It was another adventurous week for our family.
Ali took Brady to see Dr. Hess (the surgeon) on Monday. He said that the G-J tube looked good. He wanted Ali to make an appointment in 6 months to replace the tube with a larger one.
Ali took Brady to see Dr. Tim (our pediatrician) on Wednesday. He increased Brady's daily food intake from 760 ml per day to between 800 and 850 ml per day. Ali will schedule another appointment in two weeks for another checkup and some vaccinations.
On Tuesday night we noticed that Brady's wound seemed to have more fluid around it. On Wednesday morning there was a large bulge in his stomach near the tube. That area was also hard and red.
Dr. Tim took an X-ray of Brady's stomach. He said the feeding tube was kinked. It was going straight up into his stomach (causing the bulge, hardness and redness) and then looped back down into his stomach and intestine.
Dr. Tim called Dr. Hess and they agreed to leave it alone for one day to see if it straightened itself out. If it wasn't better on Thursday, Ali was to call Dr. Hess to have the tube replaced.
We noticed that Brady wasn't acting like himself. He was crying most of the day on Wednesday and seemed very uncomfortable whenever we moved him.
On Thursday, he seemed very lethargic and quiet. He was spitting up his feedings and his medicines. The area of his stomach was still swollen, hard and red.
Ali called Dr. Hess and they said they had an opening if she could make it to the hospital in 45 minutes.
Ali and I then went into scramble mode. Ali's mom took Casey to his ECFE class and made it home in time to get Ava off the bus. I needed to get my last two classes in school covered by other teachers. I was also supposed to be the only coach on a bus to Bloomington Jefferson for a track meet. After running around school for 15 minutes and getting everything covered, Ali met me at the high school, and we drove up to the hospital together.
Of course, we raced to the hospital to find out there was an emergency surgery in our time slot. We waited there for two hours before they had an opening for Brady.
Ali was able to be in the room during the procedure, but I was asked to wait outside (they only have room for one parent). Brady was on a large, moveable bed with an X-Ray machine. There were three television screens. Instead of moving cameras, they moved the bed to get the picture they wanted.
They didn't put Brady under for the procedure. They just used some cream on his stomach to help numb it.
They removed Brady's existing G-J tube. They then used the X-rays to help position the new tube. They turned on the X-rays periodically as they guided it into position. By turning the machine on and off, they are able to control the amount of radiation and keep Brady safe. Brady cried a little when they removed the tube and put the new tube in.
Ali remained at the head of the bed the entire time. She wore a lead vest, glasses and a thyroid guard to protect her from the radiation. She kept dipping Brady's pacifier in sugar water to keep him sedated.
They played a Baby Einstein video on an iPad for Brady. He was a little squirmy, but he did a great job for about 30 minutes on the table.
After the procedure, we went up to the 4th floor to visit with the social workers, nurses and therapists from the NICU. They were excited to see us and hold Brady. The OT did a quick evaluation of Brady and said he looks fantastic.
Brady slept almost the entire day on Friday. He was uncomfortable whenever we tried to feed him. It seemed like gas was causing him the pain.
By Saturday, Brady seemed to be back to normal. The highlight of this weekend was watching Brady starting to get a personality. He is smiling, cooing and really interacting with us. He was awake almost the entire day on Sunday and acting very much the same. It was a great ending to another eventful week.
The school district is coming to work with Brady on Tuesday. The home care nurse (Children's Hospital) is coming to work with Brady on Wednesday. Brady will start his treatment at Gillette Children's on May 22.
Please continue to pray for Brady's healing.
With love,
Tyler, Ali, Ava, Casey and Brady
Sunday, April 29, 2012
Sunday, April 22, 2012
Appointments
This was another very good week for Brady and our family. He continues to drink large amounts from bottles during the day. It seems like he is having less issues with reflux. He hardly arches and cries at all when he eats.
If anything, we're still working on pacing with him. He gets so excited to eat at times that he doesn't always stop to breathe. Ali and I need to tip his bottle or remove it from his mouth at times to help him stop, swallow and breathe. Once he settles down, he really is doing a good job of drinking entire bottles during every feeding.
We're still connecting him to the feeding equipment at night. A couple of nights we were able to eliminate the last four hours of feeding because he took so much during the day. It really has reduced the stress of giving him enough food during the day. I think we could probably give him the entire amount by bottle if we worked on it all day long. Because we're so active, it's nice to know that we have the evenings to feed him whatever we couldn't during the day.
The biggest change this week is that Brady is now sleeping through the entire night. We put him down around 8:30 p.m. and he will sleep until around 8:30 a.m. Ali still gets up every four hours to pump, and I'm still getting up every four hours to change the milk in his feeding bag. However, it's nice to not get up during the night and feed him a bottle.
This week we had several visitors to our house to see Brady. The school district sent out an early childhood special education teacher and an occupational therapist. They went over his birth history and did an observation of him. They were impressed with how alert he was, how he tracked with his eyes, how he followed voices. and how he could hold his head up on his own. They are going to work with Gillette Children's on his therapy plan. They will be coming back next week to work with Brady and Ali.
A nurse from Children's Hospital (not to be confused with U of M Children's or Gillette Children's) also visited on Tuesday. She also did an exam on Brady and asked Ali a number questions about Brady's development. She was also impressed with Brady's progress. She was a little concerned about Brady's lack of weight gain since he's left the hospital. She will also come back next week to begin treatment on Brady.
Ali has a meeting scheduled with Gillette Children's at the end of May. Instead of coming to our house, we will need to go to their clinic for Brady's treatment. We believe we'll be able to do everything at their location in Burnsville.
We feel very fortunate to have so many people working with Brady and Ali. We're hopeful that the preventative care will make a big difference in his development over the next couple of years.
Ali is bringing Brady back up to the U of M tomorrow to see the surgeon who inserted the G-J tube. They are going to check the incision and make sure everything is functioning properly.
Ali is also bringing Brady back to our pediatrician on Wednesday for a follow up appointment. We'll know more about Brady's weight gain and the feeding plan for him moving forward.
