Rachel and Jack
Rachel and Luke
Jack's visit from Santa
Ross and his Christmas shirt (my favorite, Yoda is)
Even Eli got a Star Wars shirt for Christmas
Saturday, December 26, 2009
Some Christmas Pictures
Rachel and Jack
Rachel and Luke
Jack's visit from Santa
Ross and his Christmas shirt (my favorite, Yoda is)
Even Eli got a Star Wars shirt for Christmas
First Christmas For The Boys
It was a very different Christmas this year. Jack has been home for five weeks and is doing great. Still on oxygen and his pulse/ox monitor, but he hasn't really needed them for a while (his heart rate and pulse are normal all the time) and hopefully when we see the NICU doctor for an appointment at the hospital's high-risk newborn clinic in two weeks we can get rid of his wires for good.
We tried to get Jack and Luke together on Christmas Eve so the four of us could get a family picture together for our first Christmas, but it did not happen. Our request to bring Jack was officially denied around two weeks ago, but that was not going to stop us from trying. We brought Jack with us to see if we could get him back to see his brother. In over three months, they have been together less then three hours (when Rachel and I were able to hold them together a few times before Jack came home). The nurse told us he could not go back, so we just stayed there and waited. The nurse practitioner told us the same thing and we waited again. The NICU doctor agreed and Rachel and I took turns spending a few minutes with Luke and telling him that we tried to bring his brother back.
Grandma and Grandpa Barnes (Ken's parents) arrived Christmas Eve and will be here until January 2nd. On Christmas Eve we had a family dinner, went to church, and then to Rachel's parents' house for presents. Santa made a surprise visit and had gifts for Jack and his cousins Ross and Eli. Christmas morning Santa spent the day at Children's Hospital visiting all the patients, so at least both boys were able to get pictures with Santa for their first Christmas...
Luke is doing OK - just taking a long time to put on weight. His major health issues are behind him, but he is having a lot of reflux and having trouble keeping all his food down. He is in a crib now and is laying on a wedge - strapped in with velcro to hold him in since his position is almost sitting straight up. He still has not been able to start trying bottles, and it looks like it will be at least the end of January before he comes home. Rachel told Luke his goal was to get to 4 pounds by Christmas, and on Christmas morning he did it!
We tried to get Jack and Luke together on Christmas Eve so the four of us could get a family picture together for our first Christmas, but it did not happen. Our request to bring Jack was officially denied around two weeks ago, but that was not going to stop us from trying. We brought Jack with us to see if we could get him back to see his brother. In over three months, they have been together less then three hours (when Rachel and I were able to hold them together a few times before Jack came home). The nurse told us he could not go back, so we just stayed there and waited. The nurse practitioner told us the same thing and we waited again. The NICU doctor agreed and Rachel and I took turns spending a few minutes with Luke and telling him that we tried to bring his brother back.
Grandma and Grandpa Barnes (Ken's parents) arrived Christmas Eve and will be here until January 2nd. On Christmas Eve we had a family dinner, went to church, and then to Rachel's parents' house for presents. Santa made a surprise visit and had gifts for Jack and his cousins Ross and Eli. Christmas morning Santa spent the day at Children's Hospital visiting all the patients, so at least both boys were able to get pictures with Santa for their first Christmas...
Luke is doing OK - just taking a long time to put on weight. His major health issues are behind him, but he is having a lot of reflux and having trouble keeping all his food down. He is in a crib now and is laying on a wedge - strapped in with velcro to hold him in since his position is almost sitting straight up. He still has not been able to start trying bottles, and it looks like it will be at least the end of January before he comes home. Rachel told Luke his goal was to get to 4 pounds by Christmas, and on Christmas morning he did it!
Sunday, December 13, 2009
Quick pictures!
Boys doing great. Luke still needs to grow and tolerating a more normal feeding schedule. They are bolus feeding him in his feeding tube and he is doing okay-- just having some reflux. Will update more when I have a little more time!!
Luke:
Jack:
Posted using BlogPress from my iPhone
Friday, December 4, 2009
Another Busy week!
