Charlie continues to meet his milestones and his evaluations actually put him ahead of the game. His 6 month check-up with the pediatrician was a success. He ranks in the 95th percentile for height and 75th percentile for weight. The occupational therapists from the Help Me Grow-Birth to Three program are actually coming to our home less frequently now because Charlie is doing so well.
At 8 months, he continues to be the happiest little baby I have ever encountered. He is now babbling (saying dadada), crawling, scooting, sitting, standing up with little to no assistance, eating finger foods, and just starting to hit the separation anxiety stage. So far, there are no signs of any type of brain damage, which continues to be quite a relief. It is so fun to watch him grow and continuously learning and doing new things every day.
Sunday, September 11, 2011
Saturday, June 4, 2011
Charlie's Story-The First 4 Months
Bringing Charlie home was a great feeling, but came with a lot of unknowns. Just like any other parent, we learned something new every day. Charlie had his own in-home nurse that visited weekly for the first couple of weeks and discontinued their service on January 24, 2011 because he was doing so well.
Charlie had his one month check-up on February 1 with the pediatrician. He weighed 7 lbs 8 oz, so he gained 11 oz. in 2 weeks. The doc didn't have any concerns and said he is a very healthy little boy.
We had two women (occupational therapists) from Help Me Grow-Birth to Three Early Intervention Program out to our house the same day. This program is a public school special education program designed to serve infants and toddlers who show delays in their development. In Charlie's case, it is more of a preventative procedure. They will track his development until they don't think he needs it any longer.
He is a great sleeper and eater. He has been meeting all of his milestones and is actually ahead of the game. Our occupational therapist continues to be amazed at her bi-weekly visits. He is smiling, cooing, squealing, making great eye contact, rolling over, eating solid foods, has great head control, is grabbing objects at midline and transferring them between his hands, sucking on his toes (flexible fella), laughing, and much more.
On Friday, May 20, Charlie had his 4-month NICU check-up at U of MN Children's Hospital. He was seen by a nurse practitioner, an occupational therapist and a neonatologist. Everything went very well and all of the doctor's were very amazed by his progress and optimistic about his future. They did not see any signs for concern, but reminded us that things could change. He told us that the hospital just received permission 2 months ago to follow and research cooling blanket babies, so Charlie just missed the cut. I will try to keep posting updated information and research as I find it.
I continue to be amazed by Charlie's strength and abilities. I honestly don't think that he would be where he is today if it wasn't for the cooling blanket. Stay tuned for more posts and follow-up as Charlie meets his milestones and continues to progress.
Charlie had his one month check-up on February 1 with the pediatrician. He weighed 7 lbs 8 oz, so he gained 11 oz. in 2 weeks. The doc didn't have any concerns and said he is a very healthy little boy.
We had two women (occupational therapists) from Help Me Grow-Birth to Three Early Intervention Program out to our house the same day. This program is a public school special education program designed to serve infants and toddlers who show delays in their development. In Charlie's case, it is more of a preventative procedure. They will track his development until they don't think he needs it any longer.
He is a great sleeper and eater. He has been meeting all of his milestones and is actually ahead of the game. Our occupational therapist continues to be amazed at her bi-weekly visits. He is smiling, cooing, squealing, making great eye contact, rolling over, eating solid foods, has great head control, is grabbing objects at midline and transferring them between his hands, sucking on his toes (flexible fella), laughing, and much more.
On Friday, May 20, Charlie had his 4-month NICU check-up at U of MN Children's Hospital. He was seen by a nurse practitioner, an occupational therapist and a neonatologist. Everything went very well and all of the doctor's were very amazed by his progress and optimistic about his future. They did not see any signs for concern, but reminded us that things could change. He told us that the hospital just received permission 2 months ago to follow and research cooling blanket babies, so Charlie just missed the cut. I will try to keep posting updated information and research as I find it.
