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.
Sunday, June 24, 2012
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
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