Again sorry that is has taken so long to update the blog. We are trying to settle into a routine with Jack! We had an eye appointment on Wed and everything looked good. We will go back every 2 weeks until his eyes are fully developed. I am not looking forward to those appointments. We were there 2 1/2 hours and Jack was with the doctor less than 5 minutes. It was a lot of waiting. The worst part was that they take your baby away from you to go see the doctor and won't let you go back with them!! Next time we might insist that we go back. It makes me uncomfortable to let Jack go off out of my sight with a stranger--even a nurse. Jack is doing great at home. He is eating a lot and sleeping great! Most nights he settles right down after eating and doesn't keep us up. One night he decided it was awake time and kept me up from 1am until 4am. Ken slept through all that! Ken has been a great help. He will usually get up and do one of Jacks night feeding to help out. I really appreciate it because that is a little more that I get to sleep. Jack is still on 1/8 of a liter of oxygen and doing fine on it. It has been a little difficult trying to carry him around the house because we have to drag his oxygen tubing and monitor with him but it is not too bad. His oxygen tank sits in our guest bathroom and he has a 50ft tubing extension! I will have to get a picture of the tank--it is enormous. I think the hardest part of Jack being home is the lack of freedom to just get up and go do something! He isn't going anywhere public until March or April (until the flu/RSV season is over) so that limits where we can go together to doctors appointments and grandparents house. I have to coordinate everything I want to do with finding someone to watch Jack. Need to go grocery shopping? Wait until Ken is off so I can go then. Go see Luke? Have to get a baby sitter or wait until someone can come watch Jack. The other hamper to some freedom is that it is a little harder to get him ready to go places because we have to get his portable oxygen tank filled and get all his equipment together. Don't take all that as complaining because I am thrilled to have Jack home and giving up a little freedom is wonderful because HE IS HOME!! I want to hold him and love on him all day. It seems that very little is getting done around the house because we just want to snuggle with him!
Luke is doing great. He is a wild man that the nurses can not keep still. Yesterday the nurse told me that she had to reposition him over 8 times and she doesn't know how he gets himself to some of the places she finds him! She said they had him in his snuggler--it has straps that keeps them contained since he can't be swaddled yet--and somehow he even manages to move himself around and gets out of it. Even more funny is that sometime he takes the whole thing with him when he is wiggling around. She has never seen a baby do that before. The nurse said she would get him repositioned and snuggled in and he will go to sleep and she will go do something with her other patient. She says she thinks he is still asleep because she hasn't heard him cry or his monitors go off and she will peek in at him and he will be all the way down at the foot of the isolette! Luke is still on 2 1/2 liters of oxygen and getting feeds into his stomach. The doctors really want Luke to grow so they increased the calories in the breast milk with human milk fortifier to 26calories per ounce. He is currently getting 9ml continuously for 11 hours and off one hour. Today speech therapy is going to try a bottle with him and see how he does! The doctors are not in a rush to get him taking bottles because they do not want him to burn calories eating because he is having trouble gaining weight. I personally think that Luke is just so wild that he is burning up all his calories moving around. I think when he is big enough to hold his own body temp up and can start wearing clothes and being swaddled--that will help. If we swaddle him tight enough he won't be able to move much! Last weight was 3lb 3oz!
Prayer requests:
Luke--that he will start gaining weight. Pretty much that is all we are waiting on for him to get closer to go home. He has to start gaining consistently and then they will try to start transitioning him for tube feedings to bottles.
Jack--that he stays healthy, continues to grow, and can get off his oxygen soon!
Ken and I--that we stay healthy, that we can rest whenever possible, I am going back to work next week so please pray that it is an easy transition for us!
For my family--my grandfather passed away on Wed. He was going to be 90 this weekend! His funeral is on Monday.
Thanks to everyone that has brought us meal. We really appreciate it and it has made it a little easier! Thanks to everyone who is still praying for us and our little men!!
--R
Luke is doing great. He is a wild man that the nurses can not keep still. Yesterday the nurse told me that she had to reposition him over 8 times and she doesn't know how he gets himself to some of the places she finds him! She said they had him in his snuggler--it has straps that keeps them contained since he can't be swaddled yet--and somehow he even manages to move himself around and gets out of it. Even more funny is that sometime he takes the whole thing with him when he is wiggling around. She has never seen a baby do that before. The nurse said she would get him repositioned and snuggled in and he will go to sleep and she will go do something with her other patient. She says she thinks he is still asleep because she hasn't heard him cry or his monitors go off and she will peek in at him and he will be all the way down at the foot of the isolette! Luke is still on 2 1/2 liters of oxygen and getting feeds into his stomach. The doctors really want Luke to grow so they increased the calories in the breast milk with human milk fortifier to 26calories per ounce. He is currently getting 9ml continuously for 11 hours and off one hour. Today speech therapy is going to try a bottle with him and see how he does! The doctors are not in a rush to get him taking bottles because they do not want him to burn calories eating because he is having trouble gaining weight. I personally think that Luke is just so wild that he is burning up all his calories moving around. I think when he is big enough to hold his own body temp up and can start wearing clothes and being swaddled--that will help. If we swaddle him tight enough he won't be able to move much! Last weight was 3lb 3oz!
