This weather has been awful and it is hard to be in a good mood with all the rain. Right now Ken and I are sitting in the lobby waiting for the rain to let up so we don't get too drenched!
Luke again is showing us that he is running the show. Yesterday the APN wrote that I could hold Luke but before I could get there to hold him, he started showing out. He dropped his oxygen level and they couldn't get it back up even after being suctioned and increasing his oxygen. The doctor put him back on the high frequency vent and turned his nitric up to 10. They stopped his feeding, started his morphine drip back, and did a bunch of tests to look for an infection. They gave him a bunch of sedation but he still was fighting the high frequency vent so they gave him vec- the paralytic. He was doing a lot better in the afternoon. The doctor is thinking he is starting to get an infection so they also started him on antibiotics. Today he is still doing good. He had a head ultrasound that was good and an echocardiogram that showed he still has mild pulmonary hypertension. They will repeat his echo on Monday. Lindsey (his girlfriend/nurse) and I decided that we had stopped giving him his pep talks so he decided to show out. He has had MANY pep talks the last couple days!
Jack is doing great. He has stopped having the heart rate drops and low oxygen levels since they increased his caffeine. The doctors have compressed his feedings and he is currently getting feeds every 3 hours. His feed run over an hour and half. The next step is to decrease the length of time they are running over. We got to start non-nutritive breastfeeding yesterday and he did really well. We get to practice once a day for now. He is wearing clothes all the time and doing well keeping his temp up. Most of the time he is a little warmer than normal. He gets that from me as I am very hot-natured. Ken and I are debating if his hair color is getting blond or red. I think red and Ken says blond. Only time will tell but he looks redheaded in the recent pics I have. I will post pictures tomorrow.
Time to see the boys. More later!
Thursday, October 29, 2009
Monday, October 26, 2009
Rainy Grey (Sad) Day!
It is a sad day because Ken's parents had to go back home to South Carolina today. It was very nice having them here and we tried VERY hard to get them to move here. Although I know they would love to live here in Arkansas, responsibility and obligations won over and they headed home. Dick got everything painted except the window trim. He even went crazy and painted the garage door!! We had an amazing baby shower on Saturday--pictures to come. We got lots of gifts and hopefully with the next shower we will get lots more! It was very nice that Dick and Paula got to be here and participate in the shower.
Jack is doing okay. He is having lots of episodes where he is dropping his heart rate and also his oxygen level. They turned his oxygen up to 2 liters and increased his caffeine medication. Caffeine helps stimulate the preemies and helps them remember to breathe. The medication dose is based on their weight. Jack's current dose was based on a weight taken a couple weeks ago. Basically they think he outgrew his dose and they need to increase it. If that doesn't help his episodes, the doctors will look into the possibility of him refluxing his feeds.
Luke is still doing good. He was having a rough morning but doing better this afternoon! Last night his heart rate was higher than it normally is and his pulse ox (oxygen level) was lower. He received some extra sedation and that helped him for a little while and when I left last night, he was settled down and doing better. This morning his heartrate was back up (close to 200) and his pulse ox was all over the place. The doctors want his oxygen level to be between 85-95%. Luke would be 96%(higher is better than lower) and then 10 seconds later down to 65% and then 5 second later it would 92%. The bouncing pulse ox makes it hard to determine the oxygen amount he needs to be on. The doctors were weaning his nitric (gas for pulmonary hypertension) and he was off of it this morning. An echocardiogram was done this morning which showed pulmonary hypertension coming back. The doctors put him back on the nitric but at a lower setting than he was previously on. They also changed a couple of his vent setting. All that helped Luke and he settled down. His pulse ox was better and his heart rate went back to normal. They will do another echo on Friday and also a head ultrasound and renal ultrasound on Friday. If everything looks good with his heart on Friday, they may try to wean the nitric again.
Both boys are doing good with their tube feeding and they are both growing! Jack is 3 and 1/2lbs and Luke is just over 2lbs. Luke is growing a little slower but he will catch up soon!!
Ken and I are trying to figure out childcare for when the boys come home. There is no way I am putting them into daycare with the flu and RSV season about to be in full swing. Also with all the H1N1 going around, it will be even more scary to send them somewhere. They are so little and are already compromised, I am not going to risk it. Ken really wants to be a stay at home dad and I think that is great. I would love to stay home but I make more money and have more stable work hours than Ken does. We are trying to trim our budget down but it is hard. Are there any tips or advice any stay-at-homers can give us to help stretch our money? Email us at kendb@hotmail.com or raebarnes@hotmail.com
Again thanks for prayers and love that you are sending our way. We appreciate it!! Have a great week and we will be adding pictures soon!!
Jack is doing okay. He is having lots of episodes where he is dropping his heart rate and also his oxygen level. They turned his oxygen up to 2 liters and increased his caffeine medication. Caffeine helps stimulate the preemies and helps them remember to breathe. The medication dose is based on their weight. Jack's current dose was based on a weight taken a couple weeks ago. Basically they think he outgrew his dose and they need to increase it. If that doesn't help his episodes, the doctors will look into the possibility of him refluxing his feeds.
