Jack-- only getting oxygen when he is eating. He is taking 4 bottles a day and doing good. He is usually eating most of his bottles. We had to experiment with different nipple and feeding positions but he is getting better everyday with his eating.
Luke---the doctors changed his vent the other day to a servo vent. This vent is more of a weaning vent and he will come off this vent. His nitric is being weaned and should be done tomorrow evening. He will have an echocardiogram tomorrow to make sure that his pulmonary hypertension is stable. He is doing good on feeds and doesn't even have an IV!
Will post more later! Thanks for the prayers!
- Posted using BlogPress from my iPhone
Thursday, November 12, 2009
Sunday, November 8, 2009
Quick update before bed
Jack is off his oxygen!! He was doing really good when we were there this afternoon. From the bottle he took 34ml out of the 38ml he gets with each feeding! Pretty soon he will be taking it all and he will get to start taking more bottles. Right now he only gets 2 bottles a day but if he keeps eating well then he will get a bottle added as he tolerates it. Luke is great. Ken got to hold him twice this weekend--one time with Jack and Luke together! It is an odd sensation to be able to carry Jack and walk around with him not attached to something! I felt like I was breaking the rules when I carried him over to see brother!! Luke is up to 5mls of feeding and the doctors are weaning his vent settings. They have said that if Luke keeps progressing and doesn't have anymore set backs then they may be able to get him off the vent in a couple weeks!! Jack hit the 4lb mark last night weighing in at 4lbs 3oz! He is growing fast.
Off to bed...........tomorrow is a busy day of cleaning, shopping, and seeing the boys!
Off to bed...........tomorrow is a busy day of cleaning, shopping, and seeing the boys!
Friday, November 6, 2009
Busy week
Sorry that it has been a while but it has been a busy week. The boys are doing great and getting better each day.
Luke has been doing great and the doctors are SLOWLY weaning his vent settings. He is up to 4 ml of breast milk an hour through his feeding tube. Today he was down to 28% oxygen and still on 10 of nitric. The doctors started him on Viagra yesterday. Yes I said Viagra!!! They have found that Viagra helps with pulmonary hypertension and has been used for that on babies for many years. Luke will have another echocardiogram on Monday and if his pulmonary hypertension is stable then they will start weaning his nitric. Praying that the Sildenafil (Viagra) will work and Luke can wean off his nitric. Luke has been a WILD man lately. He has always been feisty but now that he is feeling better he is all over the place. While it is good that he is feeling better, he was so wild the other night that his breathing tube came out! He got a new breathing tube and extra sedation and was great the rest of the night. Ken and I are getting to hold him once a day!! Ken held Luke for the first time on his birthday. Happy 30th Birthday!! I love you Ken!! Luke has his eye exam and it was pretty good. His eyes are still pretty immature and the doctors will recheck him in a week. Hopefully with the increased nutrition everything will get better and healthier--including his eyes. Luke is around 2lbs 8oz!
Luke's mad face:
Jack is doing great. The other day Ken and I were talking to the APN and she started asking us if we had car seats, bassinet, and also mentioned trying to find a pediatrician. She then said "The reason I am asking these questions is because Jack will probably be coming home in about 2 weeks!!!" He is currently on 1/2 liters of oxygen, in a little baby bed (out of the isolette) and getting his tube feedings over 30 minutes. He started taking a bottle yesterday and is doing good. He is still learning how to suck and swallow. He is taking about 15ml of his 35 ml feed. He only gets to take a bottle twice a day. Once he starts taking over 26 ml with every feed they will increase the number of bottles he can take. He had his eye exam and it was very good and normal. He also had his hearing screen and passed 3 out of 4 tests. They will come recheck it when he is off oxygen because it interferes with the one test he didn't pass. He is getting so big too. He is very close to 4lbs!!
Jack's First Bottle and his new bed:
Today I was holding Luke and Nurse Lindsey went and got Jack. I got to hold both my boys together for the first time!! It was a little hard because you can't really move much when holding Luke due to his breathing tubes but it was great to have them both in my arms. It is also the first time since they were born that they have been together. We gave Luke a pep talk and told him that we can do a whole lot more fun stuff if he just gets big and strong and keeps growing!!
Ken and I are trying to clean and get their room put together so it will be ready when Jack gets home. My dad has been refinishing the furniture for the boys room and it is almost done. He has done an AMAZING job and it looks great! I will have before and after pictures soon.
I know that I say this almost every time but THANKS to everyone who are praying for the boys. Your prayers are being heard and answered. We are thankful for everyday the boys are here and for their continued improvements. Pray that Luke continues to get bigger and healthier and that he has no more setbacks. Pray that Jack will get the hang of taking a bottle and he will be able to come off the oxygen soon. Pray for Ken and I that we remain healthy and for us to not get run down. Thank you!!
