After the flurry of appointments a couple of weeks ago, things have settled down a little bit. We're really enjoying our time together this summer as a new family of five. We've spent a lot of time around water and have enjoyed a number of gatherings with family and friends. Brady has done remarkably well considering we haven't had a consistent schedule, and most of his naps have taken place in a car seat moving from one summer activity to the next.
About a week ago we received a message from our home care nurse telling us that Brady has reached the point where she no longer needs to visit. Ali is happy to have one less appointment to schedule. :)
We finally had our follow up appointment with the neurologist to go over the EEG results. She said there were no signs of seizures during the two hour test. In addition to seizures, they look for symmetry in brain waves, and there was some abnormal activity due to the injuries in his brain. The neurologist said she expected that to occur and she's not overly concerned by it.
The last time she saw Brady was about a month ago, and she was amazed at how much better he looked. She said he only had minor tone issues in his wrists and ankles, and she was impressed by how well he moved and interacted with her.
The neurologist said we can start weening Brady off Keppra (his anti-seizure medicine). We have moved from .5 ml twice a day to only once per day. We will eliminate it completely in three weeks.
We also started reducing Brady's overnight feeding assistance. Previously, Brady was connected to the feeding machine for 12 hours each night. We are reducing it by one hour every week.
We're hoping that reducing the nightly feeding amount will improve the amount he eats by bottle during the day. We've noticed that Brady isn't very hungry in the mornings. It makes sense that he wouldn't want to drink milk when he wakes up because he's being fed the entire time he's sleeping.
The biggest advantage to his overnight feeding is that Brady has slept through the night since he was in the hospital (sometimes we need to wake him up after 13 or 14 hours of sleep). Once again, this makes sense because he never wakes up hungry during the night.
We started feeding Brady rice cereal last week and will start introducing new foods every week from now on. Brady does a good job eating solid foods and is also doing much better with his bottle feeds. We've noticed that he's showing very few signs of reflux now. It's quite common for him to drink an entire 70ml (2.5 ounce) bottle in about five minutes without stopping (it previously took us about 30 minutes with several stops for reflux issues).
Brady is now 16 pounds, 8 ounces. He continues to be above the 75th percentile in height and weight.
Brady is seeing a physical therapist from Gillette every other week. She is working with him on rolling over, sitting up, balancing, and the first movements in crawling. She is also working on keeping his hands open. Brady still has a tendency to tuck his thumbs under his fingers in a fist at times. We are ordering new splints for him to wear at night to help with this.
The occupational therapist from the school district visits every week. She is also working with Brady on how to roll over, play with his toes, interact with toys, and maintain proper body position during tummy time. Since those sessions take place at our house, Ava is always excited to learn new activities to do with Brady.
Last Sunday was a very special day for our family because Brady was baptized. It was a great time for us to reflect on these past five months and be thankful for the countless miracles we've witnessed with our son.
We keep running into old friends and acquaintances who tell us that they're following Brady's story, have been touched by his journey, and are praying for him every night. We've also been told by several people that Brady's journal entries have helped them reflect on what's truly important in their lives.
I guess that's Brady's way of thanking you for all of your prayers, words of encouragement and support. Please keep them coming. :)
With love,
Tyler, Ali, Ava, Casey and Brady
Sunday, July 22, 2012
Tuesday, July 3, 2012
Happy 4th of July!
The past week has been a whirlwind of appointments for Brady. I've been working in the weight room every day until noon, and we've tried to schedule most of our appointments in the afternoon. Ali and I have talked often about how fortunate we are to have some flexibility with our schedules. We don't know how two parents working full time would be able to make it all happen.
Brady had an EEG test last Monday. The nurse placed 28 electrodes on his head about two inches apart. Each electrode was dipped in a conductive jelly. She then placed some cotton around each probe to act as hair and then taped them in place. She then wrapped his head with a cloth bandage to hold everything together and connected him to a computer monitor and camera. This process took about 15 minutes.
She then recorded his brain activity for two hours. The nurse made notes any time he moved or talked. Brady fell asleep on my chest for around 30 minutes. The rest of the time he was laughing and cooing.
We were supposed to meet with the neurologist last Tuesday to go over the test results. She had a family emergency and needed to reschedule our appointment. However, she called us to let us know that his test came back perfect. This means we might be able to start weening Brady off his seizure medicine in the near future.
We met with a physical therapist from Gillette last Tuesday. She worked on Brady's arms and legs. She also worked on him rolling from front to back and back to front. She sat him up and tilted his body to the side to work on neck strength and reflexes. She was impressed with Brady's progress from the last time she saw him.
On Friday we went to Amplatz for Brady's four month checkup.
We first met with a physical therapist who evaluated Brady. She said Brady had some tone on the left side of his body, but it was minimal. She was very impressed with how much he was laughing and talking.
We then took Brady downstairs for a swallow study. They started by feeding him a liquid with the same consistency as our thickener at home. They used an x-ray machine to take quick pictures of him while he was eating. It was interesting to watch the sucking movement several times before he actually swallowed something. We could watch the fluid moving from the back of his mouth and down his esophagus. Everything looked great. They then moved to a liquid with no thickener. Brady also took that without any problems. They then fed him some rice cereal from a spoon and he did that perfectly as well.
They recommended that we could try feeding him milk without the thickener. We tried that on Saturday, but it seemed like Brady had more reflux issues (the doctors warned us about that). We went back to the thickener on Sunday and he seems to be eating better again.
After the swallow study, we met with two neonatologists who worked with Brady during his hospital stay. They gave us the most positive report we've received to date. They aren't at all concerned about the dark spot on the back of his head. They don't think he'll have any vision problems at all from that injury.
They explained that the brain in that location has a lot of plasticity and recovers from injuries very well. Brady did see an eye doctor two weeks ago and everything is perfect at this point. We will meet again with an eye doctor in 6 months just to be proactive with any possible vision concerns.
They are more concerned about the dark spot on the right side of his brain. The right side of the brain controls the left side of the body. In all of our other appointments, we've heard about increased tone in all four limbs. On Friday they said it was only on the left side and it was only a very slight difference. Ali and I have noticed that Brady's left eye also seems to be droopier at times (especially when he is tired). We don't know what this means for his long term development, but we'll continue to learn more through therapy and our observations.
Yesterday we met with Brady's pediatrician. Once again, he was very impressed with Brady's progress from his last appointment. He said cognitive development is most important at this point and Brady was showing off for him (talking, cooing, laughing, etc.). He also said Brady's tone was minimal on the left side.
We are going to start feeding Brady rice cereal this week. We are also going to reduce his overnight feedings by one hour each week. The goal is to eventually get him eating enough on his own to get rid of his feeding tube.
Today we met with the therapist from the school district. She also was impressed with how Brady is looking and acting. Brady is bringing both of his hands together, bringing his hands to his mouth, grabbing at toys, etc.
All in all, it was a busy week filled with lots of hope. We fully believe in the power of prayer and continue to be amazed at Brady's progress. We can't thank you enough for all of your love and support.
Have a fun and relaxing (and cool) 4th of July!
With love,
Tyler, Ali, Ava, Casey and Brady
Brady had an EEG test last Monday. The nurse placed 28 electrodes on his head about two inches apart. Each electrode was dipped in a conductive jelly. She then placed some cotton around each probe to act as hair and then taped them in place. She then wrapped his head with a cloth bandage to hold everything together and connected him to a computer monitor and camera. This process took about 15 minutes.
She then recorded his brain activity for two hours. The nurse made notes any time he moved or talked. Brady fell asleep on my chest for around 30 minutes. The rest of the time he was laughing and cooing.
We were supposed to meet with the neurologist last Tuesday to go over the test results. She had a family emergency and needed to reschedule our appointment. However, she called us to let us know that his test came back perfect. This means we might be able to start weening Brady off his seizure medicine in the near future.
We met with a physical therapist from Gillette last Tuesday. She worked on Brady's arms and legs. She also worked on him rolling from front to back and back to front. She sat him up and tilted his body to the side to work on neck strength and reflexes. She was impressed with Brady's progress from the last time she saw him.
On Friday we went to Amplatz for Brady's four month checkup.
We first met with a physical therapist who evaluated Brady. She said Brady had some tone on the left side of his body, but it was minimal. She was very impressed with how much he was laughing and talking.
We then took Brady downstairs for a swallow study. They started by feeding him a liquid with the same consistency as our thickener at home. They used an x-ray machine to take quick pictures of him while he was eating. It was interesting to watch the sucking movement several times before he actually swallowed something. We could watch the fluid moving from the back of his mouth and down his esophagus. Everything looked great. They then moved to a liquid with no thickener. Brady also took that without any problems. They then fed him some rice cereal from a spoon and he did that perfectly as well.
They recommended that we could try feeding him milk without the thickener. We tried that on Saturday, but it seemed like Brady had more reflux issues (the doctors warned us about that). We went back to the thickener on Sunday and he seems to be eating better again.
After the swallow study, we met with two neonatologists who worked with Brady during his hospital stay. They gave us the most positive report we've received to date. They aren't at all concerned about the dark spot on the back of his head. They don't think he'll have any vision problems at all from that injury.
They explained that the brain in that location has a lot of plasticity and recovers from injuries very well. Brady did see an eye doctor two weeks ago and everything is perfect at this point. We will meet again with an eye doctor in 6 months just to be proactive with any possible vision concerns.
They are more concerned about the dark spot on the right side of his brain. The right side of the brain controls the left side of the body. In all of our other appointments, we've heard about increased tone in all four limbs. On Friday they said it was only on the left side and it was only a very slight difference. Ali and I have noticed that Brady's left eye also seems to be droopier at times (especially when he is tired). We don't know what this means for his long term development, but we'll continue to learn more through therapy and our observations.
Yesterday we met with Brady's pediatrician. Once again, he was very impressed with Brady's progress from his last appointment. He said cognitive development is most important at this point and Brady was showing off for him (talking, cooing, laughing, etc.). He also said Brady's tone was minimal on the left side.
We are going to start feeding Brady rice cereal this week. We are also going to reduce his overnight feedings by one hour each week. The goal is to eventually get him eating enough on his own to get rid of his feeding tube.
Today we met with the therapist from the school district. She also was impressed with how Brady is looking and acting. Brady is bringing both of his hands together, bringing his hands to his mouth, grabbing at toys, etc.
All in all, it was a busy week filled with lots of hope. We fully believe in the power of prayer and continue to be amazed at Brady's progress. We can't thank you enough for all of your love and support.
Have a fun and relaxing (and cool) 4th of July!
With love,
Tyler, Ali, Ava, Casey and Brady
Sunday, June 24, 2012
APGAR Scores
We received a letter in the mail this week with a detailed evaluation from the neurologist we saw on Monday. The letter was the first time we've learned about Brady's Apgar scores after his birth. The letter also caused us to reflect on how far Brady has come in these past four months.
An Apgar score rates a baby's appearance, pulse, responsiveness, muscle activity, and breathing with a number from 0 to 2 (2 being the strongest rating). The numbers are then totaled out of a maximum of ten.
Here's how each is used to assess a baby's condition at birth:
Activity (muscle tone)
0 Limp; no movement
1 Some flexion of arms and legs
2 Active motion
Pulse (heart rate)
0 No heart rate
1 Fewer than 100 beats per minute
2 At least 100 beats per minute
Grimace (reflex response)
0 No response to airways being suctioned
1 Grimace during suctioning
2 Grimace and pull away, cough, or sneeze during suctioning
Appearance (color)
0 The baby's whole body is completely bluish-gray or pale
1 Good color in body with bluish hands or feet
2 Good color all over
Respiration (breathing)
0 Not breathing
1 Weak cry; may sound like whimpering, slow or irregular breathing
2 Good, strong cry; normal rate and effort of breathing
The neurologist's letter described these numbers from Brady's chart:
"His Apgars were 0 at 1 minute, 2 at 5 minutes, 4 at 10 minutes and 7 at 20 minutes".