Luke is still doing good. He was having a rough morning but doing better this afternoon! Last night his heart rate was higher than it normally is and his pulse ox (oxygen level) was lower. He received some extra sedation and that helped him for a little while and when I left last night, he was settled down and doing better. This morning his heartrate was back up (close to 200) and his pulse ox was all over the place. The doctors want his oxygen level to be between 85-95%. Luke would be 96%(higher is better than lower) and then 10 seconds later down to 65% and then 5 second later it would 92%. The bouncing pulse ox makes it hard to determine the oxygen amount he needs to be on. The doctors were weaning his nitric (gas for pulmonary hypertension) and he was off of it this morning. An echocardiogram was done this morning which showed pulmonary hypertension coming back. The doctors put him back on the nitric but at a lower setting than he was previously on. They also changed a couple of his vent setting. All that helped Luke and he settled down. His pulse ox was better and his heart rate went back to normal. They will do another echo on Friday and also a head ultrasound and renal ultrasound on Friday. If everything looks good with his heart on Friday, they may try to wean the nitric again.
Both boys are doing good with their tube feeding and they are both growing! Jack is 3 and 1/2lbs and Luke is just over 2lbs. Luke is growing a little slower but he will catch up soon!!
Ken and I are trying to figure out childcare for when the boys come home. There is no way I am putting them into daycare with the flu and RSV season about to be in full swing. Also with all the H1N1 going around, it will be even more scary to send them somewhere. They are so little and are already compromised, I am not going to risk it. Ken really wants to be a stay at home dad and I think that is great. I would love to stay home but I make more money and have more stable work hours than Ken does. We are trying to trim our budget down but it is hard. Are there any tips or advice any stay-at-homers can give us to help stretch our money? Email us at kendb@hotmail.com or raebarnes@hotmail.com
Again thanks for prayers and love that you are sending our way. We appreciate it!! Have a great week and we will be adding pictures soon!!
Friday, October 23, 2009
One Month Old
I can hardly believe that my 2 little monkeys are one month old already!! It seems like it has flown by but also seems like the longest month ever. This week has been great. Ken's parents have been here all week and have really helped out with projects that we needed to get done. As I am sitting here all nice and warm typing this, Dick is outside in the cold and wind trying to finish as much painting as he can get done. He is painting the outside of the house and doing a fantastic job! Paula has cooked dinner for us, cooked us things to freeze, and cleaned. It has been very nice not to have to worry about dinner most of this week. She even rearranged and organized our garage one day because she "needed something to do!"
Dick and Paula have both taken turns holding Jack and he has loved it. He snuggles in and is so cute. Both boys have done really well this week. Jack is down to 1/2 liter of oxygen through his nasal cannula. The doctors are changing his feeding times everyday to try to get him closer to normal schedules. Right now his feeds run 7 hours and then are off for two hours. His tube was pulled back to his stomach a couple days ago and he has done well with that. He got his IV line out 2 days ago and he is doing good. One less line is great and it makes it a little easier to get him out of bed and mess with him.
Luke has done amazing this week. David Martindale came and prayed for the boys on Sunday. During the conversation he said this week was a week for miracles and I believe him. Luke at that time was on so much medication, on a vent that was basically the last resort to improve his lung status, on 100% oxygen, on 20 of nitric, his pulse ox was in the low 80's (90-100 is normal), and the doctors told us they were really worried about him. Every time the nurses, doctors or even me would touch Luke he would drop his heart rate and pulse ox very low and become very irritated. It would then take him a long time to recover and get back up to where he has previously been. Today--only 5 short days later--Luke is on a regular vent, off several of his medications, his sedation has been weaned, on 40% oxygen, on 10 of nitic, and his pulse ox is usually above 96% (unless he is wiggling or needing to be suctioned). He was started on breast milk feeding via a tube (TPT) that bypasses his stomach and goes into his bowels on Tuesday. He is at 0.5 ml/hour and tolerating that without any complications. He will stay on that for several more days before they will increase it any just to make sure that everything is working. He doesn't drop his heart rate or pulse ox when he is touched!! He is a different baby!! Hopefully I will get to hold him soon.
God has done so many miracles in our lives. This month has been full of up and downs. Several times we were close to losing Luke but the prayers of everyone rising up together have saved our little boy. Both are doing wonderful and I know that the only reason is because of the prayers, faith, and love that everyone has shown. I have cried out to God and He has listened and I praise His name for keeping the lives of my boys in His hands and for their healing. We ask for continued prayer as we still have a long journey and many hurdles to overcome. Thanks again for every prayer that you send up. To every person that sent the request to their churches, friends, and prayer groups--thank you too because one more person praying is another voice in the choir rising up to God.
Okay here is the fun part: Pictures!!!!
Here is sneak peak of the house:
Before:
During:
Grandparents holding Jack:
Luke pictures-on his cute blankets too!!:
Paula got to help hold/settle Luke when he got his feeding tube placed--he is holding her finger:
Jack has to gain some more weight before he is allowed to wear clothes all the time but on Thursday I knew his girlfriend...I mean nurse....Lindsey would let me dress him up! Today I put another outfit on him while Paula was holding him. I know that I am prejudice but isn't he SOOO cute in his little outfits!!! Jack and Luke are the cutest little babies in the NICU!!
Here is a picture on Jack getting his first water bath. This is the only picture I could post that did not show his boy parts!! The other pic is him snuggling with me after his bath.