As you can tell, Ali has turned into a full-time secretary, chauffeur, therapist and cheerleader for Brady's recovery. There's still much work to be done. Keep those messages and prayers coming. :)
With love,
Tyler, Ali, Ava, Casey and Brady
If anything, we're still working on pacing with him. He gets so excited to eat at times that he doesn't always stop to breathe. Ali and I need to tip his bottle or remove it from his mouth at times to help him stop, swallow and breathe. Once he settles down, he really is doing a good job of drinking entire bottles during every feeding.
We're still connecting him to the feeding equipment at night. A couple of nights we were able to eliminate the last four hours of feeding because he took so much during the day. It really has reduced the stress of giving him enough food during the day. I think we could probably give him the entire amount by bottle if we worked on it all day long. Because we're so active, it's nice to know that we have the evenings to feed him whatever we couldn't during the day.
The biggest change this week is that Brady is now sleeping through the entire night. We put him down around 8:30 p.m. and he will sleep until around 8:30 a.m. Ali still gets up every four hours to pump, and I'm still getting up every four hours to change the milk in his feeding bag. However, it's nice to not get up during the night and feed him a bottle.
This week we had several visitors to our house to see Brady. The school district sent out an early childhood special education teacher and an occupational therapist. They went over his birth history and did an observation of him. They were impressed with how alert he was, how he tracked with his eyes, how he followed voices. and how he could hold his head up on his own. They are going to work with Gillette Children's on his therapy plan. They will be coming back next week to work with Brady and Ali.
A nurse from Children's Hospital (not to be confused with U of M Children's or Gillette Children's) also visited on Tuesday. She also did an exam on Brady and asked Ali a number questions about Brady's development. She was also impressed with Brady's progress. She was a little concerned about Brady's lack of weight gain since he's left the hospital. She will also come back next week to begin treatment on Brady.
Ali has a meeting scheduled with Gillette Children's at the end of May. Instead of coming to our house, we will need to go to their clinic for Brady's treatment. We believe we'll be able to do everything at their location in Burnsville.
We feel very fortunate to have so many people working with Brady and Ali. We're hopeful that the preventative care will make a big difference in his development over the next couple of years.
Ali is bringing Brady back up to the U of M tomorrow to see the surgeon who inserted the G-J tube. They are going to check the incision and make sure everything is functioning properly.
Ali is also bringing Brady back to our pediatrician on Wednesday for a follow up appointment. We'll know more about Brady's weight gain and the feeding plan for him moving forward.
As you can tell, Ali has turned into a full-time secretary, chauffeur, therapist and cheerleader for Brady's recovery. There's still much work to be done. Keep those messages and prayers coming. :)
With love,
Tyler, Ali, Ava, Casey and Brady
Saturday, April 14, 2012
New Routines
We've talked to several people who have told us they've missed the daily updates of Brady. We'll try to continue writing journal entries at least once a week or whenever any major changes or milestones occur.
The last week has been a blur, but we've also been able to settle into a sense of normalcy for our family. I went back to teaching, coaching track full time, and started a new quarter teaching online college classes. It's so nice to have the entire family in one location at night when the days are busy.
Ava went to school this week and has settled into her new role as big sister and helper. It's hard to keep her hands off of him. She loves to rub his head, give him kisses and hold him.
Ali saw Dr. Meshcke on Wednesday. The doctor said her wound is looking very good and gave her clearance to start exercising again. The nurses and doctors were all excited to see Ali, Casey and Brady.
Casey has settled back into his role as a momma's boy. He's surprisingly gentle and sweet around Brady. He asks to give him kisses and always comes to check whenever he's crying. He was excited to show off Brady to his classmates at ECFE on Thursday.
Brady saw his pediatrician on Wednesday. Dr. Tim said he was receiving updates about Brady since his birth and was excited to finally meet him. He was very impressed with his progress so far and didn't make any changes to his current treatment. He wants to see him again in two weeks.
I've been teaching for 15 years and I never knew that the local school district provides services for babies like Brady. Two people are coming to our house on Tuesday to do an evaluation of Brady and then develop a treatment plan they will do with Brady (and teach Ali) at our house.
A home care nurse will also be coming on Tuesday. They are providing all of our feeding equipment. We think they'll check on Brady, make sure we have enough supplies, and also ensure we're feeling good about everything.
Ali has been playing phone tag with the people at Gillette Children's Hospital. We will eventually have a doctor appointment with them to evaluate Brady and provide occupational therapy as needed.
Brady will also be returning to the U of M a couple of times in the next couple of weeks. The surgeon wants to check the progress of his G-J tube. They also want to do a follow up swallow study.
The biggest news over the past week is the Brady has really been eating well. The plan is to have him take 760 ml each day. We're supposed to feed him through his G-J tube 480 ml at night (12 hours of 40 ml) and then bottle feed him the rest during the day (280 ml).
Yesterday Brady took 540 ml by bottle and we were able to disconnect him from his feeding equipment four hours early. We're going to do the same tonight. In the hospital Brady was stuck around 40% of his consumption by bottle. The past couple of days he's been around 60-70% by bottle.
He's also had a couple of individual feedings over 110 ml, which was the goal amount we could never reach in the hospital. Ali and I are being careful not to push the feedings too much. We still want it to be enjoyable for Brady.
There still are some signs of reflux at times, but he's much more relaxed and comfortable when he eats. It seems like the reflux medicine is helping, and the thicker milk also is preventing aspiration. He does sometimes throw his food back up, but that seems to be improving as well.
Ali is still getting up every 3-4 hours to pump. We also need to wake up every four hours to refill the milk on Brady's pump. Brady has been sleeping very well. He usually falls asleep around 9:00 p.m. and will sleep until 4 or 5 in the morning. I usually feed him a bottle at that time and he'll fall back asleep until 9:00 a.m.
He has been very alert for large stretches during the day. He really enjoys looking at faces and is showing a lot of signs of normal behavior. He is moving his eyes and head to follow sounds and faces. His neck muscles are extremely strong and he really enjoys tummy time. He's starting to coo and make faces to communicate. He's also beginning to bring his hands to his face and grasp objects. All of those "normal" behaviors are wonderful to see, and we'll learn more about his development as we meet with occupational therapists in the next few weeks.