This means that Brady showed absolutely no signs of life at one minute of age. Since they don't break down the scores by category, we would need to guess where he earned those points as time went on. While they were working on Brady, the anesthesiologist came over and told us that Brady was "starting to pink up a bit". I would guess that Brady probably had a trace heartbeat and some color at 5 minutes old giving him those two points. By 10 minutes old he might have moved a little and started breathing a little on his own (with help of ventilator). By 20 minutes old he was still very sick and struggling to survive.
It's haunting to read the Apgar scores and think about those 20 minutes. I'll never forget seeing Brady come out limp. I'll never forget that silence. I'll never forget the look on the doctor's face when the nurse called for the first Code Blue.
Ali kept asking me what was going on and I couldn't answer her. She couldn't see anything because of the sheets in front of her face. She started to struggle and try to free her arms that were strapped down. I looked at the anesthesiologist, he nodded at me, and he gave her some medicine to knock her out for a few minutes.
The anesthesiologist was the first one to give us some hope. He said Brady was getting some color and was going to be fine. It's amazing how your life flashes before your eyes when you go through a moment like that.
The neurologist's letter also talked about Brady's long road to health while he was in the hospital:
"He required positive pressure ventilation, chest compressions and intubation after delivery. He was intubated for a total of five days before being extubated. His neonatal course was complicated by hypotension (low blood pressure) requiring dopamine and dobutamine, thrombocytopenia (platelets in blood), disseminated intravascular coagulation (blood clotting), transaminitis (liver), hypoglycemia (low blood sugar), hyperglycemia (high blood sugar), meconium in lungs, and neonatal seizure. He also required a gastrojejunostomy tube before being discharged to home on April 7, 2012".
It's hard to believe, but the doctors and nurses said Brady was much healthier when he arrived at Amplatz than they expected. Everyone kept talking about how sick Brady was those first few days. Looking back on it now, we didn't understand how hard he was struggling to survive. Almost all of his organs were out of whack.
For six weeks we watched Brady grow stronger until he was healthy enough to come home. His feeding tube is a daily reminder that he's still a work in progress.
The neurologist's letter also described our biggest concerns moving forward:
"An MRI scan was obtained which did reveal a parenchymal hemorrhagic infarction. The areas infected included the left occipital lobe adjacent to the occipital horn in the left lateral ventricle (1.2 cm x 1.2 cm) and a second hypodense area noted in the periventricular white matter on the right corona radiata (5mm in diameter). He had focal brain injuries as well as a global injury that is indicated by the increased tone in his arms and legs".
We know that Brady's brain is not normal. The "dark spots" on his brain were caused by the lack of blood and oxygen during his birth and a possible seizure during his transport to Amplatz. There are still so many unknowns about how those brain injuries will affect our son in the future.
The neurologist's letter also provides us with a great amount of hope:
"Brady was a very bright, alert, young baby who was cooing and smiling throughout the visit. He would raise his hands up and down and flex his legs in excitement. He was able to track me as I moved around the room. No abnormal movement was noted. He showed all normal reflexes for his age".
We're so proud of our miracle baby. We're also so thankful for all of the prayers and words of encouragement. Thanks for everything!
With love,
Tyler, Ali, Ava, Casey and Brady
P.S. We've added a couple of pictures from Brady's four month photo shoot. Click on "see all photos" under the Super Brady picture to see them.
An Apgar score rates a baby's appearance, pulse, responsiveness, muscle activity, and breathing with a number from 0 to 2 (2 being the strongest rating). The numbers are then totaled out of a maximum of ten.
Here's how each is used to assess a baby's condition at birth:
Activity (muscle tone)
0 Limp; no movement
1 Some flexion of arms and legs
2 Active motion
Pulse (heart rate)
0 No heart rate
1 Fewer than 100 beats per minute
2 At least 100 beats per minute
Grimace (reflex response)
0 No response to airways being suctioned
1 Grimace during suctioning
2 Grimace and pull away, cough, or sneeze during suctioning
Appearance (color)
0 The baby's whole body is completely bluish-gray or pale
1 Good color in body with bluish hands or feet
2 Good color all over
Respiration (breathing)
0 Not breathing
1 Weak cry; may sound like whimpering, slow or irregular breathing
2 Good, strong cry; normal rate and effort of breathing
The neurologist's letter described these numbers from Brady's chart:
"His Apgars were 0 at 1 minute, 2 at 5 minutes, 4 at 10 minutes and 7 at 20 minutes".
This means that Brady showed absolutely no signs of life at one minute of age. Since they don't break down the scores by category, we would need to guess where he earned those points as time went on. While they were working on Brady, the anesthesiologist came over and told us that Brady was "starting to pink up a bit". I would guess that Brady probably had a trace heartbeat and some color at 5 minutes old giving him those two points. By 10 minutes old he might have moved a little and started breathing a little on his own (with help of ventilator). By 20 minutes old he was still very sick and struggling to survive.
It's haunting to read the Apgar scores and think about those 20 minutes. I'll never forget seeing Brady come out limp. I'll never forget that silence. I'll never forget the look on the doctor's face when the nurse called for the first Code Blue.
Ali kept asking me what was going on and I couldn't answer her. She couldn't see anything because of the sheets in front of her face. She started to struggle and try to free her arms that were strapped down. I looked at the anesthesiologist, he nodded at me, and he gave her some medicine to knock her out for a few minutes.
The anesthesiologist was the first one to give us some hope. He said Brady was getting some color and was going to be fine. It's amazing how your life flashes before your eyes when you go through a moment like that.
The neurologist's letter also talked about Brady's long road to health while he was in the hospital:
"He required positive pressure ventilation, chest compressions and intubation after delivery. He was intubated for a total of five days before being extubated. His neonatal course was complicated by hypotension (low blood pressure) requiring dopamine and dobutamine, thrombocytopenia (platelets in blood), disseminated intravascular coagulation (blood clotting), transaminitis (liver), hypoglycemia (low blood sugar), hyperglycemia (high blood sugar), meconium in lungs, and neonatal seizure. He also required a gastrojejunostomy tube before being discharged to home on April 7, 2012".
It's hard to believe, but the doctors and nurses said Brady was much healthier when he arrived at Amplatz than they expected. Everyone kept talking about how sick Brady was those first few days. Looking back on it now, we didn't understand how hard he was struggling to survive. Almost all of his organs were out of whack.
For six weeks we watched Brady grow stronger until he was healthy enough to come home. His feeding tube is a daily reminder that he's still a work in progress.
The neurologist's letter also described our biggest concerns moving forward:
"An MRI scan was obtained which did reveal a parenchymal hemorrhagic infarction. The areas infected included the left occipital lobe adjacent to the occipital horn in the left lateral ventricle (1.2 cm x 1.2 cm) and a second hypodense area noted in the periventricular white matter on the right corona radiata (5mm in diameter). He had focal brain injuries as well as a global injury that is indicated by the increased tone in his arms and legs".
We know that Brady's brain is not normal. The "dark spots" on his brain were caused by the lack of blood and oxygen during his birth and a possible seizure during his transport to Amplatz. There are still so many unknowns about how those brain injuries will affect our son in the future.
The neurologist's letter also provides us with a great amount of hope:
"Brady was a very bright, alert, young baby who was cooing and smiling throughout the visit. He would raise his hands up and down and flex his legs in excitement. He was able to track me as I moved around the room. No abnormal movement was noted. He showed all normal reflexes for his age".
We're so proud of our miracle baby. We're also so thankful for all of the prayers and words of encouragement. Thanks for everything!
With love,
Tyler, Ali, Ava, Casey and Brady
P.S. We've added a couple of pictures from Brady's four month photo shoot. Click on "see all photos" under the Super Brady picture to see them.
Tuesday, June 19, 2012
Appointments, Appointments, Appointments
We brought Ava back to the doctor yesterday and her legs are now almost completely healed.
We met with a neurologist from Gillette Children's Hospital today. She did an evaluation of Brady and also went over Brady's brain MRI with us (the one taken at Amplatz).
She pretty much echoed everything else we've been hearing lately. Brady was smiling and cooing the entire time during her evaluation, and she was very impressed with everything cognitive (tracking with eyes, talking, etc.).
She said Brady had muscle stiffness in his arms and his legs, but she's optimistic that therapy will help him. She wanted us to set up a number of more appointments for the next few weeks.
Brady will do an EEG brain test for two hours on Monday. Because of Brady's brain injuries, there still is some concern for seizures. Brady has been on seizure medicine since the day of his birth. The EEG exam will give us a better idea of his current brain activity and whether or not we can start weening him from the seizure medicine.
We will have a follow up appointment with the neurologist on Tuesday to go over the EEG results.
Brady also has an appointment for physical therapy at Gillette Children's on Tuesday. We will have these appointments every other week until October, and then they will reevaluate and create a new plan (or continue the existing treatment).
The neurologist also asked us to schedule an appointment with a Physical Muscle & Rehabilitation (PM&R) doctor at Gillette in August. The PM&R doctor will direct the rehabilitation team that may include physical or occupational therapists, speech-language pathologists, social workers, etc.
Because of Brady's birth history (collapsed lung due to meconium) and the fact that his breaths are still fast and shallow, the neurologist also asked us to make an appointment to see a pulmonary specialist at Gillette in October.
Got all of that? Whew.
In addition, Brady saw the home care nurse today. He now weighs 16 pounds (90th percentile), and is 24 inches long (70th percentile). Since Brady is doing well with his growth, that nurse might not need to visit in the future.
The school district's therapist is coming on Thursday to work with Brady.
Next Friday we also have our four month follow up appointment at Amplatz. They will do their evaluation of him and give us their thoughts for future treatment. They will also do another swallow study at that time to see if Brady still has any aspiration problems and if we can eliminate his thickener.
I remember back to our time in the NICU. Once we felt confident Brady was going to live, we started asking questions about his future. They told us that the four month follow up appointment would answer some of our questions. At the time, four months seemed like such a long time to wait. It's hard to believe that appointment is next week.
These four months have really flown by. We're so proud of Brady's progress, and we're hopeful that all of his upcoming appointments will continue to help him grow more strong and healthy.
Thanks for your constant support and encouragement. We feel so blessed to be surrounded by such wonderful family and friends.
With love,
Tyler, Ali, Ava, Casey and Brady
We met with a neurologist from Gillette Children's Hospital today. She did an evaluation of Brady and also went over Brady's brain MRI with us (the one taken at Amplatz).
She pretty much echoed everything else we've been hearing lately. Brady was smiling and cooing the entire time during her evaluation, and she was very impressed with everything cognitive (tracking with eyes, talking, etc.).
She said Brady had muscle stiffness in his arms and his legs, but she's optimistic that therapy will help him. She wanted us to set up a number of more appointments for the next few weeks.
Brady will do an EEG brain test for two hours on Monday. Because of Brady's brain injuries, there still is some concern for seizures. Brady has been on seizure medicine since the day of his birth. The EEG exam will give us a better idea of his current brain activity and whether or not we can start weening him from the seizure medicine.