Dick and Paula have both taken turns holding Jack and he has loved it. He snuggles in and is so cute. Both boys have done really well this week. Jack is down to 1/2 liter of oxygen through his nasal cannula. The doctors are changing his feeding times everyday to try to get him closer to normal schedules. Right now his feeds run 7 hours and then are off for two hours. His tube was pulled back to his stomach a couple days ago and he has done well with that. He got his IV line out 2 days ago and he is doing good. One less line is great and it makes it a little easier to get him out of bed and mess with him.
Luke has done amazing this week. David Martindale came and prayed for the boys on Sunday. During the conversation he said this week was a week for miracles and I believe him. Luke at that time was on so much medication, on a vent that was basically the last resort to improve his lung status, on 100% oxygen, on 20 of nitric, his pulse ox was in the low 80's (90-100 is normal), and the doctors told us they were really worried about him. Every time the nurses, doctors or even me would touch Luke he would drop his heart rate and pulse ox very low and become very irritated. It would then take him a long time to recover and get back up to where he has previously been. Today--only 5 short days later--Luke is on a regular vent, off several of his medications, his sedation has been weaned, on 40% oxygen, on 10 of nitic, and his pulse ox is usually above 96% (unless he is wiggling or needing to be suctioned). He was started on breast milk feeding via a tube (TPT) that bypasses his stomach and goes into his bowels on Tuesday. He is at 0.5 ml/hour and tolerating that without any complications. He will stay on that for several more days before they will increase it any just to make sure that everything is working. He doesn't drop his heart rate or pulse ox when he is touched!! He is a different baby!! Hopefully I will get to hold him soon.
God has done so many miracles in our lives. This month has been full of up and downs. Several times we were close to losing Luke but the prayers of everyone rising up together have saved our little boy. Both are doing wonderful and I know that the only reason is because of the prayers, faith, and love that everyone has shown. I have cried out to God and He has listened and I praise His name for keeping the lives of my boys in His hands and for their healing. We ask for continued prayer as we still have a long journey and many hurdles to overcome. Thanks again for every prayer that you send up. To every person that sent the request to their churches, friends, and prayer groups--thank you too because one more person praying is another voice in the choir rising up to God.
Okay here is the fun part: Pictures!!!!
Here is sneak peak of the house:
Before:
During:
Grandparents holding Jack:
Luke pictures-on his cute blankets too!!:
Paula got to help hold/settle Luke when he got his feeding tube placed--he is holding her finger:
Jack has to gain some more weight before he is allowed to wear clothes all the time but on Thursday I knew his girlfriend...I mean nurse....Lindsey would let me dress him up! Today I put another outfit on him while Paula was holding him. I know that I am prejudice but isn't he SOOO cute in his little outfits!!! Jack and Luke are the cutest little babies in the NICU!!
Here is a picture on Jack getting his first water bath. This is the only picture I could post that did not show his boy parts!! The other pic is him snuggling with me after his bath.
Thursday, October 22, 2009
Jack's first outfit
Rachel just sent me this picture. Lindsey (the boys' nurse) let Rachel put Jack's first outfit on him!
Jack's first water bath
Nothing but good news to report. Luke is tolerating his feedings (smallest amount possible - 0.5 ml/hour bypassing his stomach and going straight into his intestines). Since he is doing OK, they will probably not change any oxygen or nitric levels for a few days (oxygen is at 40% and nitric is at 15). Besides his morphine, he has not needed any extra sedation, so he is wiggling around more and starting to open his eyes and look around when we talk to him.
Jack's feedings are going into his stomach and he is on the highest setting for the feeding tube (I think 10 ml/hr). Both sets of grandparents have enjoyed holding him this week. His PICC line was taken out yesterday, so all he has now is the oxygen line around his face and his feeding tube (plus the three probes for heartrate, breathing rate and pulse). While I was at church for Real Life last night, Rachel gave Jack his first water bath - she said he seemed to like it.
Jack's feedings are going into his stomach and he is on the highest setting for the feeding tube (I think 10 ml/hr). Both sets of grandparents have enjoyed holding him this week. His PICC line was taken out yesterday, so all he has now is the oxygen line around his face and his feeding tube (plus the three probes for heartrate, breathing rate and pulse). While I was at church for Real Life last night, Rachel gave Jack his first water bath - she said he seemed to like it.
Tuesday, October 20, 2009
Pictures from Monday
Jack was wide awake and looking all around
He is ready to get rid of his feeding and oxygen tubes and tries to pull on them
Luke looks much better and was calm enough to let nurse Lindsey change his bed - now he has his monkeys just like his brother
He is ready to get rid of his feeding and oxygen tubes and tries to pull on them
Luke looks much better and was calm enough to let nurse Lindsey change his bed - now he has his monkeys just like his brother
Huge milestone for Luke!
Mom and Dad are at the hospital with the boys right now. Rachel called for an update and got some great news - Luke has a feeding tube!!! He is tolerating it so far and will start some very small feedings today. His oxygen level continues to be weaned and they are starting to wean his nitric as well. Luke had an echo-cardiogram this morning to check his heart and the pulmonary hypertension is looking better. He will get a chest x-ray this afternoon to make sure his lungs are looking OK after all of the changes and progress made these last few days.
Jack is still doing great. I stopped by to see the boys yesterday after work and I had never seen Jack so active and responsive. He was wide awake and yawning a lot. His dark eyes were wide open and looking around as he smiled between yawns. He kept touching his face and trying to pull at his feeding tube and oxygen line - he's ready to do things on his own and wants to get rid of them! I held his hand and he tried pulling my finger into his mouth - looks like he is liking the feedings and ready for more.