It's quite the ordeal to get Brady ready for bed. We need to clean his G-J wound, change his diaper and dress him, put splints on his hands, give him medicine through the J-tube, warm milk and fill up his feeding bag, prime the tubing, warm his bottle milk and add thickener, program his feeding pump, feed him his bottle (sit him up, tilt him down, burp, lift the chin, squeeze the cheeks, repeat), strap him into his Danny sling, etc. It's a process that takes Ali and me more than one half hour working together (and then we still have the other two other kids to put down).
At one point tonight Brady was on the changing table and crying. Ali was getting medicine ready, and I was mixing Brady's bottle. Ava was holding down the button to prime the feeding pump tubing. I looked over and Casey climbed up on the changing table and placed a pacifier into Brady's mouth to calm him down. It was such a cool moment to see the whole family working together for our newest addition.
We're so blessed to have Brady home, and we hope he continues to improve. We can't thank you enough for all of the messages and prayers.
With love,
Tyler, Ali, Ava, Casey and Brady
The last week has been a blur, but we've also been able to settle into a sense of normalcy for our family. I went back to teaching, coaching track full time, and started a new quarter teaching online college classes. It's so nice to have the entire family in one location at night when the days are busy.
Ava went to school this week and has settled into her new role as big sister and helper. It's hard to keep her hands off of him. She loves to rub his head, give him kisses and hold him.
Ali saw Dr. Meshcke on Wednesday. The doctor said her wound is looking very good and gave her clearance to start exercising again. The nurses and doctors were all excited to see Ali, Casey and Brady.
Casey has settled back into his role as a momma's boy. He's surprisingly gentle and sweet around Brady. He asks to give him kisses and always comes to check whenever he's crying. He was excited to show off Brady to his classmates at ECFE on Thursday.
Brady saw his pediatrician on Wednesday. Dr. Tim said he was receiving updates about Brady since his birth and was excited to finally meet him. He was very impressed with his progress so far and didn't make any changes to his current treatment. He wants to see him again in two weeks.
I've been teaching for 15 years and I never knew that the local school district provides services for babies like Brady. Two people are coming to our house on Tuesday to do an evaluation of Brady and then develop a treatment plan they will do with Brady (and teach Ali) at our house.
A home care nurse will also be coming on Tuesday. They are providing all of our feeding equipment. We think they'll check on Brady, make sure we have enough supplies, and also ensure we're feeling good about everything.
Ali has been playing phone tag with the people at Gillette Children's Hospital. We will eventually have a doctor appointment with them to evaluate Brady and provide occupational therapy as needed.
Brady will also be returning to the U of M a couple of times in the next couple of weeks. The surgeon wants to check the progress of his G-J tube. They also want to do a follow up swallow study.
The biggest news over the past week is the Brady has really been eating well. The plan is to have him take 760 ml each day. We're supposed to feed him through his G-J tube 480 ml at night (12 hours of 40 ml) and then bottle feed him the rest during the day (280 ml).
Yesterday Brady took 540 ml by bottle and we were able to disconnect him from his feeding equipment four hours early. We're going to do the same tonight. In the hospital Brady was stuck around 40% of his consumption by bottle. The past couple of days he's been around 60-70% by bottle.
He's also had a couple of individual feedings over 110 ml, which was the goal amount we could never reach in the hospital. Ali and I are being careful not to push the feedings too much. We still want it to be enjoyable for Brady.
There still are some signs of reflux at times, but he's much more relaxed and comfortable when he eats. It seems like the reflux medicine is helping, and the thicker milk also is preventing aspiration. He does sometimes throw his food back up, but that seems to be improving as well.
Ali is still getting up every 3-4 hours to pump. We also need to wake up every four hours to refill the milk on Brady's pump. Brady has been sleeping very well. He usually falls asleep around 9:00 p.m. and will sleep until 4 or 5 in the morning. I usually feed him a bottle at that time and he'll fall back asleep until 9:00 a.m.
He has been very alert for large stretches during the day. He really enjoys looking at faces and is showing a lot of signs of normal behavior. He is moving his eyes and head to follow sounds and faces. His neck muscles are extremely strong and he really enjoys tummy time. He's starting to coo and make faces to communicate. He's also beginning to bring his hands to his face and grasp objects. All of those "normal" behaviors are wonderful to see, and we'll learn more about his development as we meet with occupational therapists in the next few weeks.
It's quite the ordeal to get Brady ready for bed. We need to clean his G-J wound, change his diaper and dress him, put splints on his hands, give him medicine through the J-tube, warm milk and fill up his feeding bag, prime the tubing, warm his bottle milk and add thickener, program his feeding pump, feed him his bottle (sit him up, tilt him down, burp, lift the chin, squeeze the cheeks, repeat), strap him into his Danny sling, etc. It's a process that takes Ali and me more than one half hour working together (and then we still have the other two other kids to put down).
At one point tonight Brady was on the changing table and crying. Ali was getting medicine ready, and I was mixing Brady's bottle. Ava was holding down the button to prime the feeding pump tubing. I looked over and Casey climbed up on the changing table and placed a pacifier into Brady's mouth to calm him down. It was such a cool moment to see the whole family working together for our newest addition.
We're so blessed to have Brady home, and we hope he continues to improve. We can't thank you enough for all of the messages and prayers.
With love,
Tyler, Ali, Ava, Casey and Brady
Sunday, April 8, 2012
Saturday, April 7, 2012
Home Sweet Home
Last night the nurses backed off even more. We pretty much took care of everything on our own. We administered all of the medications. We set up the pump and fed Brady. We even modified the feeding amounts as the night progressed.
They want Brady to take 760 ml over the course of the day. We can give him 480 ml of that during the night through the J-tube (40 ml per hours for 12 hours). That leaves us with 280 ml we need to try to bottle feed him during the day. If he won't take that much, we can always bolus the amount through his G-tube. It's really a low-stress environment for feeding.
Brady took his full amount during the day. He also woke up a few times during the night and cried. We fed him a bottle during those times. We then started reducing the amounts he needed over the night (from 40 to 36 to 32 ml per hour). After Brady's last bottle feed during the night, we were able to disconnect him from the feeding machine completely one hour before we had planned.
We think this is how it will work while Brady is home. We'll continue to try to feed him as much as we can. If that volume increases, we'll be able to reduce the assistance in the evenings. Obviously the goal is to get him to 100% bottle feeding in the future.