Prayer requests:
Luke--that he will start gaining weight. Pretty much that is all we are waiting on for him to get closer to go home. He has to start gaining consistently and then they will try to start transitioning him for tube feedings to bottles.
Jack--that he stays healthy, continues to grow, and can get off his oxygen soon!
Ken and I--that we stay healthy, that we can rest whenever possible, I am going back to work next week so please pray that it is an easy transition for us!
For my family--my grandfather passed away on Wed. He was going to be 90 this weekend! His funeral is on Monday.
Thanks to everyone that has brought us meal. We really appreciate it and it has made it a little easier! Thanks to everyone who is still praying for us and our little men!!
--R
Thursday, November 26, 2009
So much to be thankful for
So Thanksgiving is here and this year it means a lot more than any years past. It's always been a great day to relax, spend time with family, eat, watch the annual football games in Dallas and Detroit, eat a little more, and somewhere find a minute or two to thank God for all that I have and all that He's done. This year has been a whirlwind of ups and downs - things are different now and I finally realize how much I have to be thankful for.
A year ago we decided to start getting our spare bedroom ready for a baby. We had been trying for almost a year and stepped out in faith, trusting that God would answer our prayers and give us a child. Two months later we were pregnant with not one, but two baby boys. I am so thankful for Rachel - she did so well throughout the pregnancy. Although she did not make it full term, it was easier for me than I thought it would be and she actually was disappointed by missing out on getting bigger, going into labor and having a normal "real" delivery.
I'm so thankful that God was with us to ease the stress and worry of the boys' complications. He provided thousands around the country and the world to pray for us. Jack and Luke were born at 28 weeks on September 23rd. Luke had been smaller than Jack all along, but had stopped growing at 24 weeks. The decision was a hard one to make, but I am so thankful that they both made it and that Jack is home to celebrate with us today! Luke has had a very rough time with many breathing and lung problems. There were many days that could have been his last, but God's hand has been on him and everyone's prayers have really helped. He is now breathing on his own and expect to have him some sometime in January.
We could not have made it without the help of our parents. They have made us meals, helped around the house, traveled to see the boys, refinished furniture for the boys' room, and have already spoiled them with many of the necessities they'll need.
Thanks so much to everyone who has helped us, prayed for us and have kept up to date with the boys. It has been a long and never-ending roller coaster ride, but a great one and something I would never give back.
A year ago we decided to start getting our spare bedroom ready for a baby. We had been trying for almost a year and stepped out in faith, trusting that God would answer our prayers and give us a child. Two months later we were pregnant with not one, but two baby boys. I am so thankful for Rachel - she did so well throughout the pregnancy. Although she did not make it full term, it was easier for me than I thought it would be and she actually was disappointed by missing out on getting bigger, going into labor and having a normal "real" delivery.
I'm so thankful that God was with us to ease the stress and worry of the boys' complications. He provided thousands around the country and the world to pray for us. Jack and Luke were born at 28 weeks on September 23rd. Luke had been smaller than Jack all along, but had stopped growing at 24 weeks. The decision was a hard one to make, but I am so thankful that they both made it and that Jack is home to celebrate with us today! Luke has had a very rough time with many breathing and lung problems. There were many days that could have been his last, but God's hand has been on him and everyone's prayers have really helped. He is now breathing on his own and expect to have him some sometime in January.
We could not have made it without the help of our parents. They have made us meals, helped around the house, traveled to see the boys, refinished furniture for the boys' room, and have already spoiled them with many of the necessities they'll need.
Thanks so much to everyone who has helped us, prayed for us and have kept up to date with the boys. It has been a long and never-ending roller coaster ride, but a great one and something I would never give back.
Saturday, November 21, 2009
picture of Luke
I forgot to post this picture of Luke without his breathing tube! It is blurry but it is the best picture I have right now. I will try to get more later.
A couple more pictures of Jack:
A couple more pictures of Jack:
Exciting week!