We will have a follow up appointment with the neurologist on Tuesday to go over the EEG results.
Brady also has an appointment for physical therapy at Gillette Children's on Tuesday. We will have these appointments every other week until October, and then they will reevaluate and create a new plan (or continue the existing treatment).
The neurologist also asked us to schedule an appointment with a Physical Muscle & Rehabilitation (PM&R) doctor at Gillette in August. The PM&R doctor will direct the rehabilitation team that may include physical or occupational therapists, speech-language pathologists, social workers, etc.
Because of Brady's birth history (collapsed lung due to meconium) and the fact that his breaths are still fast and shallow, the neurologist also asked us to make an appointment to see a pulmonary specialist at Gillette in October.
Got all of that? Whew.
In addition, Brady saw the home care nurse today. He now weighs 16 pounds (90th percentile), and is 24 inches long (70th percentile). Since Brady is doing well with his growth, that nurse might not need to visit in the future.
The school district's therapist is coming on Thursday to work with Brady.
Next Friday we also have our four month follow up appointment at Amplatz. They will do their evaluation of him and give us their thoughts for future treatment. They will also do another swallow study at that time to see if Brady still has any aspiration problems and if we can eliminate his thickener.
I remember back to our time in the NICU. Once we felt confident Brady was going to live, we started asking questions about his future. They told us that the four month follow up appointment would answer some of our questions. At the time, four months seemed like such a long time to wait. It's hard to believe that appointment is next week.
These four months have really flown by. We're so proud of Brady's progress, and we're hopeful that all of his upcoming appointments will continue to help him grow more strong and healthy.
Thanks for your constant support and encouragement. We feel so blessed to be surrounded by such wonderful family and friends.
With love,
Tyler, Ali, Ava, Casey and Brady
Wednesday, June 6, 2012
End of the School Year
We need to apologize for being late with this journal entry. It's been a crazy week with the end of the school year and the end of track season. Just when we thought our lives couldn't get any more hectic, Ava wanted to join in the fun.
Ava had a runny nose for a few weeks that started to cause a sore on her nose. She also started to get a rash on her legs on Wednesday. They looked more like bug bites on Thursday. When she woke up on Friday morning, they hadn't gotten any better, so Ali brought her to the doctor. The doctors concluded that she had strep throat, impetigo (an infection) on her nose and thought she might also have HSP (broken blood vessels in her legs caused by her body fighting the strep and impetigo).
When she woke up on Saturday, her entire legs were covered with bruises and her ankles started to swell (this confirmed the HSP). By Saturday night, she couldn't walk at all. We put her on an antibiotic, some ibuprofen, and iced her ankles for the rest of the weekend. She went back to the doctor on Monday and was cleared to go back to school.
The doctors said it can take 4-6 week for her legs to look "normal" again. However, Ava's legs looked much better today (only some minor bruising and splotches). She's looking forward to dancing in the school's talent show on Friday.
There is a concern for kidney damage with HSP, so we need to go back to the doctor on the 18th to make sure everything is okay.
As for Brady, the home care nurse visited today and he is now 15 lbs, 1 ounce and has grown one inch. We continue to supplement his breast milk with formula on every feeding and it seems to be working well.
We have a bunch of appointments coming up. Brady will see a neurologist at Gillette Children's in Burnsville on 6/26. He will go to his NICU follow up at Amplatz on 6/29. We're also hoping to have another swallow study at that time.
We also have PT scheduled with Gillette Children's every other week for the next four months. The school district's therapist will also continue to visit every two weeks.
Brady is now starting to get a little ticklish and is laughing for longer periods of time. He continues to be a very happy baby and we're hopeful that his numerous doctor appointments and therapy sessions will help him grow up strong and healthy.
We're looking forward to the summer and spending more time together as a family. We hope all of you have a relaxing summer as well. As always, thanks for the messages, words of encouragement and prayers.
With love,
Tyler, Ali, Ava, Casey and Brady
Ava had a runny nose for a few weeks that started to cause a sore on her nose. She also started to get a rash on her legs on Wednesday. They looked more like bug bites on Thursday. When she woke up on Friday morning, they hadn't gotten any better, so Ali brought her to the doctor. The doctors concluded that she had strep throat, impetigo (an infection) on her nose and thought she might also have HSP (broken blood vessels in her legs caused by her body fighting the strep and impetigo).
When she woke up on Saturday, her entire legs were covered with bruises and her ankles started to swell (this confirmed the HSP). By Saturday night, she couldn't walk at all. We put her on an antibiotic, some ibuprofen, and iced her ankles for the rest of the weekend. She went back to the doctor on Monday and was cleared to go back to school.
The doctors said it can take 4-6 week for her legs to look "normal" again. However, Ava's legs looked much better today (only some minor bruising and splotches). She's looking forward to dancing in the school's talent show on Friday.
There is a concern for kidney damage with HSP, so we need to go back to the doctor on the 18th to make sure everything is okay.
As for Brady, the home care nurse visited today and he is now 15 lbs, 1 ounce and has grown one inch. We continue to supplement his breast milk with formula on every feeding and it seems to be working well.
We have a bunch of appointments coming up. Brady will see a neurologist at Gillette Children's in Burnsville on 6/26. He will go to his NICU follow up at Amplatz on 6/29. We're also hoping to have another swallow study at that time.
We also have PT scheduled with Gillette Children's every other week for the next four months. The school district's therapist will also continue to visit every two weeks.
Brady is now starting to get a little ticklish and is laughing for longer periods of time. He continues to be a very happy baby and we're hopeful that his numerous doctor appointments and therapy sessions will help him grow up strong and healthy.
We're looking forward to the summer and spending more time together as a family. We hope all of you have a relaxing summer as well. As always, thanks for the messages, words of encouragement and prayers.
With love,
Tyler, Ali, Ava, Casey and Brady
Monday, May 28, 2012
Gillette Children's Hospital
The occupational therapist from the school district visited our house on Tuesday and did a few exercises with Brady and Ali. They will visit again in a couple of weeks.
The home care nurse visited on Wednesday. She weighed him and Brady gained 14 ounces from last week. We've been adding a little formula to each of Brady's bottles and that has seemed to give him the calories necessary to gain weight. She will be back again on Wednesday.
Brady also has an appointment with his pediatrician on Wednesday. Brady will have his follow up appointment with the NICU on June 29.
The biggest change this week is we finally had our first appointment with Gillette Children's Hospital. Ali went to visit a physical therapist at their Burnsville clinic on Tuesday.
After the evaluation, the biggest concern is Brady's increased tone through the lower extremities including adductors (hips), hip extensors (ability to pull knee down and backward), knee extensors and plantarflexors (ankles). There was also increased tone with elbow extension, wrist extension and finger extension. They also said Brady has a slight left head tilt and doesn't move his head equally both ways (neck muscle tone issues).
Muscle tone is defined by muscle resistance when it is being stretched. Muscle tone can be estimated using a 5 point Ashworth scale. They are: 1) no increase in muscle tone; 2) slight increase giving a catch when part is moved in flexion or extension; 3) more marked increase in tone but only after part is easily flexed; 4) considerable increase in tone; and 5) passive movement is difficult and affected part is rigid in flexion or extension.
Brady's scores on an Ashworth scale were between a 2-3 for all of those areas (1 is normal). The therapist also said that those scores weren't consistent. Sometimes he scores better when you try to move his arms and legs. Obviously, you never want to hear that your baby isn't "normal". However, we're hopeful that we'll be able to work with therapists to improve Brady's muscle tone over time. The therapists showed Ali a number of exercises to stretch those areas with Brady.
The people of Gillette Children's Hospital will work with Brady every other week for the next four months and then do another evaluation.
Brady has really turned into a happy baby. He is constantly smiling, laughing, and cooing. Ava and Casey are fantastic helpers and they both love talking to him and getting him to smile.
We had an active Memorial Day weekend bowling, boating and swimming. We hope all of you were able to enjoy the nice weather and extra time with your families.
With love,
Tyler, Ali, Ava, Casey and Brady
The home care nurse visited on Wednesday. She weighed him and Brady gained 14 ounces from last week. We've been adding a little formula to each of Brady's bottles and that has seemed to give him the calories necessary to gain weight. She will be back again on Wednesday.
Brady also has an appointment with his pediatrician on Wednesday. Brady will have his follow up appointment with the NICU on June 29.
The biggest change this week is we finally had our first appointment with Gillette Children's Hospital. Ali went to visit a physical therapist at their Burnsville clinic on Tuesday.
After the evaluation, the biggest concern is Brady's increased tone through the lower extremities including adductors (hips), hip extensors (ability to pull knee down and backward), knee extensors and plantarflexors (ankles). There was also increased tone with elbow extension, wrist extension and finger extension. They also said Brady has a slight left head tilt and doesn't move his head equally both ways (neck muscle tone issues).
Muscle tone is defined by muscle resistance when it is being stretched. Muscle tone can be estimated using a 5 point Ashworth scale. They are: 1) no increase in muscle tone; 2) slight increase giving a catch when part is moved in flexion or extension; 3) more marked increase in tone but only after part is easily flexed; 4) considerable increase in tone; and 5) passive movement is difficult and affected part is rigid in flexion or extension.
Brady's scores on an Ashworth scale were between a 2-3 for all of those areas (1 is normal). The therapist also said that those scores weren't consistent. Sometimes he scores better when you try to move his arms and legs. Obviously, you never want to hear that your baby isn't "normal". However, we're hopeful that we'll be able to work with therapists to improve Brady's muscle tone over time. The therapists showed Ali a number of exercises to stretch those areas with Brady.
The people of Gillette Children's Hospital will work with Brady every other week for the next four months and then do another evaluation.
Brady has really turned into a happy baby. He is constantly smiling, laughing, and cooing. Ava and Casey are fantastic helpers and they both love talking to him and getting him to smile.
We had an active Memorial Day weekend bowling, boating and swimming. We hope all of you were able to enjoy the nice weather and extra time with your families.
With love,
Tyler, Ali, Ava, Casey and Brady
Sunday, May 20, 2012
Rolling Over and Adding Formula
Brady went to see a pediatrician on Monday because we had some concerns about the area around his feeding tube. The area looked red and swollen and there was some fluid coming out around the tube. The doctor said it wasn't infected but gave us some topical antibiotics to help prevent any future infections.
The school district OT came on Tuesday. She spent an hour and a half with Ali and Brady going over paperwork and discussing his progress. The OT said Brady's muscle tone looked normal for a child his age.
The home care nurse came on Wednesday. She was also concerned about the area around his feeding tube. She was also concerned that Brady hasn't gained as much weight as he should.
We contacted our pediatrician to talk about Brady's weight. The doctor had recommended Brady getting 900 ml each day. We consistently have been feeding him between 800 and 850 ml. Instead of giving him a bolus feed through his tube during the day, the doctor recommended adding a teaspoon of formula to each of Brady's bottles. They believe this will give him enough calories to gain weight. We've done that for the past few days, and Brady drinks the bottles of breast milk with formula very well.
I placed Brady on his tummy twice on Sunday and left the room briefly while chasing the other kids around the house. When I came back into the room, Brady was laying on his back and smiling. Hopefully it's a good sign of things to come for Brady to have that strength and body control at 12 weeks. He continues to smile and coo more and more. Ava and Casey really love interacting with him.
Brady will have his initial appointment with Gillette Children's Hospital (in Burnsville) on Tuesday. We've heard nothing but great things about their program, and we're anxious to hear their thoughts about Brady's progress and future treatment. The school district OT will also visit our house to work with Brady on Tuesday. The home care nurse is coming to our house on Wednesday.