We were in our room today when the doctors made their rounds. We ended up having the same neonatologist today who was at Fairview Ridges the night Brady was born. I still remember vividly having a conversation with him about an hour after Brady's birth and asking him if Brady was going to live.
Today, the doctor said he is amazed at Brady's progress. He said Brady has far exceeded his expectations of him at this point.
We still don't know what the future holds for Brady. We really won't know for several years as we wait for developmental milestones.
We will meet with our pediatrician next week and they will take over the care of Brady. Because of Brady's birth history, our school district will send someone to our home to do preventative occupational therapy. We will also be referred to Gillette Children's Hospital. We have learned that they are the best place around for working with children with brain injuries like Brady.
We were officially discharged from the hospital at 11:00 a.m. Ava and Casey were so excited to see their little brother. Casey ran cars and trucks all over his body. Ava just wanted to hold him and stroke his skin. Brady couldn't take his eyes off of both of them.
It was hard today to say goodbye to the doctors, nurses and therapists. We were so blessed to have such talented people care for our son.
We can't say enough about how much we appreciate what our parents have done for us over the past 39 days. They have basically dropped everything to become full-time parents again. Ava and Casey have treasured their time with the grandparents, and Ali and I are so thankful of the time we were able to spend at the hospital.
We also want to thank all of our family and friends for their continuous support and love. We truly have felt uplifted by all of the message and prayers. We know that Brady was surrounded by constant prayer. It continues to make him stronger every day.
It felt a little strange to pile three kids in the back of our vehicle. We went to the 4:00 Easter service at Hosanna! and then out to eat with family. We feel so blessed to have Brady home for Easter. It's going to be a fantastic weekend.
The last song at the service today was called "Beautiful Things". I was holding Brady in my arms and the music was perfect. Brady has been through so much pain, he is being made new, and it's a beautiful thing. Happy Easter!
With love,
Tyler, Ali, Ava, Casey and Brady
They want Brady to take 760 ml over the course of the day. We can give him 480 ml of that during the night through the J-tube (40 ml per hours for 12 hours). That leaves us with 280 ml we need to try to bottle feed him during the day. If he won't take that much, we can always bolus the amount through his G-tube. It's really a low-stress environment for feeding.
Brady took his full amount during the day. He also woke up a few times during the night and cried. We fed him a bottle during those times. We then started reducing the amounts he needed over the night (from 40 to 36 to 32 ml per hour). After Brady's last bottle feed during the night, we were able to disconnect him from the feeding machine completely one hour before we had planned.
We think this is how it will work while Brady is home. We'll continue to try to feed him as much as we can. If that volume increases, we'll be able to reduce the assistance in the evenings. Obviously the goal is to get him to 100% bottle feeding in the future.
We were in our room today when the doctors made their rounds. We ended up having the same neonatologist today who was at Fairview Ridges the night Brady was born. I still remember vividly having a conversation with him about an hour after Brady's birth and asking him if Brady was going to live.
Today, the doctor said he is amazed at Brady's progress. He said Brady has far exceeded his expectations of him at this point.
We still don't know what the future holds for Brady. We really won't know for several years as we wait for developmental milestones.
We will meet with our pediatrician next week and they will take over the care of Brady. Because of Brady's birth history, our school district will send someone to our home to do preventative occupational therapy. We will also be referred to Gillette Children's Hospital. We have learned that they are the best place around for working with children with brain injuries like Brady.
We were officially discharged from the hospital at 11:00 a.m. Ava and Casey were so excited to see their little brother. Casey ran cars and trucks all over his body. Ava just wanted to hold him and stroke his skin. Brady couldn't take his eyes off of both of them.
It was hard today to say goodbye to the doctors, nurses and therapists. We were so blessed to have such talented people care for our son.
We can't say enough about how much we appreciate what our parents have done for us over the past 39 days. They have basically dropped everything to become full-time parents again. Ava and Casey have treasured their time with the grandparents, and Ali and I are so thankful of the time we were able to spend at the hospital.
We also want to thank all of our family and friends for their continuous support and love. We truly have felt uplifted by all of the message and prayers. We know that Brady was surrounded by constant prayer. It continues to make him stronger every day.
It felt a little strange to pile three kids in the back of our vehicle. We went to the 4:00 Easter service at Hosanna! and then out to eat with family. We feel so blessed to have Brady home for Easter. It's going to be a fantastic weekend.
The last song at the service today was called "Beautiful Things". I was holding Brady in my arms and the music was perfect. Brady has been through so much pain, he is being made new, and it's a beautiful thing. Happy Easter!
With love,
Tyler, Ali, Ava, Casey and Brady
Friday, April 6, 2012
Slumber Party - Day 2
We didn't get a lot of sleep last night. Ali set the alarm every three hours to pump. Brady was on a different schedule every three hours to eat. The nurse also stopped in the room every four hours to get vitals and add milk to his pump. We figure that we slept for two or three hours. I guess the lack of sleep is good practice for when we go home.
We had a class at 9:00 a.m. to go over reflux, the Danny sling, and CPR. Ali remarked how weird it was to be giving chest compressions on a doll five weeks after watching Brady go through a resuscitation.
After rounds this morning they made some changes with Brady. They removed his heart monitor and pulse oximeter. For the past couple of days they've also given Brady constant food through his J-tube. They started at 7 ml per hour after the surgery, moved it to 20 ml after a couple of days, and he was at 35 ml per hour yesterday. Today they removed the constant feeding and wanted to us to move to cue based feedings.
This meant Brady was completely free of wires and tubes for the entire day. Ali and I held him and walked around the room. We also spent time together just lying down on the bed and snuggling.
Ali and I also did all of the care of Brady today with the guidance of the nursing staff. We changed his pump bag and tubing. We gave him his medicine through his J-tube. It was a day to practice priming tubes, using syringes, and changing settings on the pump.
For feeding today they wanted Brady to eat 280 ml by bottle from 8 a.m. to 8 p.m. Brady had 295 ml throughout the day (including a couple of big feeds around 70 ml). He really did a nice job with his pacing and his suck, swallow, and breathe.
They will also feed him 40 ml per hour over 12 hours at night, so he will take 480 ml from 8 p.m. to 8 a.m. This amount will be adjusted if he feeds during the night.