Luke has been doing great and the doctors are SLOWLY weaning his vent settings. He is up to 4 ml of breast milk an hour through his feeding tube. Today he was down to 28% oxygen and still on 10 of nitric. The doctors started him on Viagra yesterday. Yes I said Viagra!!! They have found that Viagra helps with pulmonary hypertension and has been used for that on babies for many years. Luke will have another echocardiogram on Monday and if his pulmonary hypertension is stable then they will start weaning his nitric. Praying that the Sildenafil (Viagra) will work and Luke can wean off his nitric. Luke has been a WILD man lately. He has always been feisty but now that he is feeling better he is all over the place. While it is good that he is feeling better, he was so wild the other night that his breathing tube came out! He got a new breathing tube and extra sedation and was great the rest of the night. Ken and I are getting to hold him once a day!! Ken held Luke for the first time on his birthday. Happy 30th Birthday!! I love you Ken!! Luke has his eye exam and it was pretty good. His eyes are still pretty immature and the doctors will recheck him in a week. Hopefully with the increased nutrition everything will get better and healthier--including his eyes. Luke is around 2lbs 8oz!
Luke's mad face:
Jack is doing great. The other day Ken and I were talking to the APN and she started asking us if we had car seats, bassinet, and also mentioned trying to find a pediatrician. She then said "The reason I am asking these questions is because Jack will probably be coming home in about 2 weeks!!!" He is currently on 1/2 liters of oxygen, in a little baby bed (out of the isolette) and getting his tube feedings over 30 minutes. He started taking a bottle yesterday and is doing good. He is still learning how to suck and swallow. He is taking about 15ml of his 35 ml feed. He only gets to take a bottle twice a day. Once he starts taking over 26 ml with every feed they will increase the number of bottles he can take. He had his eye exam and it was very good and normal. He also had his hearing screen and passed 3 out of 4 tests. They will come recheck it when he is off oxygen because it interferes with the one test he didn't pass. He is getting so big too. He is very close to 4lbs!!
Jack's First Bottle and his new bed:
Today I was holding Luke and Nurse Lindsey went and got Jack. I got to hold both my boys together for the first time!! It was a little hard because you can't really move much when holding Luke due to his breathing tubes but it was great to have them both in my arms. It is also the first time since they were born that they have been together. We gave Luke a pep talk and told him that we can do a whole lot more fun stuff if he just gets big and strong and keeps growing!!
Ken and I are trying to clean and get their room put together so it will be ready when Jack gets home. My dad has been refinishing the furniture for the boys room and it is almost done. He has done an AMAZING job and it looks great! I will have before and after pictures soon.
I know that I say this almost every time but THANKS to everyone who are praying for the boys. Your prayers are being heard and answered. We are thankful for everyday the boys are here and for their continued improvements. Pray that Luke continues to get bigger and healthier and that he has no more setbacks. Pray that Jack will get the hang of taking a bottle and he will be able to come off the oxygen soon. Pray for Ken and I that we remain healthy and for us to not get run down. Thank you!!
Sunday, November 1, 2009
Picture Time!!
Baby Shower Pictures
Monkeys on the Door and the table in the front entrance way and even monkeys on the chandelier:
A couple food pictures-notice the cute name tags for each item. The sweets table was gorgeous!
They had a necessity table packed with great things! A picture of the pile of presents and a picture of Ken and I in front of the main table:
3 generations of Barnes boys---Luke missed this picture but soon we will get one with him in it!!:
Luke was wide awake the other day and I got some good pictures of his sweet face:
These are the pictures that I took the day that Jack's feeding tube got changed from his mouth to his nose. We got some good pictures of him without tape on his face.
"Look mom, no tube!!"--
Jack was worn out and not digging his picture being taken anymore:
Here is a good shot of his hair----BLOND OR RED??
Monkeys on the Door and the table in the front entrance way and even monkeys on the chandelier:
A couple food pictures-notice the cute name tags for each item. The sweets table was gorgeous!
They had a necessity table packed with great things! A picture of the pile of presents and a picture of Ken and I in front of the main table:
3 generations of Barnes boys---Luke missed this picture but soon we will get one with him in it!!:
Luke was wide awake the other day and I got some good pictures of his sweet face:
These are the pictures that I took the day that Jack's feeding tube got changed from his mouth to his nose. We got some good pictures of him without tape on his face.
"Look mom, no tube!!"--
Jack was worn out and not digging his picture being taken anymore:
Here is a good shot of his hair----BLOND OR RED??
Thursday, October 29, 2009
Another Rainy day
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!
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!
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.
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