We want to thank you again for all of the words of encouragement and prayers. We're hoping all of you have a blessed week.
With love,
Tyler, Ali, Ava, Casey and Brady
The school district OT came on Tuesday. She spent an hour and a half with Ali and Brady going over paperwork and discussing his progress. The OT said Brady's muscle tone looked normal for a child his age.
The home care nurse came on Wednesday. She was also concerned about the area around his feeding tube. She was also concerned that Brady hasn't gained as much weight as he should.
We contacted our pediatrician to talk about Brady's weight. The doctor had recommended Brady getting 900 ml each day. We consistently have been feeding him between 800 and 850 ml. Instead of giving him a bolus feed through his tube during the day, the doctor recommended adding a teaspoon of formula to each of Brady's bottles. They believe this will give him enough calories to gain weight. We've done that for the past few days, and Brady drinks the bottles of breast milk with formula very well.
I placed Brady on his tummy twice on Sunday and left the room briefly while chasing the other kids around the house. When I came back into the room, Brady was laying on his back and smiling. Hopefully it's a good sign of things to come for Brady to have that strength and body control at 12 weeks. He continues to smile and coo more and more. Ava and Casey really love interacting with him.
Brady will have his initial appointment with Gillette Children's Hospital (in Burnsville) on Tuesday. We've heard nothing but great things about their program, and we're anxious to hear their thoughts about Brady's progress and future treatment. The school district OT will also visit our house to work with Brady on Tuesday. The home care nurse is coming to our house on Wednesday.
We want to thank you again for all of the words of encouragement and prayers. We're hoping all of you have a blessed week.
With love,
Tyler, Ali, Ava, Casey and Brady
Sunday, May 13, 2012
Happy Mother's Day
Brady had an appointment with his pediatrician on Wednesday.
Dr. Tim gave him his two month vaccinations (one oral and four shots in the leg). They wanted Brady to take Tylenol to help prevent any seizures. Ali said Brady barely cried (maybe he has a high pain tolerance from everything he has endured over the past 10 weeks).
Brady now weighs 13 pounds, 6 ounces and is 24 inches long. Dr. Tim increased his daily feeding amount to 900 ml. Ali and I will need to work hard to get him that amount every day. Brady usually takes between 800-850 ml, so we might need to start giving him a bolus feed with his tube during the day. Brady's new feeding tube seems to be working well.
Dr. Tim was very pleased that Brady was showing signs of a normal two-month-old. Brady's neck is strong. He is following movement with his eyes. He is smiling and cooing. He really enjoys being held and is becoming more aware of his surroundings. Here's a quick video of Brady smiling and cooing: http://youtu.be/4eHEIFa5KCQ
Dr. Tim said we might start on solid foods a little earlier than most babies, because it's thicker than milk and easier for Brady to eat.
The one concern Dr. Tim had was the muscle tone in Brady's legs. Brady was a little stiff during his evaluation. Dr. Tim is hopeful that Brady's upcoming therapy will be preventative for any physical limitations.
Dr. Tim is setting up another swallow study at the U of M and a visit with a neurologist there as well. We will have another appointment with Dr. Tim in one month.
On Tuesday, the school district's occupational therapist will come to work with Brady. On Wednesday, the home care nurse will be coming to evaluate Brady. One week from Tuesday we will start with Gillette Children's Hospital therapy as well.
We had a fun and busy weekend as a family. We had a track meet and birthday party on Saturday. We spent time at both grandparents' houses on Sunday.
Today was a special day to say thank you to my wife, mother, and mother-in-law for all of the sacrifices they have made over the past ten weeks. We hope all of you had a wonderful Mother's Day as well.
With love,
Tyler, Ali, Ava, Casey and Brady
Dr. Tim gave him his two month vaccinations (one oral and four shots in the leg). They wanted Brady to take Tylenol to help prevent any seizures. Ali said Brady barely cried (maybe he has a high pain tolerance from everything he has endured over the past 10 weeks).
Brady now weighs 13 pounds, 6 ounces and is 24 inches long. Dr. Tim increased his daily feeding amount to 900 ml. Ali and I will need to work hard to get him that amount every day. Brady usually takes between 800-850 ml, so we might need to start giving him a bolus feed with his tube during the day. Brady's new feeding tube seems to be working well.
Dr. Tim was very pleased that Brady was showing signs of a normal two-month-old. Brady's neck is strong. He is following movement with his eyes. He is smiling and cooing. He really enjoys being held and is becoming more aware of his surroundings. Here's a quick video of Brady smiling and cooing: http://youtu.be/4eHEIFa5KCQ
Dr. Tim said we might start on solid foods a little earlier than most babies, because it's thicker than milk and easier for Brady to eat.
The one concern Dr. Tim had was the muscle tone in Brady's legs. Brady was a little stiff during his evaluation. Dr. Tim is hopeful that Brady's upcoming therapy will be preventative for any physical limitations.
Dr. Tim is setting up another swallow study at the U of M and a visit with a neurologist there as well. We will have another appointment with Dr. Tim in one month.
On Tuesday, the school district's occupational therapist will come to work with Brady. On Wednesday, the home care nurse will be coming to evaluate Brady. One week from Tuesday we will start with Gillette Children's Hospital therapy as well.
We had a fun and busy weekend as a family. We had a track meet and birthday party on Saturday. We spent time at both grandparents' houses on Sunday.
Today was a special day to say thank you to my wife, mother, and mother-in-law for all of the sacrifices they have made over the past ten weeks. We hope all of you had a wonderful Mother's Day as well.
With love,
Tyler, Ali, Ava, Casey and Brady
Sunday, May 6, 2012
Smiling and Laughing
It was another great week for Brady and our family. Brady's new tube seems to be working very well. He has settled back into his normal routines and is a very happy baby.
On Tuesday the school district sent an Early Childhood Special Education director and an occupational therapist to our house. Ali answered their questions about Brady (his new tube, how his past week went, his behaviors, etc.). They are working on a care plan for Brady. The occupational therapist will come back in two weeks to start working with Brady.
On Wednesday a home care nurse from Children's Hospital came to our house. She took Brady's vitals and answered any questions that Ali had. She will also be back in two weeks to evaluate Brady.
Brady is now awake for long stretches during the day and continues to sleep through the night. He really enjoys talking to us. He is constantly smiling and now is starting to laugh a little. He also is getting very strong with holding up his head and body.
We've also noticed that his reflux has really improved. He hasn't had any major spit ups for several days and doesn't seem to arch in pain as much when he eats. He is now eating between 800 and 850 ml per day. He takes about half of that by bottle during the day and then we feed him the remainder at night.
Ali continues to do an amazing job of taking care of Brady and the rest of our family. Brady will have another checkup with his pediatrician on Wednesday and we'll learn more about his progress then.
With love,
Tyler, Ali, Ava, Casey and Brady
On Tuesday the school district sent an Early Childhood Special Education director and an occupational therapist to our house. Ali answered their questions about Brady (his new tube, how his past week went, his behaviors, etc.). They are working on a care plan for Brady. The occupational therapist will come back in two weeks to start working with Brady.
On Wednesday a home care nurse from Children's Hospital came to our house. She took Brady's vitals and answered any questions that Ali had. She will also be back in two weeks to evaluate Brady.
Brady is now awake for long stretches during the day and continues to sleep through the night. He really enjoys talking to us. He is constantly smiling and now is starting to laugh a little. He also is getting very strong with holding up his head and body.
We've also noticed that his reflux has really improved. He hasn't had any major spit ups for several days and doesn't seem to arch in pain as much when he eats. He is now eating between 800 and 850 ml per day. He takes about half of that by bottle during the day and then we feed him the remainder at night.
Ali continues to do an amazing job of taking care of Brady and the rest of our family. Brady will have another checkup with his pediatrician on Wednesday and we'll learn more about his progress then.
With love,
Tyler, Ali, Ava, Casey and Brady
Sunday, April 29, 2012
Replacement Tube
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
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 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
Saturday, March 31, 2012
Status Quo
Written Mar 31, 2012 9:48pm
After yesterday's progress, we were hoping to arrive at the hospital today with news that Brady was taking the full amounts by bottle. He wasn't. Today was very much like yesterday. He had some normal feedings during the evening and slept quite a bit at night. He took 60 ml, 70 ml and 70 ml today when we were there.
They are all good amounts, and he actually took over 50% of his feedings by bottle over the past 12 hours. He didn't appear to be straining as much when he was eating today. We hope that the reflux medicine is making it easier and more comfortable for him to eat.
At the same time, it doesn't appear like he's going to make that next leap this weekend. We think they have us on the schedule for surgery on Monday morning. We will need to confirm everything and give permission either tomorrow or Monday morning.
We do appreciate hearing from family and friends with experience using G-tubes. There always is a little bit of fear with the unknown. We obviously would prefer for Brady not to need surgery. At the same time, we know that this procedure is the best step for Brady's recovery.
The nurses there call the G-tube (or G-J tube) the gateway to home. We've learned that it's a very common procedure at the NICU. While parents are often reluctant at first, we've also learned that parents really grow to appreciate the device.
Thanks again for your messages and prayers as we move to this next phase in Brady's recovery.
With love,
Tyler, Ali, Ava, Casey and Brady
They are all good amounts, and he actually took over 50% of his feedings by bottle over the past 12 hours. He didn't appear to be straining as much when he was eating today. We hope that the reflux medicine is making it easier and more comfortable for him to eat.
At the same time, it doesn't appear like he's going to make that next leap this weekend. We think they have us on the schedule for surgery on Monday morning. We will need to confirm everything and give permission either tomorrow or Monday morning.
We do appreciate hearing from family and friends with experience using G-tubes. There always is a little bit of fear with the unknown. We obviously would prefer for Brady not to need surgery. At the same time, we know that this procedure is the best step for Brady's recovery.
The nurses there call the G-tube (or G-J tube) the gateway to home. We've learned that it's a very common procedure at the NICU. While parents are often reluctant at first, we've also learned that parents really grow to appreciate the device.
Thanks again for your messages and prayers as we move to this next phase in Brady's recovery.
With love,
Tyler, Ali, Ava, Casey and Brady
Friday, March 30, 2012
One Month
It's hard to believe that it's been a month since Brady's birth. We're so proud of the progress he's made and so thankful to the doctors and nurses who continue to care for him.
We think the superhero costume Brady wore yesterday might have rubbed off on him.
When Ali and I arrived at the hospital today, the OT met us in the hall. She said Brady had his best day of therapy with her today. The neurologist was also checking on Brady at the time, and they both were impressed with Brady's progress through all of the exercises. The OT also said that Brady had his best feeding with her at 10 a.m. Brady took 78 ml, and she believed he would've taken the entire 110 ml if it wasn't for his reflux problems.
In fact, Brady had his best day ever eating. He took 42 ml at 9:30 p.m., 15 ml at 1:00 a.m., 20 ml at 4:00 a.m., slept through his 7:00 feeding, took 78 ml at 10:00 a.m. (with OT), took 48 ml at 1:00 p.m. (with Ali), and took 60 ml at 4:00 p.m. (with Ali and me tag teaming him).
The OT believes he might now be strong enough to complete entire feedings, and that sentiment was echoed by our nurses and the neonatologist. They moved Brady to a different reflux medicine today called Protonix. We'll know in the next 24 hours if the new medicine will allow him to complete a full feeding.
If he doesn't make those final strides this weekend, we'll probably make our final G-J tube decision by Monday.