We'll learn more during rounds tomorrow, but it sounds like they will set a daily amount (it was 760 ml today). We will then try to get to a certain amount during the day by bottle (it was 280 today) and then use the tube to supplement the rest at night (at a maximum of 40 ml per hour). Ali and I will need to brush up on our math skills to make sure we're feeding him correctly.
About the only negative is that Brady does sometimes spit his milk back up. The nurses think this is caused by the reflux and should get better over time. His wound around the G-J tube also looks pretty raw. The nurses said this is also common and should heal over time.
At the end of the night a doctor came into the room to do a physical on Brady. She was very pleased with his development and muscle tone. The doctor told us they are planning on discharging us tomorrow morning after they do rounds. We're hoping to be home around lunch time.
It's hard to believe it's taken us 38 days to get to this point, and we know we still have a lot of work ahead of us. It's such a blessing to be able to start a new chapter tomorrow. We can't wait to see the faces of Ava and Casey when they see Brady tomorrow. Thanks again for all of your words of encouragement and prayers. It's going to be a very Happy Easter on Sunday!
With love,
Tyler, Ali, Ava, Casey and Brady
We had a class at 9:00 a.m. to go over reflux, the Danny sling, and CPR. Ali remarked how weird it was to be giving chest compressions on a doll five weeks after watching Brady go through a resuscitation.
After rounds this morning they made some changes with Brady. They removed his heart monitor and pulse oximeter. For the past couple of days they've also given Brady constant food through his J-tube. They started at 7 ml per hour after the surgery, moved it to 20 ml after a couple of days, and he was at 35 ml per hour yesterday. Today they removed the constant feeding and wanted to us to move to cue based feedings.
This meant Brady was completely free of wires and tubes for the entire day. Ali and I held him and walked around the room. We also spent time together just lying down on the bed and snuggling.
Ali and I also did all of the care of Brady today with the guidance of the nursing staff. We changed his pump bag and tubing. We gave him his medicine through his J-tube. It was a day to practice priming tubes, using syringes, and changing settings on the pump.
For feeding today they wanted Brady to eat 280 ml by bottle from 8 a.m. to 8 p.m. Brady had 295 ml throughout the day (including a couple of big feeds around 70 ml). He really did a nice job with his pacing and his suck, swallow, and breathe.
They will also feed him 40 ml per hour over 12 hours at night, so he will take 480 ml from 8 p.m. to 8 a.m. This amount will be adjusted if he feeds during the night.
We'll learn more during rounds tomorrow, but it sounds like they will set a daily amount (it was 760 ml today). We will then try to get to a certain amount during the day by bottle (it was 280 today) and then use the tube to supplement the rest at night (at a maximum of 40 ml per hour). Ali and I will need to brush up on our math skills to make sure we're feeding him correctly.
About the only negative is that Brady does sometimes spit his milk back up. The nurses think this is caused by the reflux and should get better over time. His wound around the G-J tube also looks pretty raw. The nurses said this is also common and should heal over time.
At the end of the night a doctor came into the room to do a physical on Brady. She was very pleased with his development and muscle tone. The doctor told us they are planning on discharging us tomorrow morning after they do rounds. We're hoping to be home around lunch time.
It's hard to believe it's taken us 38 days to get to this point, and we know we still have a lot of work ahead of us. It's such a blessing to be able to start a new chapter tomorrow. We can't wait to see the faces of Ava and Casey when they see Brady tomorrow. Thanks again for all of your words of encouragement and prayers. It's going to be a very Happy Easter on Sunday!
With love,
Tyler, Ali, Ava, Casey and Brady
Thursday, April 5, 2012
Slumber Party
Ali and I are sitting in a hospital room and Brady is sleeping in a crib next to us. He is connected to a pulse oximeter on his foot (oxygen levels in his blood) and three heart monitor leads on his chest. He also has a constant milk flow (35 ml per hour) from a feeding pump into his J-tube.
The hospital room is very nice. There is a double bed, a reclining chair, TV, bathroom, and a window view. Brady is still under the care of the nursing staff. They stop in every four hours or so to check vitals, add more milk to his feeding machine, give him medicine, etc.
Ali and I are learning how to care for Brady. We took a class at 4:00 that went over the G-J tube and the feeding pump. We learned how to work the devices, how to clean them, and some troubleshooting tips.
At 5:00 we met with a home care nurse. She gave us our feeding pump, tubing, syringes, backpack, and all of the accessories we need to feed Brady at home. We will have 24 hour phone support from their nursing staff if we need it.
Ali and I both fed Brady today. He is taking about 20 ml every feeding. He still is very sleepy, and the nurses continue to give him pain medicine when he looks uncomfortable. Ali also gave him some medicine through the J-tube.
We have more meetings scheduled for tomorrow morning. We're looking forward to talking to the doctors during rounds to get a better idea of what they're thinking about Brady's progress. We still feel like we need more experience using Brady's new equipment.
Ali had another incision check today and everything seems to be healing very well.
It's great to be in the same room with Brady, and it seems like we're getting closer to having our entire family together for the first time.
With love,
Tyler, Ali, Ava, Casey and Brady
The hospital room is very nice. There is a double bed, a reclining chair, TV, bathroom, and a window view. Brady is still under the care of the nursing staff. They stop in every four hours or so to check vitals, add more milk to his feeding machine, give him medicine, etc.
Ali and I are learning how to care for Brady. We took a class at 4:00 that went over the G-J tube and the feeding pump. We learned how to work the devices, how to clean them, and some troubleshooting tips.
At 5:00 we met with a home care nurse. She gave us our feeding pump, tubing, syringes, backpack, and all of the accessories we need to feed Brady at home. We will have 24 hour phone support from their nursing staff if we need it.
Ali and I both fed Brady today. He is taking about 20 ml every feeding. He still is very sleepy, and the nurses continue to give him pain medicine when he looks uncomfortable. Ali also gave him some medicine through the J-tube.
We have more meetings scheduled for tomorrow morning. We're looking forward to talking to the doctors during rounds to get a better idea of what they're thinking about Brady's progress. We still feel like we need more experience using Brady's new equipment.
Ali had another incision check today and everything seems to be healing very well.
It's great to be in the same room with Brady, and it seems like we're getting closer to having our entire family together for the first time.