I continue to be amazed by Charlie's strength and abilities. I honestly don't think that he would be where he is today if it wasn't for the cooling blanket. Stay tuned for more posts and follow-up as Charlie meets his milestones and continues to progress.
Sunday, May 22, 2011
Background on Cooling Blankets
Four out of every thousand babies born in the U.S. suffers brain damage. Traditionally, there was nothing doctors could do to prevent the lifetime of disabilities that could follow besides supportive care. But now, they're using a simple blanket to save brains and change lives. The cooling blanket is a new hypothermia treatment that may prevent or minimize the long-term consequences of brain injury due to hypoxic-ischemic encephalopathy (HIE), or loss of oxygen at birth: cerebral palsy, cognitive and visual impairments. Perinatal hypoxic-ischemic brain injury is now understood to occur in two phases. The first occurs during the peripartum period when the fetus's brain is exposed to asphyxiation because of inadequate blood flow supplying oxygen to the brain. The second occurs in the hours after birth and is due to secondary energy failure.
Induced hypothermia (the cooling blanket) aims to minimize the damage or prevent infants from experiencing this second phase of brain injury. It involves placing an infant onto a cooling blanket, which quickly reduces the baby’s core temperature down to 33 degrees centigrade. The normal baby’s core temperature is around 36.5 degrees centigrade. That three degree decrease in temperature actually helps any areas of the brain that are potentially injured. The cooling must be initiated within six hours of birth-preferably as soon as possible. The infant is cooled for 72 hours and then gradually warmed. The babies are monitored with amplitude-integrated electroencephalogram (aEEG), serial neurological examinations, and laboratory and imaging studies before, during and after the procedure. Original research studies on the cooling blanket came out in 2005. There were three large randomized clinical trials that demonstrated that cooling was safe and that it could help babies with brain injury. HIE babies are divided into three categories – mild, moderate, and severe. Cooling primarily helps babies with moderate encephalopathies. Cooling is a state of the art therapy that is confined mostly to academic medical centers currently. It is still very experimental and there has been very little research done.
The cooling blanket is a very simple device. It circulates water, and that water is cooled to a certain temperature. It draws heat away from the baby as this water is circulated and cools their temperature down to 33 degrees. It’s been shown to be a very safe therapy because the temperatures used are in the moderate category of hypothermia, and complications associated with hypothermia aren't present until you are less than 30 degrees centigrade.
I am still trying to find stats on how many hospitals have the cooling blanket and how many babies have been cooled.
Induced hypothermia (the cooling blanket) aims to minimize the damage or prevent infants from experiencing this second phase of brain injury. It involves placing an infant onto a cooling blanket, which quickly reduces the baby’s core temperature down to 33 degrees centigrade. The normal baby’s core temperature is around 36.5 degrees centigrade. That three degree decrease in temperature actually helps any areas of the brain that are potentially injured. The cooling must be initiated within six hours of birth-preferably as soon as possible. The infant is cooled for 72 hours and then gradually warmed. The babies are monitored with amplitude-integrated electroencephalogram (aEEG), serial neurological examinations, and laboratory and imaging studies before, during and after the procedure. Original research studies on the cooling blanket came out in 2005. There were three large randomized clinical trials that demonstrated that cooling was safe and that it could help babies with brain injury. HIE babies are divided into three categories – mild, moderate, and severe. Cooling primarily helps babies with moderate encephalopathies. Cooling is a state of the art therapy that is confined mostly to academic medical centers currently. It is still very experimental and there has been very little research done.
The cooling blanket is a very simple device. It circulates water, and that water is cooled to a certain temperature. It draws heat away from the baby as this water is circulated and cools their temperature down to 33 degrees. It’s been shown to be a very safe therapy because the temperatures used are in the moderate category of hypothermia, and complications associated with hypothermia aren't present until you are less than 30 degrees centigrade.
I am still trying to find stats on how many hospitals have the cooling blanket and how many babies have been cooled.