It's a big weekend for Brady. We know that Brady continues to be healed through your words of encouragement and prayers. Please say an extra prayer or two over the next couple of days.
With love,
Tyler, Ali, Ava, Casey and Brady
Thursday, March 29, 2012
Superhero Day
Brady's feedings were very similar today. He took 12 ml by bottle at 10 p.m. last night and 15 ml at 1 a.m. He slept completely through his 4 a.m. and 7 a.m. feedings. There was a time when Brady was mostly awake during the night, but now it has seemed to switch to the morning. Brady took 64 ml at 10 a.m. and 45 ml at 1 p.m. Ali fed him 70 ml at 4 p.m. His feeding seems to be stagnant at a rate around 40% of his intake by bottle. We'll see if that stays the same through the weekend.
Ali and I have talked a lot about how it feels like we are living a "double life" at the hospital and at home. We have a family of three at the hospital for several hours each day. We get up to the hospital between 10-11 a.m., hold and feed him all day, say a prayer for him, and kiss him goodnight around 5 p.m.
We also have a family of four at home. Ali gets Ava and Casey ready in the morning, drops them off with one set of grandparents, and then we see them again around 6 p.m. We eat a meal together, play with them, read some books, say a prayer, and kiss them goodnight around 8:30 p.m.
I feel bad that I don't think about Ava and Casey as much as I should when I'm with Brady and vice versa. Ali and I keep talking about how weird it is to have a disjointed family like ours. Nothing feels normal.
At the same time, we feel so blessed that our kids are taking everything in stride. Brady keeps fighting and growing. Ava and Casey are enjoying spending more time with their grandparents and cousins. We've created new routines, and our kids seem to be adjusting very well.
Last night we went for a stroll outside with the kids around the block. Ava rode her bike and Casey rode his Hot Wheels. Casey would make Fred Flintstone proud. He doesn't use the pedals at all, he just moves his feet as quickly as he can on the ground below him. It's amazing that he can keep up with Ava on her bike most of the time.
I was walking next to Ava and talking to her about our day (mine at the hospital and hers with grandma). I told her we were proud of how well she was handling being away from her mom and dad so much. She looked at me and said, "That's okay, Dad. I'm just getting some practice for when I go to college and won't be living with you and mom". That's our Ava. She's six going on sixteen.
Today was Superhero Day at Amplatz. They had a number of activities in the lobby for children in the hospital and their families. Patients and hospital staff members were dressed up as Spiderman, Superman and Wonder Woman. Kids were able to make their own masks and capes. Chad Greenway from the Vikings and several Gopher football players were there to sign autographs and play with the kids. Later in the day they had a meal from Chili's Restaurant and cookie decorating. It was amazing to see so many critically ill children with smiles on their faces.
Ava and Casey were at Grandma Rita's house and Brady is unable to leave him room, so Ali and I spent some time getting superhero goodies for our three kids. Brady didn't seem very excited to get his new gear...he just kept sleeping. We put a Spiderman tattoo on his arm, a cape on his back, a mask on his face, and a balloon and certificate in his crib.
I heard about the event a couple of days ago on the radio. They were talking about how these kids in the hospital are able to dress up as their favorite superhero. Many choose the traditional characters, but some patients want to dress up as their biggest hero, their mom or dad. I know if Ali or I had the chance to dress up as our superhero, we'd throw a tube in our nose (fake, of course) and wear a onesie for adults. We'd become our superhero, Brady.
Good night, SuperBrady. We hope you'll use your new cape to fly home soon.
With love,
Tyler, Ali, Ava, Casey and Brady
Ali and I have talked a lot about how it feels like we are living a "double life" at the hospital and at home. We have a family of three at the hospital for several hours each day. We get up to the hospital between 10-11 a.m., hold and feed him all day, say a prayer for him, and kiss him goodnight around 5 p.m.
We also have a family of four at home. Ali gets Ava and Casey ready in the morning, drops them off with one set of grandparents, and then we see them again around 6 p.m. We eat a meal together, play with them, read some books, say a prayer, and kiss them goodnight around 8:30 p.m.
I feel bad that I don't think about Ava and Casey as much as I should when I'm with Brady and vice versa. Ali and I keep talking about how weird it is to have a disjointed family like ours. Nothing feels normal.
At the same time, we feel so blessed that our kids are taking everything in stride. Brady keeps fighting and growing. Ava and Casey are enjoying spending more time with their grandparents and cousins. We've created new routines, and our kids seem to be adjusting very well.
Last night we went for a stroll outside with the kids around the block. Ava rode her bike and Casey rode his Hot Wheels. Casey would make Fred Flintstone proud. He doesn't use the pedals at all, he just moves his feet as quickly as he can on the ground below him. It's amazing that he can keep up with Ava on her bike most of the time.
I was walking next to Ava and talking to her about our day (mine at the hospital and hers with grandma). I told her we were proud of how well she was handling being away from her mom and dad so much. She looked at me and said, "That's okay, Dad. I'm just getting some practice for when I go to college and won't be living with you and mom". That's our Ava. She's six going on sixteen.
Today was Superhero Day at Amplatz. They had a number of activities in the lobby for children in the hospital and their families. Patients and hospital staff members were dressed up as Spiderman, Superman and Wonder Woman. Kids were able to make their own masks and capes. Chad Greenway from the Vikings and several Gopher football players were there to sign autographs and play with the kids. Later in the day they had a meal from Chili's Restaurant and cookie decorating. It was amazing to see so many critically ill children with smiles on their faces.
Ava and Casey were at Grandma Rita's house and Brady is unable to leave him room, so Ali and I spent some time getting superhero goodies for our three kids. Brady didn't seem very excited to get his new gear...he just kept sleeping. We put a Spiderman tattoo on his arm, a cape on his back, a mask on his face, and a balloon and certificate in his crib.
I heard about the event a couple of days ago on the radio. They were talking about how these kids in the hospital are able to dress up as their favorite superhero. Many choose the traditional characters, but some patients want to dress up as their biggest hero, their mom or dad. I know if Ali or I had the chance to dress up as our superhero, we'd throw a tube in our nose (fake, of course) and wear a onesie for adults. We'd become our superhero, Brady.
Good night, SuperBrady. We hope you'll use your new cape to fly home soon.
With love,
Tyler, Ali, Ava, Casey and Brady
Wednesday, March 28, 2012
Care Conference
Brady's feeding really hasn't improved over the past few days. He continues to eat about 40 percent of his required volume through a bottle. He has large feedings and then seems to sleep through next one. It's hard to tell if his feeding issues are due to brain injury, throat trauma, or lack of physical strength. His aspiration and reflux problems make it even more difficult to determine a cause or a solution for his feeding issues.
They had initially set this Sunday as the point to reevaluate his progress with eating. If he isn't showing improvement by then, there's a good chance that he has reached a plateau and could stay at that level for several more weeks.
Our nurses had mentioned having a meeting with the neonatologist, OT, pediatric surgeon, and nurses about the next steps with Brady's treatment later this week. Instead of scheduling that meeting, they all stopped by Brady's bedside throughout the day today.
We actually had three surgeons who visited us at different points. The first was a resident student, then the actual surgeon who would complete the procedure and then another resident. Since the U of M is a teaching clinic, we've met residents almost every day at the hospital.
The doctors all explained that there are three treatments for babies like Brady. The first is called Nissen fundoplication. It involves wrapping the upper portion of the stomach around the lower portion of the esophagus to cure the reflux issue. We've learned this is usually a last resort surgery, and they would prefer not to do this with Brady right now.
The second option is the G-tube which we explained a few days ago. They would insert a button valve outside his stomach that would allow us to feed him directly into his stomach instead of through the tube in his nose.
The third option is a gastrostomy-jejunostomy (G-J) tube. This is very similar to the G-tube except there is a second internal tube that goes into the small intestine. The button on the exterior of the stomach would allow us to feed him directly into the stomach (large amounts) or into the small intestine (smaller amounts) in any combinations. The advantage of the G-J tube is that feeding directly into the small intestine eliminates the reflux issues that occur in the stomach.
The doctors all told us that the G-J tube is the best option for Brady. Our nurse brought us to look at another baby in the NICU who currently has a G-J tube. She explained how it works, and it was nice to see exactly what it would look like.
We also met with the neonatologist today. He said that it's difficult to predict how long it will take Brady to eat on his own. If he has reached a plateau, it could be weeks or months.
His recommendation was the G-J tube if Brady isn't showing more progress by Sunday. Our OT and nurse today also said the G-J tube makes the most sense.
We scheduled the G-J tube surgery for early next week. We'll wait to see Brady's progress through Sunday before we confirm the surgery.
The biggest advantage of a G-J tube is that we would be able to bring Brady home. The neonatologist told us that babies will recover more quickly at home. Babies can't go home with the feeding tube in their nose because they are too difficult to manage. The G-J tube would allow us to feed Brady by bottle and then supplement the rest of the feedings through the tube. We could send large amounts into his stomach or trickle smaller amounts overnight into his small intestine. It also would allow us to feed him any medication directly into his stomach (Brady will be on a seizure medication when he comes home).
We have some concerns about bringing Brady home with this tube in his stomach and doing everything on our own. Brady will stay in the hospital for about a week after the G-J tube surgery. Ali and I will be able to work with nurses and learn how to use the tube and care for Brady during that time. We also might stay overnight at the hospital before bringing him home to make sure we feel comfortable with everything.
We continue to trust the doctors and nurses and the suggestions they make for Brady's care. Please continue to keep Brady in your thoughts and prayers as we move through this final hurdle to bring Brady home.
With love,
Tyler, Ali, Ava, Casey and Brady
They had initially set this Sunday as the point to reevaluate his progress with eating. If he isn't showing improvement by then, there's a good chance that he has reached a plateau and could stay at that level for several more weeks.
Our nurses had mentioned having a meeting with the neonatologist, OT, pediatric surgeon, and nurses about the next steps with Brady's treatment later this week. Instead of scheduling that meeting, they all stopped by Brady's bedside throughout the day today.
We actually had three surgeons who visited us at different points. The first was a resident student, then the actual surgeon who would complete the procedure and then another resident. Since the U of M is a teaching clinic, we've met residents almost every day at the hospital.
The doctors all explained that there are three treatments for babies like Brady. The first is called Nissen fundoplication. It involves wrapping the upper portion of the stomach around the lower portion of the esophagus to cure the reflux issue. We've learned this is usually a last resort surgery, and they would prefer not to do this with Brady right now.
The second option is the G-tube which we explained a few days ago. They would insert a button valve outside his stomach that would allow us to feed him directly into his stomach instead of through the tube in his nose.
The third option is a gastrostomy-jejunostomy (G-J) tube. This is very similar to the G-tube except there is a second internal tube that goes into the small intestine. The button on the exterior of the stomach would allow us to feed him directly into the stomach (large amounts) or into the small intestine (smaller amounts) in any combinations. The advantage of the G-J tube is that feeding directly into the small intestine eliminates the reflux issues that occur in the stomach.
The doctors all told us that the G-J tube is the best option for Brady. Our nurse brought us to look at another baby in the NICU who currently has a G-J tube. She explained how it works, and it was nice to see exactly what it would look like.
We also met with the neonatologist today. He said that it's difficult to predict how long it will take Brady to eat on his own. If he has reached a plateau, it could be weeks or months.
His recommendation was the G-J tube if Brady isn't showing more progress by Sunday. Our OT and nurse today also said the G-J tube makes the most sense.