With love,
Tyler, Ali, Ava, Casey and Brady
Wednesday, April 4, 2012
Training
Ali called me this morning around 8:00 and was flustered. The charge nurse reserved a room at the hospital for tonight and wanted us to stay with Brady. They had placed us into three classes to teach us how to use the G-J tube, the feeding pump and other items for bringing Brady home.
Ali tried to explain to her that we needed to talk as a family before we could commit to anything. We need to schedule around two kids at home, work schedules, grandparents' schedules, Ali's previously scheduled doctors appointments, etc. I called one of the nurses and explained that we really needed more time before we could schedule anything.
When we initially talked about the the G-J surgery, the nurses told us it would take around a week before Brady would come home. Brady still is on heavy pain medication, isn't eating his food, hasn't had a bowel movement, and doesn't seem to us like he's ready to come home.
Ali spent the entire day holding Brady. They removed the IV from his hand and are now giving him his pain medication (morphine and Tylenol) orally. Brady drank 10 ml from a bottle at one point. He still looks very sleepy. The nurses and doctors feel like he is healing very well.
The charge nurse visited Ali four or five times during the day and tried to keep scheduling classes. Ali tried communicating with me, but Wednesdays are extremely busy at school, and I didn't have time to get back to her. When I arrived at the hospital around 4:00, Ali looked exhausted.
Brady's nurse at the time (Cathy) was extremely kind. She explained to us that the charge nurse tries to fill schedules. There was a hospital room available, so wanted to reserve it for us. The same was true for open class times. Cathy told us that we shouldn't feel pressured. We can back out of anything scheduled at the last minute without any problems.
Cathy spent some time explaining the G-J tube to us. Both Ali and I connected and disconnected the tubes on Brady and had some of our questions answered. She also walked us down to see one of the hospital boarding rooms in the NICU. Brady will be able to sleep with us in the room and will be disconnected from all equipment. The same nurses from the NICU are available to assist us at all times in our room. Seeing the room really reduced some of our anxiety about our overnight stay.
Ali and I asked to move the room reservation to tomorrow night. They did that for us and changed our training times accordingly. We will be trained on the G-J tube at 4:00 p.m. and trained on the feeding pump at 5:00 p.m. We will stay overnight in the room with Brady and practice caring for him. At 9:00 a.m. on Friday we will have more training (Danny sling, reflux training, CPR, etc.).
Grandma Marie will start off watching the kids tomorrow. She will then pass them off to Grandma Rita to spend the night with them at our house and get Ava off to school on Friday.
Ali also goes to the doctor at 1:30 for another incision check. It seems to be fully healed now, but it will be nice to hear what the doctors say.
We really don't know what to expect tomorrow or in the days to come. We hope that Brady is acting more like a baby, so we can practice what it will be like to care for him at home.
With love,
Tyler, Ali, Ava, Casey and Brady
Ali tried to explain to her that we needed to talk as a family before we could commit to anything. We need to schedule around two kids at home, work schedules, grandparents' schedules, Ali's previously scheduled doctors appointments, etc. I called one of the nurses and explained that we really needed more time before we could schedule anything.
When we initially talked about the the G-J surgery, the nurses told us it would take around a week before Brady would come home. Brady still is on heavy pain medication, isn't eating his food, hasn't had a bowel movement, and doesn't seem to us like he's ready to come home.
Ali spent the entire day holding Brady. They removed the IV from his hand and are now giving him his pain medication (morphine and Tylenol) orally. Brady drank 10 ml from a bottle at one point. He still looks very sleepy. The nurses and doctors feel like he is healing very well.
The charge nurse visited Ali four or five times during the day and tried to keep scheduling classes. Ali tried communicating with me, but Wednesdays are extremely busy at school, and I didn't have time to get back to her. When I arrived at the hospital around 4:00, Ali looked exhausted.
Brady's nurse at the time (Cathy) was extremely kind. She explained to us that the charge nurse tries to fill schedules. There was a hospital room available, so wanted to reserve it for us. The same was true for open class times. Cathy told us that we shouldn't feel pressured. We can back out of anything scheduled at the last minute without any problems.
Cathy spent some time explaining the G-J tube to us. Both Ali and I connected and disconnected the tubes on Brady and had some of our questions answered. She also walked us down to see one of the hospital boarding rooms in the NICU. Brady will be able to sleep with us in the room and will be disconnected from all equipment. The same nurses from the NICU are available to assist us at all times in our room. Seeing the room really reduced some of our anxiety about our overnight stay.
Ali and I asked to move the room reservation to tomorrow night. They did that for us and changed our training times accordingly. We will be trained on the G-J tube at 4:00 p.m. and trained on the feeding pump at 5:00 p.m. We will stay overnight in the room with Brady and practice caring for him. At 9:00 a.m. on Friday we will have more training (Danny sling, reflux training, CPR, etc.).
Grandma Marie will start off watching the kids tomorrow. She will then pass them off to Grandma Rita to spend the night with them at our house and get Ava off to school on Friday.
Ali also goes to the doctor at 1:30 for another incision check. It seems to be fully healed now, but it will be nice to hear what the doctors say.
We really don't know what to expect tomorrow or in the days to come. We hope that Brady is acting more like a baby, so we can practice what it will be like to care for him at home.
With love,
Tyler, Ali, Ava, Casey and Brady
Tuesday, April 3, 2012
Recovery Day
Brady spent most of the day sleeping on a warming bed. They are beginning to reduce the amount of pain medicine. They have started feeding him small amounts of milk into the jejunum tube (small intestine). They are using the gastric tube to help vent his stomach. It will take a day or two for his digestive system to work properly after the surgery.
When I arrived at the hospital Brady was a little fussy. It's hard to tell if he's in pain or hungry. I was able to hold him for a little while and he calmed down. Ali also spent time holding him today. It's more difficult now working around all of the tubes and wires.
Ali was pretty grossed out today when she looked down and noticed that some of Brady's stomach fluid had leaked on her pants. The bile was a toxic, neon green color. If that was the cause of Brady's reflux, it's obvious why it caused him such discomfort. It made my stomach churn just looking at it.
The nurses said they will try bottle feeding him tomorrow at some point. They said they will use "ad lib" feeding. Instead of working off a feeding schedule, they will feed him when he wants to eat. They will supplement the amount with milk through the G-J tube.