Jack is still doing great. I stopped by to see the boys yesterday after work and I had never seen Jack so active and responsive. He was wide awake and yawning a lot. His dark eyes were wide open and looking around as he smiled between yawns. He kept touching his face and trying to pull at his feeding tube and oxygen line - he's ready to do things on his own and wants to get rid of them! I held his hand and he tried pulling my finger into his mouth - looks like he is liking the feedings and ready for more.
Monday, October 19, 2009
Luke doing well - 4 days and counting...
Great news today! Luke is doing well and has been stable without any major problems since late Thursday night. His steroids will be finished soon and the doctors are hopeful but very concerned. His lungs have cleared up a little, but if these steroids did not bring improvement, there is only one other kind of steroid they can give him as a last resort. He is just too small and his lungs in such bad shape that if any infection or breathing issues return, it will be time to sit down, hear the options and make some incredibly tough decisions.
Since being put on the oscillator Thursday night, Luke has done VERY well. His oxygen has been weaned down from 100% to 60% without any dramatic changes in pulse and heart rate. This is the point at which Luke usually crashes and has to go back to 100% oxygen, which stabilizes him but is very bad for his lungs. This time, Luke is hanging in there and yesterday was moved out of isolation and back in the same pod as Jack!
Luke is being taken off the oscillator today and will be put on a conventional ventilator (easier on his lungs than the high-frequency vent he had been on). If all goes well, Luke will probably get a TPT tube tomorrow to start feedings. His IV fluids are keeping him stable, but without feedings, Luke really cannot grow and begin to heal. Because of his past episodes, he has been on paralytics to stop muscle movement and keep him from trying to breathe over the vent/oscillator. The feeding tube cannot be put in until the paralytics stop, and hopefully tomorrow will be the day!
Jack continues to do great. All of the grandparents have been able to hold him for the first time this weekend. He is tolerating increased feedings and will have his feeding tube pulled from his intestines up into his stomach to prepare him for real feedings.
Thursday and Friday were bad days, but things have changed incredibly during the weekend. Thanks to Bobby Hamilton, our campus pastor at New Life Church, for making a special mention about Luke to the entire church as he closed in prayer Saturday night. I also want to thank David Martindale, one of the mighty prayer warriors of our church, for visiting the boys yesterday to pray over them. His words were very comforting and encouraging.
We want to thank everyone for their continued prayers. Please continue to lift them up as the next few days are still very critical to Luke's survival and continued improvement.
Since being put on the oscillator Thursday night, Luke has done VERY well. His oxygen has been weaned down from 100% to 60% without any dramatic changes in pulse and heart rate. This is the point at which Luke usually crashes and has to go back to 100% oxygen, which stabilizes him but is very bad for his lungs. This time, Luke is hanging in there and yesterday was moved out of isolation and back in the same pod as Jack!
Luke is being taken off the oscillator today and will be put on a conventional ventilator (easier on his lungs than the high-frequency vent he had been on). If all goes well, Luke will probably get a TPT tube tomorrow to start feedings. His IV fluids are keeping him stable, but without feedings, Luke really cannot grow and begin to heal. Because of his past episodes, he has been on paralytics to stop muscle movement and keep him from trying to breathe over the vent/oscillator. The feeding tube cannot be put in until the paralytics stop, and hopefully tomorrow will be the day!
Jack continues to do great. All of the grandparents have been able to hold him for the first time this weekend. He is tolerating increased feedings and will have his feeding tube pulled from his intestines up into his stomach to prepare him for real feedings.
Thursday and Friday were bad days, but things have changed incredibly during the weekend. Thanks to Bobby Hamilton, our campus pastor at New Life Church, for making a special mention about Luke to the entire church as he closed in prayer Saturday night. I also want to thank David Martindale, one of the mighty prayer warriors of our church, for visiting the boys yesterday to pray over them. His words were very comforting and encouraging.
We want to thank everyone for their continued prayers. Please continue to lift them up as the next few days are still very critical to Luke's survival and continued improvement.
Sunday, October 18, 2009
Hesitant to update!
So I am a little hesitant to update the blog because it seems like every time we update to say that Luke is doing better--later that day he gets worse again! I don't want to jinx it but he is doing a little better. He had a good day yesterday and the nurses were able to decrease his oxygen to 71%! The doctors also were able to wean some of his vent settings. Last night he did good but they left his oxygen and vent settings alone because they didn't want to rush him. I am nervous because every time we get around this point Luke starts backsliding. The nurse told me today that his cultures are not coming back with any type of infection so they are going to move him out of isolation today!! He is going to be a little closer to brother and it will be a lot easier to see him. Yesterday Ken's parents came into town. The NICU and the other ICU's in the hospital are debating whether to restrict all visitors except parents starting Monday. Dick and Paula got to go see the boys yesterday and will see them tonight and hopefully they will not shut out everyone and they will get to see them the rest of their visit. We surprised Paula and let her hold Jack. My dad went last night and got to hold him too. My mom and Dick will get to hold him today. It is hard giving up my time with him but we wanted them to be able to hold him--especially if they ban everyone except us. We will post pictures later!! Thank you for the prayers and words of encouragement. They have helped us more than you know. Ken and I are worn out and emotionally exhausted but we are living one day at a time and trying to do the best we can. Thank you to our parents who have supported us through this time and we appreciate knowing that they are there WHENEVER we need them!! Love you guys!