We scheduled the G-J tube surgery for early next week. We'll wait to see Brady's progress through Sunday before we confirm the surgery.
The biggest advantage of a G-J tube is that we would be able to bring Brady home. The neonatologist told us that babies will recover more quickly at home. Babies can't go home with the feeding tube in their nose because they are too difficult to manage. The G-J tube would allow us to feed Brady by bottle and then supplement the rest of the feedings through the tube. We could send large amounts into his stomach or trickle smaller amounts overnight into his small intestine. It also would allow us to feed him any medication directly into his stomach (Brady will be on a seizure medication when he comes home).
We have some concerns about bringing Brady home with this tube in his stomach and doing everything on our own. Brady will stay in the hospital for about a week after the G-J tube surgery. Ali and I will be able to work with nurses and learn how to use the tube and care for Brady during that time. We also might stay overnight at the hospital before bringing him home to make sure we feel comfortable with everything.
We continue to trust the doctors and nurses and the suggestions they make for Brady's care. Please continue to keep Brady in your thoughts and prayers as we move through this final hurdle to bring Brady home.
With love,
Tyler, Ali, Ava, Casey and Brady
Tuesday, March 27, 2012
Four Weeks
Ali drove for the first time since having the baby today. She dropped the kids off at her parents' house and met me at Burnsville after my track practice. When I went to get her out of the truck, there was a loud hissing noise coming from her driver's side front wheel. I looked at the tire and found a small hole. The tire was flat in a matter of seconds.
Luckily we had both vehicles there at the time. I drove the car 20 minutes to bring Ali to the hospital...dropped her off at the front door...drove 20 minutes back to the school...changed the tire...and drove the 20 minutes back up to the hospital again.
I held Brady for about 15 minutes and it was already time to bring Ali to her doctor's appointment.
Ali's wound still hasn't completely healed. There is now an area about one inch in length that is still recovering. The doctor did some silver nitrate cauterization on the wound. There was a small section that was healing and she used a Q-tip to open it up a little. Then, she cut that extra skin off. She then used a Q-tip with silver nitrate on the end.
When the silver nitrate comes in contact with fluid (blood), it causes a chemical reaction that burns the tissue to help it heal. Ali said it didn't hurt at the time, but the area was sore as we left the clinic. She'll go back for another incision inspection next Thursday. The race is still on between Brady and Ali to get healed first. :)
Brady had a setback with his feeding overnight. He took 45 ml at 9 p.m. At 12:15 a.m. he had 30 ml and then stopped sucking completely and cried. They gavaged him the rest of the night. They woke him up at 10:00 a.m. and gave him 30 ml. He was very fussy at that time and showed signs of reflux (arched back, making faces, etc.).
Yesterday the OT tried an orthopedic nipple to see if it would help him eat more quickly. The OT today thought the new nipple might be the cause of the extra discomfort. They thought it was allowing the milk to flow too quickly for him to handle. They moved him back to a traditional nipple and it seemed to help a little for his 12:45 feeding.
It's hard to tell if his difficulty with eating is brain related. We've learned that every baby is different and each progresses at a different rate. The process of being intubated slows the eating process down for some babies. Brady has also dealt with aspiration and reflux. Because his milk is more thick (to prevent aspiration), it takes more energy for him to eat. The one thing we don't want to do is create a negative eating experience for Brady. We want him to gain strength, coordination and confidence over time.
We're hoping to have a care conference later this week with the neonatologist, OT, and nurse to talk about Brady's progress and our next steps. If Brady's condition stays the same over the next few days, we might move toward a G-tube.
Once again, we're willing to wait as long as it takes and try whatever techniques they suggest.
Ali and I left the hospital a little earlier than usual today. We had a babysitter watch the kids, and we went out to dinner and a movie. Today is the 11th anniversary of our first date, and we try to celebrate it every year. We feel torn between our life at the hospital and our life at home. It was nice to have a few hours tonight to get away from everything. We also talked about how fortunate we are to be surrounded by such an amazing group of family and friends.
Thanks for your continued messages and prayers for Ali and Brady.
With love,
Tyler, Ali, Ava, Casey and Brady
Luckily we had both vehicles there at the time. I drove the car 20 minutes to bring Ali to the hospital...dropped her off at the front door...drove 20 minutes back to the school...changed the tire...and drove the 20 minutes back up to the hospital again.
I held Brady for about 15 minutes and it was already time to bring Ali to her doctor's appointment.
Ali's wound still hasn't completely healed. There is now an area about one inch in length that is still recovering. The doctor did some silver nitrate cauterization on the wound. There was a small section that was healing and she used a Q-tip to open it up a little. Then, she cut that extra skin off. She then used a Q-tip with silver nitrate on the end.
When the silver nitrate comes in contact with fluid (blood), it causes a chemical reaction that burns the tissue to help it heal. Ali said it didn't hurt at the time, but the area was sore as we left the clinic. She'll go back for another incision inspection next Thursday. The race is still on between Brady and Ali to get healed first. :)
Brady had a setback with his feeding overnight. He took 45 ml at 9 p.m. At 12:15 a.m. he had 30 ml and then stopped sucking completely and cried. They gavaged him the rest of the night. They woke him up at 10:00 a.m. and gave him 30 ml. He was very fussy at that time and showed signs of reflux (arched back, making faces, etc.).
Yesterday the OT tried an orthopedic nipple to see if it would help him eat more quickly. The OT today thought the new nipple might be the cause of the extra discomfort. They thought it was allowing the milk to flow too quickly for him to handle. They moved him back to a traditional nipple and it seemed to help a little for his 12:45 feeding.
It's hard to tell if his difficulty with eating is brain related. We've learned that every baby is different and each progresses at a different rate. The process of being intubated slows the eating process down for some babies. Brady has also dealt with aspiration and reflux. Because his milk is more thick (to prevent aspiration), it takes more energy for him to eat. The one thing we don't want to do is create a negative eating experience for Brady. We want him to gain strength, coordination and confidence over time.
We're hoping to have a care conference later this week with the neonatologist, OT, and nurse to talk about Brady's progress and our next steps. If Brady's condition stays the same over the next few days, we might move toward a G-tube.
Once again, we're willing to wait as long as it takes and try whatever techniques they suggest.
Ali and I left the hospital a little earlier than usual today. We had a babysitter watch the kids, and we went out to dinner and a movie. Today is the 11th anniversary of our first date, and we try to celebrate it every year. We feel torn between our life at the hospital and our life at home. It was nice to have a few hours tonight to get away from everything. We also talked about how fortunate we are to be surrounded by such an amazing group of family and friends.
Thanks for your continued messages and prayers for Ali and Brady.
With love,
Tyler, Ali, Ava, Casey and Brady
Monday, March 26, 2012
Lyrics
Right before Ali and I left this evening, Brady moved to a new room. This is now his third location, and we feel like we're getting to to know every inch of the NICU. We were told that there was another baby who was using a ventilator and needed our place. This once again is good news that Brady continues to improve and now is in a room surrounded by babies who need minimal support.
The bad news is that Ali and I really loved that location. It's one of the only spots in the NICU next to a large bay window. Ali and I were able to hold Brady and watch people walking and driving by the hospital. When you're in the hospital for six hours or more (like Ali has been every day for the past three weeks), it's nice to see that daylight and do some people watching. Brady's new room has windows, but none are located as conveniently as our last location.
Today was much of the same for Brady. Ali and both had the chance to feed him a bottle. Actually, more than half of his feeding was done by bottle over the past 12 hours:
Time Bottle Gavaged
6 p.m. yesterday 40 ml
8 p.m. 65 ml
9 p.m. 37 ml
1 a.m. today 65 ml 60 ml
4 a.m. 100 ml
6 a.m. 48 ml
9 a.m. 70 ml
12 p.m. (Tyler) 40 ml 70 ml
3 p.m. (Ali) 45 ml 55 ml
6 p.m. 57 ml 43 ml
We really have no idea how much he is improving. He is still struggling with some reflux issues when he eats. The nurses keep telling us that he's getting stronger, and they hope he takes the big strides necessary to get him home soon.
The OT came again today and Brady continues to show improvement with all of his body movements. All signs are telling us that once he's able to eat on his own, we'll be ready to leave the hospital.
There are six babies in our room and it is pretty tight quarters with all of the equipment and bodies around. When we arrived this morning, Brady was sleeping on his tummy with his hands tucked under his face. I sat back in the recliner and rested him the same way on my chest.
A few minutes after getting settled, a group of doctors came into our room to do rounds on another baby in our room. When they do rounds on the NICU, the doctors and nurses talk about the baby's progress and any modifications they are going to make to the treatment.
Since they are going over private information about the baby, they ask the other parents in the room to wear headphones. Ali and I put on some headphones, and the nurse asked us what kind of music she should play. We both said we didn't care, and then I told her to play some country music. She played an Internet radio station into our headphones.
I was relaxed back into my chair, my feet were up the in the air, I was looking out the window, and Brady was snuggled up on my chest. It was a completely peaceful moment. This was the song that played: http://www.youtube.com/watch?v=QUuQPSVx684
Tim McGraw - "Comin' Home"
Say goodbye to Old Man Winter
Say hello to sweet springtime
'Cause I'm coming out of hiding
I'm gonna get it right this time
After so long being frozen
It took a while to thaw me out
I spent too long not knowing
What love's supposed to be about
Now I'm finding out
[Chorus:]
It's a lot like coming home
From a long time walking out in the snow
Then I looked at you and knew I never knew nothing
And it broke this heart of stone
It's a lot like coming home
Like a boat out on the harbor
That's been battered by the sea
I've been through some stormy weather
But you shine a light for me
Girl, you set me free
[Chorus]
Coming home
Feels like I'm coming home (repeat)
Oh baby, I'm coming home (repeat)
I'm coming home (repeat)
It's a beautiful song and it's a moment that I'll never forget...holding Brady and hearing those words. Even though it's a love song about a girl, the words really struck a chord with me, especially these lines:
"Say hello to sweet springtime"
"After so long being frozen, it took awhile to thaw me out"
"I've been through some stormy weather, but you shine a light for me"
"Feels like I'm comin' home"
With love,
Tyler, Ali, Ava, Casey and Brady
The bad news is that Ali and I really loved that location. It's one of the only spots in the NICU next to a large bay window. Ali and I were able to hold Brady and watch people walking and driving by the hospital. When you're in the hospital for six hours or more (like Ali has been every day for the past three weeks), it's nice to see that daylight and do some people watching. Brady's new room has windows, but none are located as conveniently as our last location.
Today was much of the same for Brady. Ali and both had the chance to feed him a bottle. Actually, more than half of his feeding was done by bottle over the past 12 hours:
Time Bottle Gavaged
6 p.m. yesterday 40 ml
8 p.m. 65 ml
9 p.m. 37 ml
1 a.m. today 65 ml 60 ml
4 a.m. 100 ml
6 a.m. 48 ml
9 a.m. 70 ml
12 p.m. (Tyler) 40 ml 70 ml
3 p.m. (Ali) 45 ml 55 ml
6 p.m. 57 ml 43 ml
We really have no idea how much he is improving. He is still struggling with some reflux issues when he eats. The nurses keep telling us that he's getting stronger, and they hope he takes the big strides necessary to get him home soon.
The OT came again today and Brady continues to show improvement with all of his body movements. All signs are telling us that once he's able to eat on his own, we'll be ready to leave the hospital.
There are six babies in our room and it is pretty tight quarters with all of the equipment and bodies around. When we arrived this morning, Brady was sleeping on his tummy with his hands tucked under his face. I sat back in the recliner and rested him the same way on my chest.