Bath Time:
Daddy Feeding Jack:
The room we stayed in at Children's:
This week has been full of excitement! Jack came home on Thursday afternoon and it has been great. The first day it was a little unreal. I would walk by the pack and play and it almost surprised me that there was a baby in it. Jack is such a sweet baby. He doesn't cry- just squeals every once in a while. He eats great and sleeps even better. Last night was the first time he woke up before his feeding time and asked to be fed. He was awake at 1:45 and feeding time is at 2. After he ate, Jack was back to sleep! He had his first bath at home today and now he smells like a sweet baby boy! I love baby smell! Lily doesn't really pay much attention to Jack. She only smells him every once in a while and then loses interest. Snuggling is so nice but sleep deprivation is not!
Last night around 3:30 we got a call from James (Luke's buddy/nurse) saying that Luke pulled his breathing tube partially out! James told me that he did okay and that the doctors wanted to try him off the ventilator!! He was on 3liters of oxygen and doing good! They did a blood gas once he had been off the vent for a while and it was still good! Mom came and watched Jack today while I went to go see Luke. Ken was working and I was anxious to go see him. He looked very good and was still doing good on the oxygen. I am so proud of my boys!
Prayer:
Luke--that he can continue to do good off the ventilator and doesn't get worn out! Also that he keeps progressing and can come home soon.
Jack--that he continues to grow and can get off the oxygen soon
Ken and I--that we can endure the sleep deprivation and remain healthy.
Going to test out our new camera and see how the video does online!
Daddy Feeding Jack:
The room we stayed in at Children's:
This week has been full of excitement! Jack came home on Thursday afternoon and it has been great. The first day it was a little unreal. I would walk by the pack and play and it almost surprised me that there was a baby in it. Jack is such a sweet baby. He doesn't cry- just squeals every once in a while. He eats great and sleeps even better. Last night was the first time he woke up before his feeding time and asked to be fed. He was awake at 1:45 and feeding time is at 2. After he ate, Jack was back to sleep! He had his first bath at home today and now he smells like a sweet baby boy! I love baby smell! Lily doesn't really pay much attention to Jack. She only smells him every once in a while and then loses interest. Snuggling is so nice but sleep deprivation is not!
Last night around 3:30 we got a call from James (Luke's buddy/nurse) saying that Luke pulled his breathing tube partially out! James told me that he did okay and that the doctors wanted to try him off the ventilator!! He was on 3liters of oxygen and doing good! They did a blood gas once he had been off the vent for a while and it was still good! Mom came and watched Jack today while I went to go see Luke. Ken was working and I was anxious to go see him. He looked very good and was still doing good on the oxygen. I am so proud of my boys!
Prayer:
Luke--that he can continue to do good off the ventilator and doesn't get worn out! Also that he keeps progressing and can come home soon.
Jack--that he continues to grow and can get off the oxygen soon
Ken and I--that we can endure the sleep deprivation and remain healthy.
Going to test out our new camera and see how the video does online!
Thursday, November 19, 2009
Wednesday, November 18, 2009
Jack's last night at Children's
We are spending the night at Children's for Jack's last night at the hospital. He is medically ready to be home and we are used to taking care of him - they just want parents to have at least one night to completely take care of the baby before sending it home. He is doing great and besides feeding him every 3 hours, it should be an easy night.
This morning Jack's oxygen equipment and pulse/ox monitor were delivered and we learned how to use everything. He will have his oxygen tube around his face for a while, and the pulse/ox monitor will let us know if he has any problems with heart rate or pulse. It will be a little frustrating, but will make us comfortable having him home without worrying about checking on him all the time.
Jack passed his car seat test without any problems. He had to stay in his carseat for 90 minutes to make sure he can tolerate the car ride home. We had to buy a smaller car seat today because our car seats are way too big for him right now. Hopefully by the time Luke comes home Jack will have grown into their matching car seats so that we won't have to buy another one.
Well, it's feeding time so we will finish up for the night. It will be great to have Jack home tomorrow!
This morning Jack's oxygen equipment and pulse/ox monitor were delivered and we learned how to use everything. He will have his oxygen tube around his face for a while, and the pulse/ox monitor will let us know if he has any problems with heart rate or pulse. It will be a little frustrating, but will make us comfortable having him home without worrying about checking on him all the time.
Jack passed his car seat test without any problems. He had to stay in his carseat for 90 minutes to make sure he can tolerate the car ride home. We had to buy a smaller car seat today because our car seats are way too big for him right now. Hopefully by the time Luke comes home Jack will have grown into their matching car seats so that we won't have to buy another one.