Friday, October 16, 2009
I don't know how to pray..........
Jack is doing great--still tolerating feeds as they increase them. He is still doing good on his oxygen. He looks around a lot more and snuggles down with us when we hold him. He only cries when he is being messed with and calms down quickly. The last time he was weighed, he was almost 2lbs 13oz!
So Luke takes one little step forward and then end up 5 leaps backwards. He has a great day yesterday until the afternoon and then he got bad again. He had an episode after being suctioned where he dropped his heart rate and oxygen levels. After that his oxygen levels stayed low and they had to turn him back up to 100% oxygen. They did a chest xray--which looked worse. One issue is that Luke tries to breathe over the vent and doesn't let the vent do the work for him. The doctors tried him on a regular vent but his blood gas was worse so they decided to put him on an oscillator. Before they did that the doctor decided to give Lucas Vecuronium which paralyzes muscles to see if that would help him relax and not fight the vent. They also increased his Morphine and Ativan doses to keep him comfortable. Once he was on the oscillator, his gas was a little better and his chest xray looked a little better. They started him back on antibiotics and put a catheter to drain his urine. I was at the hospital until midnight last night while they were doing all this and trying to get him settled. Today he is doing okay--gasses not great but not bad either. He is still on 100% oxygen and his nitric is still at 20%.
So I am so frustrated and don't even know how to pray right now. I keep praying for his healing but that does not seem to be happening. I know that I am impatient but every time he gets a little better, he has huge setbacks. Him being on the oscillator is a big deal and I don't know much more they can do after that. I just look at him and he is so perfect but so sick. I just want him to be better or at least making some consistent progress. I want him to respond to the antibiotics, the other medications, and the vent changes. I keep praying for his healing and that is not working so what else do I pray for? I don't want him to suffer but I want him healthy and better. I know that God has a plan but I cannot and do not want to think that it is anything but healing him. So how do I pray? How do I pray for my little sweet perfect boy?
So Luke takes one little step forward and then end up 5 leaps backwards. He has a great day yesterday until the afternoon and then he got bad again. He had an episode after being suctioned where he dropped his heart rate and oxygen levels. After that his oxygen levels stayed low and they had to turn him back up to 100% oxygen. They did a chest xray--which looked worse. One issue is that Luke tries to breathe over the vent and doesn't let the vent do the work for him. The doctors tried him on a regular vent but his blood gas was worse so they decided to put him on an oscillator. Before they did that the doctor decided to give Lucas Vecuronium which paralyzes muscles to see if that would help him relax and not fight the vent. They also increased his Morphine and Ativan doses to keep him comfortable. Once he was on the oscillator, his gas was a little better and his chest xray looked a little better. They started him back on antibiotics and put a catheter to drain his urine. I was at the hospital until midnight last night while they were doing all this and trying to get him settled. Today he is doing okay--gasses not great but not bad either. He is still on 100% oxygen and his nitric is still at 20%.
So I am so frustrated and don't even know how to pray right now. I keep praying for his healing but that does not seem to be happening. I know that I am impatient but every time he gets a little better, he has huge setbacks. Him being on the oscillator is a big deal and I don't know much more they can do after that. I just look at him and he is so perfect but so sick. I just want him to be better or at least making some consistent progress. I want him to respond to the antibiotics, the other medications, and the vent changes. I keep praying for his healing and that is not working so what else do I pray for? I don't want him to suffer but I want him healthy and better. I know that God has a plan but I cannot and do not want to think that it is anything but healing him. So how do I pray? How do I pray for my little sweet perfect boy?
Automatic updates by e-mail
I have added an e-mail update to the blog. You can enter your email address in the top right corner of our home page to receive automatic updates. They are not instant - if we post an update you will get it via email the next morning - but it should make it a little easier to keep up with us and not miss any updates.
Thursday, October 15, 2009
Big improvement for Luke
Since starting his steroids Tuesday afternoon, Luke has been doing much better! His blood/gas levels still fluctuate quite a bit, but they are averaging over 100 (vs. the 50s he had for a while). This morning he was up to 190, which is great news.
Since these numbers have improved, they are starting to slowly wean his oxygen down. His oxygen has been around 100% for a few days, and normal level is around 20%. Hopefully they will take their time slowly adjusting oxygen and steroid levels so Luke adjusts well and does not have any problems.
Luke's breathing tube either came out or moved around too much this morning, causing his breathing and heart rate to drop. They quickly changed his tube and before long he was doing great again.
Sorry Jack - I know your brother has been getting most of the updates and attention lately. Jack is almost 3 pounds now and is doing well with his feedings. Each day or two they increase his amount, and it is still bypassing his stomach and going straight to the intestines. His next step is to move the feeding tube into his stomach and after a while of tolerating that he can start trying normal milk. Jack is very active now - lots of arm and leg movement. He opens his eyes a lot and follows our voices when we talk to him.
The Barnes grandparents will be here Saturday and stay for a week. It will be their second trip to see them, and they will be surprised at how much Luke and Jack have changed in just 3 weeks.
Since these numbers have improved, they are starting to slowly wean his oxygen down. His oxygen has been around 100% for a few days, and normal level is around 20%. Hopefully they will take their time slowly adjusting oxygen and steroid levels so Luke adjusts well and does not have any problems.
