine and one was his. We really enjoy our one on one time with Luke and I think he does too.
He has been on low oxygen and yesterday he was at room air 21% for most of the day. Therefore, last night they were able to wean his flow to 1.75L and he is still only requiring 21% oxygen. Also, during that visit Luke was very awake and active. While in his isolette he was playing with daddy. He would grab daddy's finger with his hand and try to pull it into his mouth so he could suck on it. Eventually he was content just sucking on his own hand.
When we got him out to hold him we gave him his pacifier, which he absolutely loves. He was sucking on it for a long time and when he started to fall asleep we put it away. That is when we were really able to hear Luke's cries. We were trying to comfort him and figure out why he was crying. When singing and rocking him didn't work we tried the pacifier again. Yup, that was it. Our little boy sure loves his pacifier already. With each day Luke has more and more of a personality. We can't wait to see what he shows us next.
15 1/2 in long. Our visits with him have been good. Since he is getting bigger we are able to share the time that we are holding him. Before we had to take turns. One night was mine and one was his. We really enjoy our one on one time with Luke and I think he does too.
He has been on low oxygen and yesterday he was at room air 21% for most of the day. Therefore, last night they were able to wean his flow to 1.75L and he is still only requiring 21% oxygen. Also, during that visit Luke was very awake and active. While in his isolette he was playing with daddy. He would grab daddy's finger with his hand and try to pull it into his mouth so he could suck on it. Eventually he was content just sucking on his own hand.
When we got him out to hold him we gave him his pacifier, which he absolutely loves. He was sucking on it for a long time and when he started to fall asleep we put it away. That is when we were really able to hear Luke's cries. We were trying to comfort him and figure out why he was crying. When singing and rocking him didn't work we tried the pacifier again. Yup, that was it. Our little boy sure loves his pacifier already. With each day Luke has more and more of a personality. We can't wait to see what he shows us next.
Subscribe to:
Posts (Atom)