Well, it's feeding time so we will finish up for the night. It will be great to have Jack home tomorrow!
And So It Begins...
Life as we've known it is now over. The boys will be two months old next week and Jack is coming home tomorrow! Instead of going to bed early and enjoying our last quiet night, we rearranged everything in the living room and started moving extra things into the garage.
Jack will come home on oxygen, and that equipment is being delivered to the house today. We will stay at the hospital overnight in a private room to get one night of practice. If all goes well, we will bring him home sometime during the middle of the day tomorrow! The house is as ready as it needs to be and we have friends from church set to bring some meals over the next week. Ready or not, here he comes!
Luke continues to be OK with some ups and downs. We are excited to bring Jack home, but have to remember what they told us about Luke's progress - around 80% of the babies develop at Luke's speed, so he is very normal and Jack is the exception.
We will do our best to update when we can, but I expect they will be less frequent for a while. Thanks for keeping up with us and please sign up for email updates (at the top right of the page) so you never miss any news.
Jack will come home on oxygen, and that equipment is being delivered to the house today. We will stay at the hospital overnight in a private room to get one night of practice. If all goes well, we will bring him home sometime during the middle of the day tomorrow! The house is as ready as it needs to be and we have friends from church set to bring some meals over the next week. Ready or not, here he comes!
Luke continues to be OK with some ups and downs. We are excited to bring Jack home, but have to remember what they told us about Luke's progress - around 80% of the babies develop at Luke's speed, so he is very normal and Jack is the exception.
We will do our best to update when we can, but I expect they will be less frequent for a while. Thanks for keeping up with us and please sign up for email updates (at the top right of the page) so you never miss any news.
Monday, November 16, 2009
Nesting
I have been nesting! Cleaning and organizing and driving Ken crazy!! If everything goes as planned Jack is supposed to come home on Thursday!! I am very excited and scared and everything in between!! Jack will be coming home on oxygen (only 1/4 liter) and will need a machine to monitor his oxygen levels at home. Wednesday night Ken and I will spend the night at the hospital - they call it "rooming in." Jack will spend the night with us and we will be responsible for all his care and make sure we are comfortable with his oxygen and machines. Tomorrow I will take his car seat up the the hospital to get it approved. Jack will also do a car seat test. The nurses put the babies in their car seat and they stay in them as long as it takes to get home. The test is done to make sure the babies can tolerate being in the car seat. We only live 20 minutes away from the hospital so he should do good. Today he is taking all feeds by bottle and no tube feeds. He is doing a very good job eating and finishing most bottles in around 15 minutes. He is now weighing 4lbs and 9 oz!
Luke is doing good but he wasn't feeling too good today. He was very lethargic and was dropping his heart rate and oxygen levels. Usually when he drops his levels it is because he is mad and throwing a fit but today he was perfectly still and dropping them. His oxygen had to be turned up to 73% when I left today. They doctors changed some of his vent setting and rechecked a blood gas an hour later and it still was not very good. I am sure more vent setting changes are on the way. When I left Luke was acting a little better. He was peeking open his eyes and stirring more. His pulse ox was better too. Please pray that he was just having a bad day and that he is not backsliding and getting sick. He needs to continue to get bigger and stronger and be illness free. He is doing good on feeds. He is up to 7mls an hour through his feeding tube. He is still IV free!! He has been off his nitric since Friday and the echocardiogram was better on Friday! The eye doctors came last week and his eyes were much better!! His eyes were right where they should be for his age.
Yesterday my mom and dad brought over the boys' baby furniture and got the room arranged. The dressers were my grandfathers and when he died we took them. They were pretty beaten up so we decided to refinish them. They came out amazing!! Ken and I got the beginning sanding done but my wonderful dad did the rest. He is so handy and does very good work. We finished the dressers in a dark cherry finish to match the cribs. I will post some pictures soon. I have been majorly nesting the past couple days. There is so much to do! We got a new vacuum cleaner the other day and I am disgusted at how much our other vacuum did not clean! Just our bedroom filled the whole compartment with carpet lint, hair, and dust. GROSS. I washed our curtains and as I was transferring them into the dryer I noticed the tag that said "Professional Dry Cleaning Only." Oops! But they don't look too bad. We put a pack and play up in the living room. That was a very frustrating thing to do. It took us about 45 minutes to get all the accessories on it but it looks good now and shouldn't fall apart the first time we use it. I am pretty sure we put it up right!