Luke's breathing tube either came out or moved around too much this morning, causing his breathing and heart rate to drop. They quickly changed his tube and before long he was doing great again.
Sorry Jack - I know your brother has been getting most of the updates and attention lately. Jack is almost 3 pounds now and is doing well with his feedings. Each day or two they increase his amount, and it is still bypassing his stomach and going straight to the intestines. His next step is to move the feeding tube into his stomach and after a while of tolerating that he can start trying normal milk. Jack is very active now - lots of arm and leg movement. He opens his eyes a lot and follows our voices when we talk to him.
The Barnes grandparents will be here Saturday and stay for a week. It will be their second trip to see them, and they will be surprised at how much Luke and Jack have changed in just 3 weeks.
Tuesday, October 13, 2009
Luke doing a little better
After days of setbacks, Luke finally made a little progress! His last blood gas was much higher than it has been (90 when it has been in the 50s) and hopefully he can keep it up. The doctors are still trying to decide what to do with his vent settings. He still gets very agitated anytime he is checked or moved, causing heart rate and breathing to go dangerously low every few hours.
His antibiotics are finished and this afternoon steroids were started. The docs expect to see progress from the steroids within 2-3 days.
Jack is doing great. Feeding has been increased he last few days and he is getting 3.5ml/hour. He continues to gain weight and seems to be very happy and comfortable most of the time.
His antibiotics are finished and this afternoon steroids were started. The docs expect to see progress from the steroids within 2-3 days.
Jack is doing great. Feeding has been increased he last few days and he is getting 3.5ml/hour. He continues to gain weight and seems to be very happy and comfortable most of the time.
Luke update
Today has been another bad day for Luke. The doctor changed his breathing tube this morning and he did not tolerate that very well. He dropped his heart rate and oxygen levels a little but he came back up fast. He is back up to 100% oxygen and back up on his vent settings again. He does not look bad but his blood gasses just plain stink! The doctor is going to start him on a different type of steroids and see how he does. They said we SHOULD see results tomorrow or Thursday. Please keep praying for him and that he starts responding to the meds and changes the doctors are making.
Monday, October 12, 2009
Some of Rachels pictures
Ken holding Jack and you can see his name on the corner of the blanket.
Luke resting
Mommy and Jack
Jack: "Leave me alone. I am trying to sleep."
Monday update
We've been at the hospital for a few hours today. Found out how to get wireless access, so it will be easier to post updates while we are here with the boys.
Jack is doing great today! Rachel just finished holding him, changed his full diaper and showed him one of his new monkey blankets.
Luke is a little down today. Oxygen level is back up around 80% and each blood gas check is back and forth. He may be changed to a different ventilator and/or may have his oxygen tube changed - it just depends on how his blood gases look this afternoon.
- Posted using BlogPress from my iPhone
Jack is doing great today! Rachel just finished holding him, changed his full diaper and showed him one of his new monkey blankets.
Luke is a little down today. Oxygen level is back up around 80% and each blood gas check is back and forth. He may be changed to a different ventilator and/or may have his oxygen tube changed - it just depends on how his blood gases look this afternoon.
- Posted using BlogPress from my iPhone
Sunday, October 11, 2009
Some new pictures
Jack getting ready to be held
Ken holding Jack
Eyes wide open
Luke relaxing
Haloween decorations
Good to be back helping at church this weekend
Ken holding Jack
Eyes wide open
Luke relaxing
Haloween decorations
Good to be back helping at church this weekend
Steps Forward and Steps Backward
I know it has been a while since we posted and I know many people have been asking and waiting for our update. Sorry. Ken and I have been busy and most night we are just plain exhausted!
Jack: He is doing great. Still on the oxygen by nasal cannula. He is on 2 Liter and 21% oxygen. 21% oxygen is basically what we normally breathe everyday. He is just needing the flow for his lungs right now. They have not weaned him for a couple days because they just want to take it slow. He is getting continuous feedings through a feeding tube that passes his stomach and goes into his intestines. They are not giving him feeding in his stomach yet and that is to prevent any reflux. They also do not want him to aspirate the feedings into his lungs if he does reflux. He is up to a whole 2 ml an hour. Ken and I get to hold him twice a day (an hour each). I take the daytime holding and Ken holds him when we go back in the evenings. He is opening his eyes a lot more and has a sweet little cry. He likes being held and stops crying as soon as he is settled against us!
Luke: He is on a roller coaster. Some days he is doing great and others are worse. He is still on isolation and getting antibiotics for his infection. The other night his blood gasses were not good at all and the doctors had to go back up on several ventilator settings and back up to 85% oxygen. He did better after the vent changes but they are going to go a little slower on weaning the settings. Today he down to 72% oxygen and they have not really changed much with his ventalator and he is still on 20% nitric (they had gone down to 15% last week but had to go back up on it too) The doctors did a repeat echocardiogram to make sure that is pulmonary hypertension was not back and the echo looked good!! He has received blood the last 3 days but they are checking his labs so often that he just isn't able to keep up with that loss. Even though he has had some bad days, he LOOKS better. He isn't as swollen and his color is a lot better. He is opening his eyes a little when we talk to him but he they keep him pretty sedated with medications.
They weighted each boy the other day and Jack weighted 2lb 8oz and Luke weighed 1lb 10oz. Luke is mostly fluid gain but gain is better than loss!! They will both have a head ultrasound tomorrow to make sure everything still looks good.