Charlie's Story-Birth
Charlie is one of 30 babies that was eligible for the cooling blanket at University of Minnesota Amplatz Children's Hospital since they started using the new remedy approximately 3 years ago.
My pregnancy with Charlie was great and without any complications, so I was expecting a pretty smooth/normal birth. My story starts on Christmas Day, 2010. I went to the hospital when my contractions were about 2 minutes apart. They sent me home because I was only dilated to two. I went back to the hospital on Tuesday, December 28 with contractions and amniotic fluid leakage. I was sent home again because I was still dilated to two and the fluid I was leaking tested negative. On Sunday, January 2, 2011 at 11 a.m. I went into the hospital for the third time, after my water broke, with a fever of 104. I started pushing around 9 p.m. until about 12:00 a.m. After a double episiotomy and failed vacuuming times 3, the doctor decided that it was time for an emergency c-section. By this time, I could feel everything including the doctor cutting me open during the c-section, so they had to knock me completely out. Surgery lasted about 4 hours because they cut my bladder. Our amazing little boy, Charlie, was born at 12:32 a.m. on January 3, 2011 weighing 6 lbs 9 oz and 18.5 inches long after being vacuumed for a 4th time during the c-section. He was born at 37 weeks and 5 days with an Apgar score of 0/6/8 at 0, 5 and 10 minutes.
Charlie's heart rate and respiratory effort were absent at the time of birth because he was stuck in the birth canal for an extended amount of time (they are guessing that my pelvis wasn't big enough to birth a child vaginally). They presumed he had sepsis because I had an infection in my placenta, which was caused by my amniotic fluid leaking for a week prior to his birth. They got him breathing by bag valve mask and intubation after 30 seconds of being out of the womb, but he was in distress for a longer period of time inside of the womb which led to the emergency c-section. He was rushed to University of Minnesota Amplatz Children's Hospital where they have a top-of-the-line Neonatal Intensive Care Unit (NICU). He was in danger of brain asphyxia, so we were SOOO lucky that this hospital had 2 cooling machines/blankets available. Charlie was placed on the cooling blanket and put into a medically induced coma for comfort.
My husband came into the room crying after I woke up from surgery and I was super confused. He told me that Charlie may have suffered from brain damage during the birthing process. I will remember that moment for the rest of my life. I was finally able to see Charlie 2 days after he was born. He was very swollen, cold, stiff, and his head felt like a bowl of Jell-O, but still the cutest baby I had ever seen. It broke my heart to see him intubated, cold, and naked with cords and monitors strapped to every inch of his body. He was deemed critically ill for the first week of his life. His neonatology assessment was:
He just kept progressing every single day. The day after he was taken off of the cooling blanket, he pooped for the first time and was finally moving around. He was taken off of his ventilator and breathing room air.
Saturday night was probably the best night of our lives. He pooped, cried, ingested milk through a feeding tube, sucked on a pacifier and opened both of his eyes! His eyes were completely swollen shut until that night.
Monday, a week after his birth, he was able to eat without the feeding tube. We stayed at the NICU in one of the family rooms for 3 nights so I could feed him. The hospital started to feel like a prison, but we needed to get his feeding consistent before they would send us home. Charlie had an ultrasound on Wednesday, January 12 and it came back stable, meaning his fracture was healing and not growing.
On Friday, January 14, Charlie was discharged. The nurses were all shocked that he healed so quickly. They called him the "miracle baby." He brought a couple of them to tears when we left. It was a bittersweet moment. We were happy, but scared to take him home without all of the nurses and monitors that had been watching him so closely for the past two weeks.
There were so many things to be thankful for despite the circumstances.