I am ready to get Jack home but it will be really hard to leave Luke behind. I am comforted that he has AMAZING WONDERFUL nurses taking care of him--especially his primary nurses Lindsey and James! I wish they were there 7 days a week! I know that he is in good hands but it will be hard not to be able to go see him anytime. I will have to wait until someone can watch Jack so I can run up to see Luke. I thought I was tired and busy now!
Thanks for the prayers and thank you for those who are bringing us meals. I really feel so undeserving of such love and thoughtfulness! We had meals after the babies were born and now we are blessed with people bringing us meals again. Thank you so much for your generosity. We are so lucky and grateful to belong to a church that is more concerned about others over themselves! I can not wait to show someone the same kind of love and generosity and concern that our friends and church family have bestowed on us. Thank you for being an example of God's love to our family.
Prayer requests:
Luke feeling better and not getting sick. Some of his electrolytes and blood gasses are out of balance so those need to correct themselves. That his lungs get better and he is strong enough to come off the ventilator soon.
Jack coming home and that Ken and I can take adequate care of him! Jack not getting sick when he encounters the real world and keeps eating well and growing.
Ken and I staying healthy and getting enough rest (I know that resting is pushing it!!) and we figure out our job situations and budget issues!
Luke is doing good but he wasn't feeling too good today. He was very lethargic and was dropping his heart rate and oxygen levels. Usually when he drops his levels it is because he is mad and throwing a fit but today he was perfectly still and dropping them. His oxygen had to be turned up to 73% when I left today. They doctors changed some of his vent setting and rechecked a blood gas an hour later and it still was not very good. I am sure more vent setting changes are on the way. When I left Luke was acting a little better. He was peeking open his eyes and stirring more. His pulse ox was better too. Please pray that he was just having a bad day and that he is not backsliding and getting sick. He needs to continue to get bigger and stronger and be illness free. He is doing good on feeds. He is up to 7mls an hour through his feeding tube. He is still IV free!! He has been off his nitric since Friday and the echocardiogram was better on Friday! The eye doctors came last week and his eyes were much better!! His eyes were right where they should be for his age.
Yesterday my mom and dad brought over the boys' baby furniture and got the room arranged. The dressers were my grandfathers and when he died we took them. They were pretty beaten up so we decided to refinish them. They came out amazing!! Ken and I got the beginning sanding done but my wonderful dad did the rest. He is so handy and does very good work. We finished the dressers in a dark cherry finish to match the cribs. I will post some pictures soon. I have been majorly nesting the past couple days. There is so much to do! We got a new vacuum cleaner the other day and I am disgusted at how much our other vacuum did not clean! Just our bedroom filled the whole compartment with carpet lint, hair, and dust. GROSS. I washed our curtains and as I was transferring them into the dryer I noticed the tag that said "Professional Dry Cleaning Only." Oops! But they don't look too bad. We put a pack and play up in the living room. That was a very frustrating thing to do. It took us about 45 minutes to get all the accessories on it but it looks good now and shouldn't fall apart the first time we use it. I am pretty sure we put it up right!
I am ready to get Jack home but it will be really hard to leave Luke behind. I am comforted that he has AMAZING WONDERFUL nurses taking care of him--especially his primary nurses Lindsey and James! I wish they were there 7 days a week! I know that he is in good hands but it will be hard not to be able to go see him anytime. I will have to wait until someone can watch Jack so I can run up to see Luke. I thought I was tired and busy now!
Thanks for the prayers and thank you for those who are bringing us meals. I really feel so undeserving of such love and thoughtfulness! We had meals after the babies were born and now we are blessed with people bringing us meals again. Thank you so much for your generosity. We are so lucky and grateful to belong to a church that is more concerned about others over themselves! I can not wait to show someone the same kind of love and generosity and concern that our friends and church family have bestowed on us. Thank you for being an example of God's love to our family.
Prayer requests:
Luke feeling better and not getting sick. Some of his electrolytes and blood gasses are out of balance so those need to correct themselves. That his lungs get better and he is strong enough to come off the ventilator soon.
Jack coming home and that Ken and I can take adequate care of him! Jack not getting sick when he encounters the real world and keeps eating well and growing.
Ken and I staying healthy and getting enough rest (I know that resting is pushing it!!) and we figure out our job situations and budget issues!
Thursday, November 12, 2009
Big Boys!
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
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
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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