Ken and I took blankets to the boys last night. We got to bathe Jack and then we put a new blanket on his bed. We also go Halloween decorations to put on their isolettes. Luke will get a blanket on his bed the next time they change it. One of our friend's mom from church sewed the boys names on the blankets for us and also made really cute pillowcases (that will fit on their beds). We really appreciate that--THANKS!!
On the blog hits--we have 3 new places to add: Ukraine, United Kingdom, and Pakistan! I am amazed at how far spread our blog has gotten and how many people we don't even know are praying for us and the boys. Thank you to everyone who has been and continues to pray for us and the boys. I can see God doing great things in the boys lives and how He continues to heal them and me. I struggle a little on the days Luke is doing worse but I continue to pray for patience, peace, and direction. Even on the bad days I know that God is working and one day (it will get here sooner than we probably realize) we will have 2 healthy baby boys ready to come home!
Jack: He is doing great. Still on the oxygen by nasal cannula. He is on 2 Liter and 21% oxygen. 21% oxygen is basically what we normally breathe everyday. He is just needing the flow for his lungs right now. They have not weaned him for a couple days because they just want to take it slow. He is getting continuous feedings through a feeding tube that passes his stomach and goes into his intestines. They are not giving him feeding in his stomach yet and that is to prevent any reflux. They also do not want him to aspirate the feedings into his lungs if he does reflux. He is up to a whole 2 ml an hour. Ken and I get to hold him twice a day (an hour each). I take the daytime holding and Ken holds him when we go back in the evenings. He is opening his eyes a lot more and has a sweet little cry. He likes being held and stops crying as soon as he is settled against us!
Luke: He is on a roller coaster. Some days he is doing great and others are worse. He is still on isolation and getting antibiotics for his infection. The other night his blood gasses were not good at all and the doctors had to go back up on several ventilator settings and back up to 85% oxygen. He did better after the vent changes but they are going to go a little slower on weaning the settings. Today he down to 72% oxygen and they have not really changed much with his ventalator and he is still on 20% nitric (they had gone down to 15% last week but had to go back up on it too) The doctors did a repeat echocardiogram to make sure that is pulmonary hypertension was not back and the echo looked good!! He has received blood the last 3 days but they are checking his labs so often that he just isn't able to keep up with that loss. Even though he has had some bad days, he LOOKS better. He isn't as swollen and his color is a lot better. He is opening his eyes a little when we talk to him but he they keep him pretty sedated with medications.
They weighted each boy the other day and Jack weighted 2lb 8oz and Luke weighed 1lb 10oz. Luke is mostly fluid gain but gain is better than loss!! They will both have a head ultrasound tomorrow to make sure everything still looks good.
Ken and I took blankets to the boys last night. We got to bathe Jack and then we put a new blanket on his bed. We also go Halloween decorations to put on their isolettes. Luke will get a blanket on his bed the next time they change it. One of our friend's mom from church sewed the boys names on the blankets for us and also made really cute pillowcases (that will fit on their beds). We really appreciate that--THANKS!!
On the blog hits--we have 3 new places to add: Ukraine, United Kingdom, and Pakistan! I am amazed at how far spread our blog has gotten and how many people we don't even know are praying for us and the boys. Thank you to everyone who has been and continues to pray for us and the boys. I can see God doing great things in the boys lives and how He continues to heal them and me. I struggle a little on the days Luke is doing worse but I continue to pray for patience, peace, and direction. Even on the bad days I know that God is working and one day (it will get here sooner than we probably realize) we will have 2 healthy baby boys ready to come home!
Tuesday, October 6, 2009
Another trip for Luke and Jack
Rachel just called me from the hospital. Since Luke's episode last week that caused us to have the boys moved, the doctors have suspected he has some type of infection. The cultures came back today and Luke has MRSA. It is "a bacterial infection that is highly resistant to some antibiotics."
Luke will be moved today to the other end of the NICU and be put in isolation. They will try to move Jack to be closer to him, but Rachel doesn't know how soon that might happen. We should know a lot more tonight or tomorrow.
Luke will be moved today to the other end of the NICU and be put in isolation. They will try to move Jack to be closer to him, but Rachel doesn't know how soon that might happen. We should know a lot more tonight or tomorrow.
Getting some rest
Luke and Jack are doing a little better each day. Their color has improved, both are off the bili lights (Baptist's were blue, Children's are white), and they seem to be very comfortable most of the time (unless they are being moved, getting tests or having blood drawn).
Rachel has been spending mornings and afternoons at the hospital each day and we have been going back after dinner once the nurses change shifts. Last night we left in the afternoon and stayed home to get some rest. It feels bad not spending all of our time with them, but we are both so worn out that we needed to eat dinner, take care of a few things around the house, and get in bed around 7:30pm to catch up on some sleep. It's not worth getting sick, because then we would not be able to see the boys for days...
I'm feeling a little better rested today and should help my head stay clear as I'm finishing forms for insurance, birth certificates, social security, and Rachel's short-term disability coverage. Hopefully most of that will be finished and sent off today - we'll see.
Rachel has been spending mornings and afternoons at the hospital each day and we have been going back after dinner once the nurses change shifts. Last night we left in the afternoon and stayed home to get some rest. It feels bad not spending all of our time with them, but we are both so worn out that we needed to eat dinner, take care of a few things around the house, and get in bed around 7:30pm to catch up on some sleep. It's not worth getting sick, because then we would not be able to see the boys for days...