A few minutes after getting settled, a group of doctors came into our room to do rounds on another baby in our room. When they do rounds on the NICU, the doctors and nurses talk about the baby's progress and any modifications they are going to make to the treatment.
Since they are going over private information about the baby, they ask the other parents in the room to wear headphones. Ali and I put on some headphones, and the nurse asked us what kind of music she should play. We both said we didn't care, and then I told her to play some country music. She played an Internet radio station into our headphones.
I was relaxed back into my chair, my feet were up the in the air, I was looking out the window, and Brady was snuggled up on my chest. It was a completely peaceful moment. This was the song that played: http://www.youtube.com/watch?v=QUuQPSVx684
Tim McGraw - "Comin' Home"
Say goodbye to Old Man Winter
Say hello to sweet springtime
'Cause I'm coming out of hiding
I'm gonna get it right this time
After so long being frozen
It took a while to thaw me out
I spent too long not knowing
What love's supposed to be about
Now I'm finding out
[Chorus:]
It's a lot like coming home
From a long time walking out in the snow
Then I looked at you and knew I never knew nothing
And it broke this heart of stone
It's a lot like coming home
Like a boat out on the harbor
That's been battered by the sea
I've been through some stormy weather
But you shine a light for me
Girl, you set me free
[Chorus]
Coming home
Feels like I'm coming home (repeat)
Oh baby, I'm coming home (repeat)
I'm coming home (repeat)
It's a beautiful song and it's a moment that I'll never forget...holding Brady and hearing those words. Even though it's a love song about a girl, the words really struck a chord with me, especially these lines:
"Say hello to sweet springtime"
"After so long being frozen, it took awhile to thaw me out"
"I've been through some stormy weather, but you shine a light for me"
"Feels like I'm comin' home"
With love,
Tyler, Ali, Ava, Casey and Brady
Sunday, March 25, 2012
Cue Based Feeding
Jerry and Rita picked up Ava and Casey today and brought them to the zoo with their cousins (Elsie, Anika and Cole). Ali and I went up to the hospital to have snuggle time before the OT arrived.
The OT did many of the same exercises as yesterday. Brady had similar results with his muscle tone, reflexes and natural movements. The OT was very pleased with his overall progress.
We learned that Brady had 55 ml with a bottle at 5 p.m. yesterday, 55 ml at 8 p.m., and 40 ml at 1:15 a.m. He slept through the next two feedings and was gavaged.
Our nurse arrived at 7 a.m. and decided to move him to cue based feeding. Instead of feeding Brady every three hours, we are now looking for cues from Brady that he is hungry.
Brady's signs that he is hungry could include: increased alertness, moving his arms and legs, moving his mouth and tongue, making noises, and eye movements. Crying is considered a late stage of hunger, so we can often catch those signs before he cries.
The OT started working with Brady at 11:30. She woke him up with her therapy and noticed most of those signs listed above. I started feeding Brady at noon and he took 25 ml.
Ali and I left for lunch and our nurse noticed more signs from him while we were gone. At 12:50 she fed him 20 ml. At 2:00 she started feeding him again. Ali and I arrived back from lunch and Ali continued feeding him. He ended up taking 15 ml during that feeding time.
We had some good snuggle time with him for the next hour or so. Eventually he woke back up and started crying. I started feeding him at 3:15 and he took 25 ml.
When Brady was on scheduled feedings, he was getting 110 ml every three hours (440 ml every 12 hours). On the cue based program they want him to take 380 ml every 12 hours.
Brady took 85 ml over the four hours we were feeding him. It will be interesting to see how he did after we left. They will gavage anything he doesn't take by bottle over the 12 hour feeding periods.
The best part for us today was disconnecting Brady completely from his heart monitor the entire time we were there. Ali and I were able to walk around the room with Brady. We stood with him by the window and watched the activity outside. They hooked him back up when he was in his crib, but it was nice to have that freedom while we were holding him.
Ali and I also left the hospital for lunch today and drove to Sally's on the U of M campus. We've both grown tired of the cafeteria food at the hospital after eating it for three weeks. :)
We can't wait to get Brady outside to breathe this fresh spring air.
With love,
Tyler, Ali, Ava, Casey and Brady
The OT did many of the same exercises as yesterday. Brady had similar results with his muscle tone, reflexes and natural movements. The OT was very pleased with his overall progress.
We learned that Brady had 55 ml with a bottle at 5 p.m. yesterday, 55 ml at 8 p.m., and 40 ml at 1:15 a.m. He slept through the next two feedings and was gavaged.
Our nurse arrived at 7 a.m. and decided to move him to cue based feeding. Instead of feeding Brady every three hours, we are now looking for cues from Brady that he is hungry.
Brady's signs that he is hungry could include: increased alertness, moving his arms and legs, moving his mouth and tongue, making noises, and eye movements. Crying is considered a late stage of hunger, so we can often catch those signs before he cries.
The OT started working with Brady at 11:30. She woke him up with her therapy and noticed most of those signs listed above. I started feeding Brady at noon and he took 25 ml.
Ali and I left for lunch and our nurse noticed more signs from him while we were gone. At 12:50 she fed him 20 ml. At 2:00 she started feeding him again. Ali and I arrived back from lunch and Ali continued feeding him. He ended up taking 15 ml during that feeding time.
We had some good snuggle time with him for the next hour or so. Eventually he woke back up and started crying. I started feeding him at 3:15 and he took 25 ml.
When Brady was on scheduled feedings, he was getting 110 ml every three hours (440 ml every 12 hours). On the cue based program they want him to take 380 ml every 12 hours.
Brady took 85 ml over the four hours we were feeding him. It will be interesting to see how he did after we left. They will gavage anything he doesn't take by bottle over the 12 hour feeding periods.
The best part for us today was disconnecting Brady completely from his heart monitor the entire time we were there. Ali and I were able to walk around the room with Brady. We stood with him by the window and watched the activity outside. They hooked him back up when he was in his crib, but it was nice to have that freedom while we were holding him.
Ali and I also left the hospital for lunch today and drove to Sally's on the U of M campus. We've both grown tired of the cafeteria food at the hospital after eating it for three weeks. :)
We can't wait to get Brady outside to breathe this fresh spring air.
With love,
Tyler, Ali, Ava, Casey and Brady
Saturday, March 24, 2012
Family Time
Ali and I headed up to the hospital after track practice this morning. We took turns snuggling with Brady before the OT showed up.
At 11:30 Brady went through therapy with Holly. She was very impressed with his muscle tone. His upper body and lower body are improving. He hasn't shown any ankle clonus for several days. Brady once again displayed tremendous strength during tummy time. Holly also did several exercises to wake him up before feeding time.
At noon it was my turn to try to feed Brady with a bottle for the first time. Holly gave me several tips while Brady was feeding. I sat Brady on my left leg and held his head and jaw upright with my left hand. Because of Brady's reflux, it is best to start feeding him from that position. I held the bottle like a pencil in my right hand. I learned to angle the bottle down to put pressure on his tongue. When he stopped eating, I used my fingers to support his chin and pressed in his cheeks to create better suction. I also pulled the bottle out a little to get him to suck it back in and continue eating.
After a while he started pulling away and arching his back. This was a sign that he was getting some reflux. I then tilted his head down to my knee and held him sideways on my left forearm. Since the stomach is shaped like a "C", this prevents the reflux from moving up.
I tried every trick in the book for that next half hour. I would sit him up, tip him down, squeeze the checks, lift the chin, press the tongue, pull the bottle out, burp him, and repeat. I was pretty proud of myself until I found out all of that work had resulted in 28 ml. I had a new appreciation of what Ali has been doing every day and what our nurses are doing every night.
Just to throw a little salt in the wound, Ali fed him 43 ml at 3 p.m. We also learned he had 55 ml at 6 p.m. yesterday, 55 ml at 9 p.m., 50 ml at midnight, 15 ml at 9 a.m. I guess it's back to the drawing board for me. I'm going to do some visualization and some practicing during my free time and I'll be back tomorrow to improve on my total. :)
My mom brought Ava and Casey up to the hospital for about an hour in the afternoon. Ava read Brady a couple of books. She also enjoyed some snuggle time with him. We can't wait for the time when Casey can finally meet his little brother and take our first photo with our family together.
We brought Ava to a sleepover birthday party tonight. Ali, Casey and I went out to eat and saw the movie The Lorax (and Casey ate half a bag of cotton candy). It was great finish to wonderful day with our family. We're hoping that tomorrow is much of the same.
With love,
Tyler, Ali, Ava, Casey and Brady
At 11:30 Brady went through therapy with Holly. She was very impressed with his muscle tone. His upper body and lower body are improving. He hasn't shown any ankle clonus for several days. Brady once again displayed tremendous strength during tummy time. Holly also did several exercises to wake him up before feeding time.
At noon it was my turn to try to feed Brady with a bottle for the first time. Holly gave me several tips while Brady was feeding. I sat Brady on my left leg and held his head and jaw upright with my left hand. Because of Brady's reflux, it is best to start feeding him from that position. I held the bottle like a pencil in my right hand. I learned to angle the bottle down to put pressure on his tongue. When he stopped eating, I used my fingers to support his chin and pressed in his cheeks to create better suction. I also pulled the bottle out a little to get him to suck it back in and continue eating.
After a while he started pulling away and arching his back. This was a sign that he was getting some reflux. I then tilted his head down to my knee and held him sideways on my left forearm. Since the stomach is shaped like a "C", this prevents the reflux from moving up.
I tried every trick in the book for that next half hour. I would sit him up, tip him down, squeeze the checks, lift the chin, press the tongue, pull the bottle out, burp him, and repeat. I was pretty proud of myself until I found out all of that work had resulted in 28 ml. I had a new appreciation of what Ali has been doing every day and what our nurses are doing every night.
Just to throw a little salt in the wound, Ali fed him 43 ml at 3 p.m. We also learned he had 55 ml at 6 p.m. yesterday, 55 ml at 9 p.m., 50 ml at midnight, 15 ml at 9 a.m. I guess it's back to the drawing board for me. I'm going to do some visualization and some practicing during my free time and I'll be back tomorrow to improve on my total. :)
My mom brought Ava and Casey up to the hospital for about an hour in the afternoon. Ava read Brady a couple of books. She also enjoyed some snuggle time with him. We can't wait for the time when Casey can finally meet his little brother and take our first photo with our family together.
We brought Ava to a sleepover birthday party tonight. Ali, Casey and I went out to eat and saw the movie The Lorax (and Casey ate half a bag of cotton candy). It was great finish to wonderful day with our family. We're hoping that tomorrow is much of the same.
With love,
Tyler, Ali, Ava, Casey and Brady
Friday, March 23, 2012
Spring Break
Ava and I are both officially on spring break. As a teacher, I've always looked forward to spring break as a time to "recharge the batteries" for that final stretch of school. I've been fortunate to travel every year during spring break since I was young. Most of the time we've traveled to Florida or some other warm place.
When we found out Ali was pregnant, we knew our annual spring break vacation was in jeopardy. Our initial due date was March 8. We figured it would be hard to travel with a baby only a couple of weeks old. We could've never imagined at the time that we'd reach spring break without the ability to travel outside of a hospital room with our new baby.
Instead of swimming in a pool or walking the beach, we're looking forward to a spring break spent together as a family at the hospital and at home.