The surgeons stopped by to see Brady several times during the day. Ali was also there when the doctors and nurses did their rounds. Everyone said that Brady is recovering quickly and looks great.
The doctors told Ali today that we need to take classes to learn how to use the G-J tube and care for Brady. It's still a little surreal to see this plastic device stuck in Brady's abdomen.
We've been told that Brady will have the G-J tube for at least three months. Ali and I are excited to start feeding Brady tomorrow with a bottle and his new device.
We're completely blown away by Brady's strength and resiliency. We know that he continues to be uplifted by your messages and prayers.
With love,
Tyler, Ali, Ava, Casey and Brady
When I arrived at the hospital Brady was a little fussy. It's hard to tell if he's in pain or hungry. I was able to hold him for a little while and he calmed down. Ali also spent time holding him today. It's more difficult now working around all of the tubes and wires.
Ali was pretty grossed out today when she looked down and noticed that some of Brady's stomach fluid had leaked on her pants. The bile was a toxic, neon green color. If that was the cause of Brady's reflux, it's obvious why it caused him such discomfort. It made my stomach churn just looking at it.
The nurses said they will try bottle feeding him tomorrow at some point. They said they will use "ad lib" feeding. Instead of working off a feeding schedule, they will feed him when he wants to eat. They will supplement the amount with milk through the G-J tube.
The surgeons stopped by to see Brady several times during the day. Ali was also there when the doctors and nurses did their rounds. Everyone said that Brady is recovering quickly and looks great.
The doctors told Ali today that we need to take classes to learn how to use the G-J tube and care for Brady. It's still a little surreal to see this plastic device stuck in Brady's abdomen.
We've been told that Brady will have the G-J tube for at least three months. Ali and I are excited to start feeding Brady tomorrow with a bottle and his new device.
We're completely blown away by Brady's strength and resiliency. We know that he continues to be uplifted by your messages and prayers.
With love,
Tyler, Ali, Ava, Casey and Brady
Monday, April 2, 2012
Battle Wounds
Once again, today didn't go as planned. We were told that Brady's surgery would take place at 3:20 p.m. Ava and I went back to school this morning. Ali's dad was going to drop Ali off at the hospital in the late morning, so she could be there with Brady before the surgery.
Since we knew the surgery schedule could change, Ali was going to text me with updates. Depending on when Brady went to surgery, I was going to go up to the hospital before he was wheeled down to the operating room or after he came back.
I received a phone call at 10:00 a.m. from the surgeon saying they were bringing Brady down to the operating room now. Ali hadn't left for the hospital yet. I called Ali and could tell she was disappointed she wouldn't be there to see him before the operation. She said, "I wanted to see his perfect body one last time before they cut it open".
Ali arrived at the hospital at 10:45. She sat in Brady's nursery area, talked to the nurse, and waited for him to come back.
At 11:45 they wheeled Brady back into the room. The surgeons and nurses met to go over a recovery plan for Brady. They have him on heavy doses of pain killers and are starting him with a sugar water diet through an IV.
The nurses were surprised that Brady came back into the room without a ventilator. It's a great sign that he was strong enough to breathe on his own almost immediately after the surgery.
The doctors said the surgery went as expected. They used a laparoscopic technique where they made a couple of small incisions in his abdomen (one above the tube and one under the belly button) and inserted a tiny telescope that helped the surgeons see the stomach and surrounding organs.
Ali said he briefly opened his eyes a couple of times. However, he spent most of the afternoon sleeping and recovering.
I made it up to the hospital around 4:00. Brady started crying and seemed to be in pain. Ali sat down in a chair and held Brady for the first time since the surgery. Brady calmed back down again almost immediately.
It was strange to see Brady surrounded by so many tubes again. He has an IV in his hand and two tubes coming out of his belly. They are using them now to vent and drain his stomach, but eventually we will use them to feed him into his stomach or intestine. His body is once again more swollen due to fluids from the surgery.
We're hoping for a quick recovery for Brady. We appreciate all of your messages and prayers.
With love,
Tyler, Ali, Ava, Casey and Brady
Since we knew the surgery schedule could change, Ali was going to text me with updates. Depending on when Brady went to surgery, I was going to go up to the hospital before he was wheeled down to the operating room or after he came back.
I received a phone call at 10:00 a.m. from the surgeon saying they were bringing Brady down to the operating room now. Ali hadn't left for the hospital yet. I called Ali and could tell she was disappointed she wouldn't be there to see him before the operation. She said, "I wanted to see his perfect body one last time before they cut it open".
Ali arrived at the hospital at 10:45. She sat in Brady's nursery area, talked to the nurse, and waited for him to come back.
At 11:45 they wheeled Brady back into the room. The surgeons and nurses met to go over a recovery plan for Brady. They have him on heavy doses of pain killers and are starting him with a sugar water diet through an IV.
The nurses were surprised that Brady came back into the room without a ventilator. It's a great sign that he was strong enough to breathe on his own almost immediately after the surgery.
The doctors said the surgery went as expected. They used a laparoscopic technique where they made a couple of small incisions in his abdomen (one above the tube and one under the belly button) and inserted a tiny telescope that helped the surgeons see the stomach and surrounding organs.
Ali said he briefly opened his eyes a couple of times. However, he spent most of the afternoon sleeping and recovering.
I made it up to the hospital around 4:00. Brady started crying and seemed to be in pain. Ali sat down in a chair and held Brady for the first time since the surgery. Brady calmed back down again almost immediately.
It was strange to see Brady surrounded by so many tubes again. He has an IV in his hand and two tubes coming out of his belly. They are using them now to vent and drain his stomach, but eventually we will use them to feed him into his stomach or intestine. His body is once again more swollen due to fluids from the surgery.
We're hoping for a quick recovery for Brady. We appreciate all of your messages and prayers.
With love,
Tyler, Ali, Ava, Casey and Brady
Sunday, April 1, 2012
100 ml
I didn't have school or practice this morning, so we had some quality time as a family. The kids were able to sleep in, we ate breakfast together, and we all snuggled together on our bed. It was difficult to drop Ava and Casey off with Grandma and Grandpa Vollmer, but we knew it would only take them a few minutes to get settled in and forget about us. :)
Ali and I arrived to the hospital to learn that Brady had a very sleepy night. They tried feeding him every three hours and were only able to give him 10-20 ml during each session. The nurse fed him 60 ml at 10 a.m.