My pregnancy with Charlie was great and without any complications, so I was expecting a pretty smooth/normal birth. My story starts on Christmas Day, 2010. I went to the hospital when my contractions were about 2 minutes apart. They sent me home because I was only dilated to two. I went back to the hospital on Tuesday, December 28 with contractions and amniotic fluid leakage. I was sent home again because I was still dilated to two and the fluid I was leaking tested negative. On Sunday, January 2, 2011 at 11 a.m. I went into the hospital for the third time, after my water broke, with a fever of 104. I started pushing around 9 p.m. until about 12:00 a.m. After a double episiotomy and failed vacuuming times 3, the doctor decided that it was time for an emergency c-section. By this time, I could feel everything including the doctor cutting me open during the c-section, so they had to knock me completely out. Surgery lasted about 4 hours because they cut my bladder. Our amazing little boy, Charlie, was born at 12:32 a.m. on January 3, 2011 weighing 6 lbs 9 oz and 18.5 inches long after being vacuumed for a 4th time during the c-section. He was born at 37 weeks and 5 days with an Apgar score of 0/6/8 at 0, 5 and 10 minutes.
Charlie's heart rate and respiratory effort were absent at the time of birth because he was stuck in the birth canal for an extended amount of time (they are guessing that my pelvis wasn't big enough to birth a child vaginally). They presumed he had sepsis because I had an infection in my placenta, which was caused by my amniotic fluid leaking for a week prior to his birth. They got him breathing by bag valve mask and intubation after 30 seconds of being out of the womb, but he was in distress for a longer period of time inside of the womb which led to the emergency c-section. He was rushed to University of Minnesota Amplatz Children's Hospital where they have a top-of-the-line Neonatal Intensive Care Unit (NICU). He was in danger of brain asphyxia, so we were SOOO lucky that this hospital had 2 cooling machines/blankets available. Charlie was placed on the cooling blanket and put into a medically induced coma for comfort.
My husband came into the room crying after I woke up from surgery and I was super confused. He told me that Charlie may have suffered from brain damage during the birthing process. I will remember that moment for the rest of my life. I was finally able to see Charlie 2 days after he was born. He was very swollen, cold, stiff, and his head felt like a bowl of Jell-O, but still the cutest baby I had ever seen. It broke my heart to see him intubated, cold, and naked with cords and monitors strapped to every inch of his body. He was deemed critically ill for the first week of his life. His neonatology assessment was:
- Critically ill term male infant
- Significant perinatal depression with Apgars of 0/6/8. Responded well to resuscitation efforts, but at risk for multi-organ dysfunction and HIE.
- Respiratory failure required vent support.
- Hypotension
- Abnormal neuro exam without seizures
- Meets criteria for therapeutic hypothermia
- Presumed sepsis with possible PPROM
- Subgaleal hemorrhage
- Potential coagulopathy
- Potential jaundice
- No signs of hypoxia (lack of oxygen to the brain)-best news EVER
- Small skull fracture with a very large hematoma (above the brain)
- Small hematoma right above his brain, but behind the motor strip in the gray matter of the brain
He just kept progressing every single day. The day after he was taken off of the cooling blanket, he pooped for the first time and was finally moving around. He was taken off of his ventilator and breathing room air.
Saturday night was probably the best night of our lives. He pooped, cried, ingested milk through a feeding tube, sucked on a pacifier and opened both of his eyes! His eyes were completely swollen shut until that night.
Monday, a week after his birth, he was able to eat without the feeding tube. We stayed at the NICU in one of the family rooms for 3 nights so I could feed him. The hospital started to feel like a prison, but we needed to get his feeding consistent before they would send us home. Charlie had an ultrasound on Wednesday, January 12 and it came back stable, meaning his fracture was healing and not growing.
On Friday, January 14, Charlie was discharged. The nurses were all shocked that he healed so quickly. They called him the "miracle baby." He brought a couple of them to tears when we left. It was a bittersweet moment. We were happy, but scared to take him home without all of the nurses and monitors that had been watching him so closely for the past two weeks.
There were so many things to be thankful for despite the circumstances.
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