We continue to be blessed by the sacrifices our families have made to help us. My mom had her annual trip to Florida booked for this week but canceled it at the last minute when we realized Brady wasn't going to be home. Ali's mom and dad came home early from their Florida vacation once we knew our baby would be born before the due date. Now Ali's sister and brother-in-law have traveled to Vietnam for a week and Jerry and Rita are watching their three kids in addition to helping with ours.
Our parents have taken turns every day watching Ava and Casey so Ali can spend as much time at the hospital with Brady as possible. We're going to continue that juggling act until Brady comes home. We're so thankful for their generosity, and Ava and Casey have really adjusted well to their extra time with the grandparents.
Today was another day of growth for Brady. He gained 80 grams (2.8 ounces) from yesterday. If he keeps growing at this rate, he'll reach the 12 pound barrier soon.
His feedings continue to improve. His bottle feedings were 70 ml at 6 p.m., 50 ml at 9 p.m., 55 ml at 3 a.m., 40 ml at 6 a.m., and 52 ml at 9 a.m. Ali fed him 47 ml at noon and 62 ml at 3 p.m. Once again, this was a new record for Ali and Brady.
Ali said feeding Brady still isn't easy. The OT has been working with Ali and giving her techniques to help Brady. To help prevent reflux, they are having Brady sit up while eating. Ali needs to hold his head and his chin with one hand and the bottle with the other. Sometimes the feeding takes as long as an hour. When Brady's not hungry his tongue goes to roof of mouth. To get his tongue down, Ali strokes under his chin in a circular motion and the tongue eventually goes down.
The nurses today said they are very pleased with his progress. They think his feeding amount will continue to increase over the next few days.
Ali still had a little bit of blood coming from her incision today and still has some pain and discomfort. She has her next doctor's appointment on Tuesday. Please continue to keep Ali and Brady in your thoughts and prayers.
With love,
Tyler, Ali, Ava, Casey and Brady
When we found out Ali was pregnant, we knew our annual spring break vacation was in jeopardy. Our initial due date was March 8. We figured it would be hard to travel with a baby only a couple of weeks old. We could've never imagined at the time that we'd reach spring break without the ability to travel outside of a hospital room with our new baby.
Instead of swimming in a pool or walking the beach, we're looking forward to a spring break spent together as a family at the hospital and at home.
We continue to be blessed by the sacrifices our families have made to help us. My mom had her annual trip to Florida booked for this week but canceled it at the last minute when we realized Brady wasn't going to be home. Ali's mom and dad came home early from their Florida vacation once we knew our baby would be born before the due date. Now Ali's sister and brother-in-law have traveled to Vietnam for a week and Jerry and Rita are watching their three kids in addition to helping with ours.
Our parents have taken turns every day watching Ava and Casey so Ali can spend as much time at the hospital with Brady as possible. We're going to continue that juggling act until Brady comes home. We're so thankful for their generosity, and Ava and Casey have really adjusted well to their extra time with the grandparents.
Today was another day of growth for Brady. He gained 80 grams (2.8 ounces) from yesterday. If he keeps growing at this rate, he'll reach the 12 pound barrier soon.
His feedings continue to improve. His bottle feedings were 70 ml at 6 p.m., 50 ml at 9 p.m., 55 ml at 3 a.m., 40 ml at 6 a.m., and 52 ml at 9 a.m. Ali fed him 47 ml at noon and 62 ml at 3 p.m. Once again, this was a new record for Ali and Brady.
Ali said feeding Brady still isn't easy. The OT has been working with Ali and giving her techniques to help Brady. To help prevent reflux, they are having Brady sit up while eating. Ali needs to hold his head and his chin with one hand and the bottle with the other. Sometimes the feeding takes as long as an hour. When Brady's not hungry his tongue goes to roof of mouth. To get his tongue down, Ali strokes under his chin in a circular motion and the tongue eventually goes down.
The nurses today said they are very pleased with his progress. They think his feeding amount will continue to increase over the next few days.
Ali still had a little bit of blood coming from her incision today and still has some pain and discomfort. She has her next doctor's appointment on Tuesday. Please continue to keep Ali and Brady in your thoughts and prayers.
With love,
Tyler, Ali, Ava, Casey and Brady
Thursday, March 22, 2012
Progress
The NICU is teaching us patience. In our first few days there, we were asking for estimates on when Brady would be home. One doctor responded, "Weeks". That really narrowed it down for us. :) Most of the time they told us that they really didn't know. They explained that every child is different and there are so many steps in the process.
Over time we've begun to understand what they were trying to say. Every day is a miracle for Brady. There is no timetable. We know Brady will come home when he's ready, and we're willing to wait as long as necessary. We've come to celebrate the small improvements and brush off the setbacks.
Today was another day to celebrate for Brady.
Brady took 52 ml at 6 p.m. yesterday, 25 ml at 9 p.m., 25 ml at midnight, 60 ml at 6 a.m., and 40 ml at 9 a.m. today.
Ali fed him 15 ml at noon and 53 ml at 3 p.m. That was his best afternoon feeding ever! Ali said it was the most relaxed he's been while he was eating.
He seems to be adjusting well to the thicker milk. They continue to keep his upper body elevated and use the Danny Sling. They also have started giving him a five day trial of Zantac to see if that helps with the reflux.
The last two days I arrived at the hospital around 4 p.m. and stayed for about an hour. Brady was asleep both of those days the entire time. I just placed him face down on my chest and snuggled with him.
Today when I arrived he was wide awake. It's such a blessing to interact with him. He's tracking well and really enjoys it when we talk to him. I still gave him his tummy time on my chest, but he was constantly lifting his head and squirming. He's turning into a strong little boy.
The nurses said he had gained 40 grams from yesterday (1.4 ounces). Once again, this is a good sign that he is getting more healthy and strong.
When the OT worked with him today, she placed him face down on his forearms and shins. Brady was holding his head up for an extended period of time. She commented that this was normal behavior for a three month old. The OT also mentioned that he was less stiff today and his joints had loosened up nicely. The ankle clonus also didn't show up at all today.
The nurses feel like he's making great strides. We can't wait to see him again tomorrow.
We know that Brady continues to be lifted up by your prayers. Please keep them coming. :)
With love,
Tyler, Ali, Ava, Casey and Brady
Over time we've begun to understand what they were trying to say. Every day is a miracle for Brady. There is no timetable. We know Brady will come home when he's ready, and we're willing to wait as long as necessary. We've come to celebrate the small improvements and brush off the setbacks.
Today was another day to celebrate for Brady.
Brady took 52 ml at 6 p.m. yesterday, 25 ml at 9 p.m., 25 ml at midnight, 60 ml at 6 a.m., and 40 ml at 9 a.m. today.
Ali fed him 15 ml at noon and 53 ml at 3 p.m. That was his best afternoon feeding ever! Ali said it was the most relaxed he's been while he was eating.
He seems to be adjusting well to the thicker milk. They continue to keep his upper body elevated and use the Danny Sling. They also have started giving him a five day trial of Zantac to see if that helps with the reflux.
The last two days I arrived at the hospital around 4 p.m. and stayed for about an hour. Brady was asleep both of those days the entire time. I just placed him face down on my chest and snuggled with him.
Today when I arrived he was wide awake. It's such a blessing to interact with him. He's tracking well and really enjoys it when we talk to him. I still gave him his tummy time on my chest, but he was constantly lifting his head and squirming. He's turning into a strong little boy.
The nurses said he had gained 40 grams from yesterday (1.4 ounces). Once again, this is a good sign that he is getting more healthy and strong.
When the OT worked with him today, she placed him face down on his forearms and shins. Brady was holding his head up for an extended period of time. She commented that this was normal behavior for a three month old. The OT also mentioned that he was less stiff today and his joints had loosened up nicely. The ankle clonus also didn't show up at all today.
The nurses feel like he's making great strides. We can't wait to see him again tomorrow.
We know that Brady continues to be lifted up by your prayers. Please keep them coming. :)
With love,
Tyler, Ali, Ava, Casey and Brady
Wednesday, March 21, 2012
Day 22 of Life
When the doctors make their rounds in the NICU, they start by saying the baby's name and the number of days the baby has been alive. Today is "Day 22 of Life" for Brady Krebs.
Brady is now 11 pounds and 11 ounces and continues to grow. They have increased his feedings to 110 ml every three hours.
We have different nurses almost every day. Since they usually are dealing with preemies, the need to double or triple check the feeding amounts to make sure they're correct. Brady is still considered the bouncer on the NICU. :)
Brady seemed to rebound nicely from yesterday's setbacks. His bottle feedings during the night were back in the 40 ml range. Ali was able to feed him 37 ml at noon, which is the best he has ever done during the day.
The nurses today believe he was just adjusting to the thicker milk yesterday and that's why his feedings were down. They also think he was dealing with some reflux issues. They noticed him pulling away from his feedings and also thought he was having problems getting comfortable and sleeping.
When I arrived today Brady's bed was inclined at about 45 degrees. He also was in a "Danny Sling" including a strap around his abdomen which held his body in place. His body was wedged with rolled up towels on both sides. All of this was done to to hold him in place and help prevent reflux. Brady seemed to be in a pretty deep sleep, so it must've been working. :)
The OT today worked on having Brady sit up, gave him some tummy time to work on neck muscles and did some wrist stretches.
Our nurse tonight last saw Brady over the weekend. She thinks he's doing much better with his eating and body movements. Brady's coordination with his feedings is getting better. The nurses will also continue to work with his upper body and lower body to create the correct muscle tone.
After Brady's birth doctors and nurses were concerned about his blood pressure, kidneys, liver, blood sugars, brain activity, heartbeat, breathing, blood oxygen, and much more. 22 days later we are focusing mostly on eating and body movements. He's come a long way, and he continues to get better. We hope that tomorrow is another day of improvement. Thanks again for all of your support and prayers.
With love,
Tyler, Ali, Ava, Casey and Brady
Brady is now 11 pounds and 11 ounces and continues to grow. They have increased his feedings to 110 ml every three hours.
We have different nurses almost every day. Since they usually are dealing with preemies, the need to double or triple check the feeding amounts to make sure they're correct. Brady is still considered the bouncer on the NICU. :)
Brady seemed to rebound nicely from yesterday's setbacks. His bottle feedings during the night were back in the 40 ml range. Ali was able to feed him 37 ml at noon, which is the best he has ever done during the day.
The nurses today believe he was just adjusting to the thicker milk yesterday and that's why his feedings were down. They also think he was dealing with some reflux issues. They noticed him pulling away from his feedings and also thought he was having problems getting comfortable and sleeping.
When I arrived today Brady's bed was inclined at about 45 degrees. He also was in a "Danny Sling" including a strap around his abdomen which held his body in place. His body was wedged with rolled up towels on both sides. All of this was done to to hold him in place and help prevent reflux. Brady seemed to be in a pretty deep sleep, so it must've been working. :)
The OT today worked on having Brady sit up, gave him some tummy time to work on neck muscles and did some wrist stretches.
Our nurse tonight last saw Brady over the weekend. She thinks he's doing much better with his eating and body movements. Brady's coordination with his feedings is getting better. The nurses will also continue to work with his upper body and lower body to create the correct muscle tone.
After Brady's birth doctors and nurses were concerned about his blood pressure, kidneys, liver, blood sugars, brain activity, heartbeat, breathing, blood oxygen, and much more. 22 days later we are focusing mostly on eating and body movements. He's come a long way, and he continues to get better. We hope that tomorrow is another day of improvement. Thanks again for all of your support and prayers.
With love,
Tyler, Ali, Ava, Casey and Brady
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