The OT arrived before the 1 p.m. feeding and did exercises with Brady to stretch his muscles and wake him up. Ali tried everything in the OT book with that feeding. The OT directed her to use a pacifier to get him sucking, tilt the bottle, push up the chin, hold in the cheeks, burp him, tilt him down, sit him up, burp him again, etc. After 30 minutes of work he had taken 30 ml and was sound asleep. If they had an extra bed in the room, Ali and I might have fallen asleep next to him. It can be exhausting to do the song and dance necessary to feed babies like Brady.
When it was time for the 4 p.m. feeding, Brady still had only been awake for a few minutes the entire time we were there. The nurse warmed up 60 ml and handed me the bottle. Instead of going through the thousand steps, I just sat in the chair, cradled my arm under his head and placed the bottle in his mouth. Brady's eyes were closed and I figured we'd be lucky to get 10 ml out of him.
Maybe he had been resting up all day for this one meal. Maybe he was trying to impress him mom and dad with his last feeding with us before the surgery (he will need to have an empty stomach for the 12 hours before the procedure).
Whatever the reason, Brady put everything together for one feeding. He had a perfect rhythm for his suck, swallow, breathe. He was taking in large amounts perfectly into his mouth without the need to support his cheeks or chin. He showed no signs of reflux at all. Within ten minutes the bottle was empty, and it felt like I was just a spectator the entire time.
We called the nurse over and she was very surprised. She asked if she should warm some more milk. Brady still looked like he was asleep, but we thought we'd give it a try. It took her about 10 minutes to get the milk out, get it warmed, and bring it back over to us. I tried to burp Brady the entire time to keep him awake, but it looked like he was sound asleep.
She brought over another 40 ml. I put him back in the same position and put the bottle into his mouth. The same magic happened again. Within 10 minutes it was completely gone.
We could've warmed more milk at that time, but we thought we'd end on a good note. He drank 100 ml in 20 minutes of actual feeding time. We have no idea how much he could've eaten if a larger amount was warmed up earlier. He showed absolutely no signs of reflux and looked so content after the meal. And the best part about it was we didn't need to stand on our head to feed him. We hope it's a positive sign of things to come.
Before the 4:00 feeding we received a phone call from Ava telling us she had lost her first tooth (it was loose and ready to come out). She was over at her cousins' house and was eating an apple when she lost it. Ali and I were bummed that we weren't there with her, but we were thankful to be with her tonight to prepare for the Tooth Fairy's arrival.
Earlier in the day Ali and I also signed consent papers for Brady's surgery tomorrow. He is scheduled to have his surgery at 3:20 p.m. We're thankful for the talented doctors and nurses who will be involved in the procedure. We were able to ask more questions today, and we feel like we're all ready for tomorrow.
Please say an extra prayer for Brady and the medical staff tomorrow. We can't wait to get him back to those 100 ml feedings again very soon.
With love,
Tyler, Ali, Ava, Casey and Brady
Ali and I arrived to the hospital to learn that Brady had a very sleepy night. They tried feeding him every three hours and were only able to give him 10-20 ml during each session. The nurse fed him 60 ml at 10 a.m.
The OT arrived before the 1 p.m. feeding and did exercises with Brady to stretch his muscles and wake him up. Ali tried everything in the OT book with that feeding. The OT directed her to use a pacifier to get him sucking, tilt the bottle, push up the chin, hold in the cheeks, burp him, tilt him down, sit him up, burp him again, etc. After 30 minutes of work he had taken 30 ml and was sound asleep. If they had an extra bed in the room, Ali and I might have fallen asleep next to him. It can be exhausting to do the song and dance necessary to feed babies like Brady.
When it was time for the 4 p.m. feeding, Brady still had only been awake for a few minutes the entire time we were there. The nurse warmed up 60 ml and handed me the bottle. Instead of going through the thousand steps, I just sat in the chair, cradled my arm under his head and placed the bottle in his mouth. Brady's eyes were closed and I figured we'd be lucky to get 10 ml out of him.
Maybe he had been resting up all day for this one meal. Maybe he was trying to impress him mom and dad with his last feeding with us before the surgery (he will need to have an empty stomach for the 12 hours before the procedure).
Whatever the reason, Brady put everything together for one feeding. He had a perfect rhythm for his suck, swallow, breathe. He was taking in large amounts perfectly into his mouth without the need to support his cheeks or chin. He showed no signs of reflux at all. Within ten minutes the bottle was empty, and it felt like I was just a spectator the entire time.
We called the nurse over and she was very surprised. She asked if she should warm some more milk. Brady still looked like he was asleep, but we thought we'd give it a try. It took her about 10 minutes to get the milk out, get it warmed, and bring it back over to us. I tried to burp Brady the entire time to keep him awake, but it looked like he was sound asleep.
She brought over another 40 ml. I put him back in the same position and put the bottle into his mouth. The same magic happened again. Within 10 minutes it was completely gone.
We could've warmed more milk at that time, but we thought we'd end on a good note. He drank 100 ml in 20 minutes of actual feeding time. We have no idea how much he could've eaten if a larger amount was warmed up earlier. He showed absolutely no signs of reflux and looked so content after the meal. And the best part about it was we didn't need to stand on our head to feed him. We hope it's a positive sign of things to come.
Before the 4:00 feeding we received a phone call from Ava telling us she had lost her first tooth (it was loose and ready to come out). She was over at her cousins' house and was eating an apple when she lost it. Ali and I were bummed that we weren't there with her, but we were thankful to be with her tonight to prepare for the Tooth Fairy's arrival.
Earlier in the day Ali and I also signed consent papers for Brady's surgery tomorrow. He is scheduled to have his surgery at 3:20 p.m. We're thankful for the talented doctors and nurses who will be involved in the procedure. We were able to ask more questions today, and we feel like we're all ready for tomorrow.
Please say an extra prayer for Brady and the medical staff tomorrow. We can't wait to get him back to those 100 ml feedings again very soon.
With love,
Tyler, Ali, Ava, Casey and Brady
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