I'm feeling a little better rested today and should help my head stay clear as I'm finishing forms for insurance, birth certificates, social security, and Rachel's short-term disability coverage. Hopefully most of that will be finished and sent off today - we'll see.
Sunday, October 4, 2009
Holding Jackson
When the boys got transferred from Baptist to Children's, they initially put the boys on warmers. The warmers are open and easier for the nurses/doctors to assess and do procedures on. Most new admissions get on these until they are settled in. Because the boys are so small they have a hard time regulating their temps so they place cling wrap over them to help keep the heat close to their body.
Here is Luke under the cling wrap:
On Thursday, Jack was doing good and they wanted to put him back into the isolette (his pod :)). The doctor said I could hold him while they got his new bed ready and his things moved over. It was also a trial to see if we could continue to hold him and do kangaroo care (skin-to-skin). Jack did great and they said we could continue to do it as long as he was doing okay with it. I got to hold him for an hour and it was wonderful. I loved feeling his little body squirm and liked to hear his little squeaks around his breathing tube. I did not want to give him back. I also got to hold him on Friday! It was a little nerve racking because I did not want to move much because of his breathing tube. I was afraid that it might come out but it didn't and he did great during our cuddle time.
Me holding Jack:
The next morning (Saturday), Ken and I showed up and got a wonderful surprise--the doctors had REMOVED HIS BREATHING TUBE!!! He was breathing on his own and doing great. He is on oxygen on a nasal cannula and looked great. The doctor was going to start feeding him later that day. Ken demanded that he got to hold his son on the weekend and I graciously agreed and let him have the weekend holding.
Daddy and Son:
Luke is doing great too. I want to hold him too but he still is too sick to do that but he is improving everyday. Saturday the doctors were able to wean his nitric and his oxygen. They even decreased his vent setting more and Luke is doing great. He is down to 30-40% oxygen which is much better than the 100% he was on. They have been able to wean some of his other medications related to his lungs and heart. Saturday he got his new PICC line and today he got his arterial line. The nurse will be taking out his umbilical line later this afternoon. The doctor and nurse practitioner have said how good both of the boys are doing and are pleased the way Luke is responding to his medications. Luke will have another echocardiogram tomorrow to see how his heart looks. This echo will determine how much and how aggressive they can wean his medications and ventilator settings. Pray that his heart looks better and the pulmonary hypertension is resolving! Luke is a little fighter and all the nurses and the doctor have said they are amazed how much he moves and how strong he is! I pray that he keeps fighting and shows everyone how strong he can be!
Luke in his isolette and the iv pumps with all his medications:
Luke all cozy and resting:
Here are some pictures of when the transport team came and picked up the boys:
Some pictures of Jack and Luke:
Ken took each boy a toy--Jack got a pumpkin and Luke got a Carolina Panthers football. Jack got a razorback from Granddad Elms. I will get a picture of that soon:
Here is Luke under the cling wrap:
On Thursday, Jack was doing good and they wanted to put him back into the isolette (his pod :)). The doctor said I could hold him while they got his new bed ready and his things moved over. It was also a trial to see if we could continue to hold him and do kangaroo care (skin-to-skin). Jack did great and they said we could continue to do it as long as he was doing okay with it. I got to hold him for an hour and it was wonderful. I loved feeling his little body squirm and liked to hear his little squeaks around his breathing tube. I did not want to give him back. I also got to hold him on Friday! It was a little nerve racking because I did not want to move much because of his breathing tube. I was afraid that it might come out but it didn't and he did great during our cuddle time.
Me holding Jack:
The next morning (Saturday), Ken and I showed up and got a wonderful surprise--the doctors had REMOVED HIS BREATHING TUBE!!! He was breathing on his own and doing great. He is on oxygen on a nasal cannula and looked great. The doctor was going to start feeding him later that day. Ken demanded that he got to hold his son on the weekend and I graciously agreed and let him have the weekend holding.
Daddy and Son:
Luke is doing great too. I want to hold him too but he still is too sick to do that but he is improving everyday. Saturday the doctors were able to wean his nitric and his oxygen. They even decreased his vent setting more and Luke is doing great. He is down to 30-40% oxygen which is much better than the 100% he was on. They have been able to wean some of his other medications related to his lungs and heart. Saturday he got his new PICC line and today he got his arterial line. The nurse will be taking out his umbilical line later this afternoon. The doctor and nurse practitioner have said how good both of the boys are doing and are pleased the way Luke is responding to his medications. Luke will have another echocardiogram tomorrow to see how his heart looks. This echo will determine how much and how aggressive they can wean his medications and ventilator settings. Pray that his heart looks better and the pulmonary hypertension is resolving! Luke is a little fighter and all the nurses and the doctor have said they are amazed how much he moves and how strong he is! I pray that he keeps fighting and shows everyone how strong he can be!
Luke in his isolette and the iv pumps with all his medications:
Luke all cozy and resting:
Here are some pictures of when the transport team came and picked up the boys:
Some pictures of Jack and Luke:
Ken took each boy a toy--Jack got a pumpkin and Luke got a Carolina Panthers football. Jack got a razorback from Granddad Elms. I will get a picture of that soon:
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